nikki's tmj and other stuff

 
TMJD is something that many people have. It is a disorder of the jaw joint. It lead me to need joint replacements in Jan. of 2006. This page will be dedicated to the process I went through and the healing process of my journey of the jaw joint replacements.  I hope that it will help others to understand the process and help some other to make educated decisions if they need this procedure in the future. I  am breaking my story up into segments to make it easier reading.  One thing I want to do is to make a difference in the way people perceive jaw joint replacements.  I want people to realize that they can be successful, esp when you have good doctors, good joints and do your homework about what you are having for surgery.   I have written my story for everyone to read. 

Love laughter and prayers NIKKI.
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MY joints are the http://www.tmjconcepts.com/
 

 this is what I looked like before my surgery.....

When I was 13-14 I was having lots of pain in my jaws when Eating/chewing Things. It appeared as though I had nothing wrong cosmetically just a Few crooked teeth so it was hard to convince my mother that I needed to Go to an orthodontist for a few miss aligned teeth. Well I finally convinced my mom to bring me to the orthodontist. I happened to get lucky and got a good one. Dr Walker is well know for his diagnostic abilities AND happened to take a strong interest in TMJD issues.

Well at 14 I was already showing signs of significant break down in Both tmj joints. If it was a matter of just straightening my teeth I would not even have needed braces. I had an open bite that was adding stress to the joint. I had both an over-bite And an under-bite if you can believe that one!!!. We did many Orthodontic Appliances (many new ones!!!!!) etc. He was really hoping to be able to move the jaws into place without surgery. (however that looked very unlikely at my point because I was already done most of my growing at that point). At the Age of 16 they did a hand x-ray and found out I was done growing. At that point they scheduled the top jaw surgery first. I had my top jaw Brought back a bit.

I was just 17 at the time. A Jr in High school. That summer I had the lower jaw brought forward and was wired shut for 6 weeks. Sometime after the surgery I awoke and couldn't open my mouth. The Oral Surgeon did an X-ray and I had a misplaced disk. He referred me back to the Orthodontist and we treated it with an appliance. This I know took about a year to treat (one of the reasons I wonder why so many surgeries are done to replace them, Move them when an appliance can let Nature do it).

Well I had several x-rays and studies done and the joint was now not breaking down at the same rate and best of all I was pain Free...........until about 3yrs later while at work I was kicked very hard on the side of my face square in the jaw joint by a client. The kick managed to dislocate the joint slightly and strain all the muscles on both sides. So that is what I believe to be the beginning of the battle I am now engaged in.

I got a new appliance to help ease the strain. After that I went back into braces for a second time. I actually had braces on when I met my husband back in 1990 (I was 20yrs old then). I got my braces off and was dealing with pain issues off and on. Finally after the birth of my first baby in 1992 I started seeing a Chiropractor. He adjusted my jaw and in correlation with my dentist I had a splint made that fit my jaw real well. This worked very well for me up until 1997 when my dog decided it was a nice treat!!!!!!!!!! NOT. ( By the way always keep Mouthpieces away from your dogs the plastic isn't good for them and them eating it isn't good for you). I decided maybe I didn't need a splint so I went for about 6 months . Without one ------ bad move on my part. The pain just got worse and worse until it was 24/7. I was able to get muscle relaxers to help with the jaw spasms and ty3 for the really bad days.

In about 1999 I went to the Oral surgeon my dentist recommended and they did some exams etc. It was determined I had severe degenerative Joint disease in both TMJ joints as well as misplaced disks that had adhered to the top on my jaw (one of the many clicks I had is actually the Condyle sliding in and out of the disk). It was recommended that to alleviate the pressure of the jaw (which has now slid way back further that it was before the 1st surgery due to the DJD) that I have my top jaw moved back again. However when I finally got the insurance coverage to do it and after the braces to get it done my bite was corrected and there was no place to put the top jaw. So we once again embarked upon another set of splints like what was built during the waiting period from the time between 1999 and when got to where we were a head. My jaw decided after that, that it would lock both closed and open and partially open on a fairly regular bases. The pain started to get so unbearable as did the opening of my joints. When you can't get your toothbrush inside your mouth to brush your teeth it’s sad.

I have been through PT 2times and have found it very helpful. I learned how to release trigger points. I have been to the ER 3 times for having my jaw locked shut. (dealt with 2 nice doctors there and one real idiot!!!!!). I have also been to the doctor’s office at least twice.

So this past year of 2005-2006 it all came down to making a very hard decision. That was whether or not to do total joint replacements. My Surgeon that I saw in Boston Dr. Stephens Is one of the best. He recommend that we just do the whole thing because he felt that anything else would just lead us back to this step and he’d rather just do it once and the fewer times that you go into the joint the less likely you are to have nerve damage . So anyhow on Jan 10 2006 I had both my tmj joints replaced with the TMJ-concepts. I also had to have the top jaw moved forward I have had no pain on the left side and the right side has been a lot harder in cooperating with me. However all said and done I would go through the whole thing again. It has been very nice to not have my jaw locked for the past 3 months.

I have also in the past 5yrs been diagnosed with fibromyalgia, reactive hypoglacemia, osteo arthritis in the neck and hip, Myo- fascial pain syndrome, Bi-polar and thyroid disorder.

I have 4children, I have been married since 1992 and have a very supportive husband as he knew I had jaw issues but had no clue where it was going to progress to.

My orthodontist, dentist and I was 14 at that time. I will be 36 this year and am thankful that my team is ultraconservative!

Just a bit about the joint replacements. I have felt that they were a success for me. My opening is greater. I'm not locking anymore. I am not taking narcotics on a regular basis anymore. I have some severe spasming on the right side. My bite was thrown off to the right at one point. I am due too get braces off in May. The stress in my neck and shoulders is less as well.

I was not as prepared as I thought I was even though I ran a support group and knew a whole lot before hand. I wasn't expecting it to be as long of a recovery process as it is turning out to be. I am also experiencing ear problems that I have never ever had before. However. All this given. It is still better than locking and being in pain 24/7.

jan 14-2006

hey ya'll I figured I'd let ya'll know I am home sweet home guess that means we can bring out the clowns now eh? The undid my bandages and even undid the elastics that where holding my jaw together today. I had to see the os today cause my bite was ever so slightly off but that is my bite but not the joints he tipple checked it with x-rays. My Os is amazed at how fast I am healing they have already taken my stitches out and have steri stipped me which makes me feel good because I do tend to get allergic reactions to stitches if left in too long.

They took off my chin bandage and I am only on liquid perc. for pain along with liquid advil. my face looks like a chipmunks and my eyes are so pretty in black and blue ... no need for eye shadow right now......... I can eat anything very soft so I am on the good old mush diet we all love so much so that isn't a biggie and as of right now now without any pt I can ope my mouth the sam As I could pre surgery without any working it so that is good and my pain is less right now.

It was weird cause the one thing I was very unprepared for was being unable to read after but I am glad to say I can again read. my chin is numb....must match my brain and I can move 1 eyebrow but not the other. but all and all things are going very good, I have moved to the heat stage of healing

thanks for all your prayers and caring I sure did feel them. Even if I did have a roommate that was horrible the second night.
 jan 14-2006

hey ya'll I figured I'd let ya'll know I am home sweet home guess that means we can bring out the clowns now eh? The undid my bandages and even undid the elastics that where holding my jaw together today. I had to see the os today cause my bite was ever so slightly off but that is my bite but not the joints he tipple checked it with x-rays. My Os is amazed at how fast I am healing they have already taken my stitches out and have steri stipped me which makes me feel good because I do tend to get allergic reactions to stitches if left in too long.

They took off my chin bandage and I am only on liquid perc. for pain along with liquid advil. my face looks like a chipmunks and my eyes are so pretty in black and blue ... no need for eye shadow right now......... I can eat anything very soft so I am on the good old mush diet we all love so much so that isn't a biggie and as of right now now without any pt I can ope my mouth the sam As I could pre surgery without any working it so that is good and my pain is less right now.

It was weird cause the one thing I was very unprepared for was being unable to read after but I am glad to say I can again read. my chin is numb....must match my brain and I can move 1 eyebrow but not the other. but all and all things are going very good, I have moved to the heat stage of healing

thanks for all your prayers and caring I sure did feel them. Even if I did have a roommate that was horrible the second night.
 jan 14-2006


hey ya'll I figured I'd let ya'll know I am home sweet home guess that means we can bring out the clowns now eh? The undid my bandages and even undid the elastics that where holding my jaw together today. I had to see the os today cause my bite was ever so slightly off but that is my bite but not the joints he tipple checked it with x-rays. My Os is amazed at how fast I am healing they have already taken my stitches out and have steri stipped me which makes me feel good because I do tend to get allergic reactions to stitches if left in too long.

They took off my chin bandage and I am only on liquid perc. for pain along with liquid advil. my face looks like a chipmunks and my eyes are so pretty in black and blue ... no need for eye shadow right now......... I can eat anything very soft so I am on the good old mush diet we all love so much so that isn't a biggie and as of right now now without any pt I can ope my mouth the sam As I could pre surgery without any working it so that is good and my pain is less right now.

It was weird cause the one thing I was very unprepared for was being unable to read after but I am glad to say I can again read. my chin is numb....must match my brain and I can move 1 eyebrow but not the other. but all and all things are going very good, I have moved to the heat stage of healing

thanks for all your prayers and caring I sure did feel them. Even if I did have a roommate that was horrible the second night.

feb-03-2006

hi there,
to those of you that are willing to pray for me I ask that you will. as I hit the end of the 3 week mark and head toward the 4 week mark after my surgery I seem to hitting a low point. I just am so tired of feeling the way I do. Of my face feeling not mine, muscles cramped up, my face feeling numb and hurting at times, not eating real food and getting sporadic headaches.. It in a way I think was made worse by being given the grace of Bein fairly pain free before my surgery as I was not in a tmjd flare up and even my opening was bettor at the time. Whilst I know this was the thing to do it still has me a bit down at the moment. I know It will take time a patience to become myself again and I know those are neither of my strong points.

feb13-2006
i decided to edit my post some with some emails that I had sent out to my friends and family about my surgery. well today finds me with stitches coming outa my mouth left and right. I feel like a rag doll with ripped seams. LOL the worst thing in the inside stitches were itching like the dickens this morning!!!!! ever try scratching inside by your chin. Don’t work well.
He also sewed(that word looks weird) me up on the top jaw differently that I was the last time they did the surgery, so it feels weird. I can't believe is still have the dis solvable stitches after 5week inside my mouth. The ones on the lower jaw are from the chin thingy. and the ones on the top are from moving the top jaw I guess it makes sense that the top ones would be hanging in longer cause they get exposed to a hole lot less. Lets face it especially when you can't chew how much stuff goes way up top?

My jaw is still staying put after having it come out of place last week with my yawning episode. I am no longer in need of anything for pain from that episode other than at night .. although I'm petrified of yawing now. My husband almost laughs at me cause I call them the mean nasty yawns. I tell everyone not to yawn in front of me. don't want another one of them sneaking in on me like that no sir eee bob.

My husband call me the bionic mouth. LOL gotta love the fact I have a good sense of humor eh.

anyhow things are definitely looking better. now to get the muscle spasms back into control again and i'll be a happy camper. thanks for all your prayers. they keep me going. It sure is nice to know that I don't have to go through this alone2-18-2006
well anyhow, it turns out that by being a fast healer it was my trouble as well. It seems that I am not disingergrating  the internal stitches as fast as they should be. What had happened was there were a few that had scar tissue form around them and they were what was floating around. Who would have thought they could hurt that bad!! With the fact i had thrown the bite out last week I was thinking the worst. He did say that if they don't disolve on their own he may have to open me up and take them out. however for now we will wait and see what my body does. So now I'm praying that it will dissolve them.

Also the muscle spasms on the right side are still pretty strong, esp at night. He gave me Valium to tame them because I am waking up with all my teeth hurting from clenching so bad and that can overload the joints which would not be good. Overall though everything is going great. I am very blessed that things are as good as they are. The pain levels are very minimal. he did give me a script to put on the scars to help with the insane itching from the internal stitches.

Also the best news of all I can eat real food again. Of course this will take time as I haven't chewed in 6 weeks and the muscles are still adjusting to their new places but it's nice to be able to eat something other than mush.

thanks for being there and praying for me when I need you. I don't go back to see him for another month unless These stitches don't cooperate and they need to be removed. I'm still spitting out stitches from inside my mouth. guess I'm still coming apart at the  seams
.

 

april 4,2006
hey ya'll.  I just came back from my last oral surgeon visit. this one was a bit reassuring as I have had a huge increase of pain in the right joint.  He felt it as I open and closed it many times. He also checked it from the inside.  He asked me about my opening size and if it was a lot larger and it is. He told me the increase in pain is due to 3 things the changing weather. it has been fluctuating alot here in new england.  Also due to the increased opening. I haven't had this much opening in God knows how long. also due to a change in chewing.  I hadn't though of this.  Before I only chewed on the left side of my mouth because the right hurt so bad.  now I chew on both sides so the muscles are definitely getting quite the work out that they haven't been getting.  He recommended that I go back on the celebrex for a short 10 day span then try going off it for a while then if I need to to go back on it.  This way I'll know when I no longer have the inflammation in the joint from he muscles being worked out. So other than a few noises that my new joints make everything is pretty good and I am getting used to them.  
 
 
also as good news I am getting my braces off on march 25. my orthdontist said my bite has never been better.  I will be getting a night guard as I am still clenching.  My ortho pretty much figured that it would be hard to break this habit as I have been clenching forever it seems.  My  Os said that if after I get the night guard I am still clenching very hard then he will look into botox for the muscles on the right side.  However  I hope that won't be necessary.
 
the majority of the pain in the right side is when I open wide or chew something more chewy on the right side. but over all all is looking good. oh yeah the stitches there are a few of those buggers that are being stubborn but they are still getting smaller so he is not worried enough about them to go in after them yet.  so here's to hoping they continue to dissolve away!!!!!
 
 anyhow I go back in June.

April 10,2006
 Ok I have developed a weird new habit at night and I need some ideas on how to break it. I have been racking my brains on why the heck my jaw hurts like hell on the right side when I wake up and my ear is blazing hot. I have taken to sleeping on that side again. I can't get to the back thing cause when my hips are out the back hurts the hips. well anyhow this weekend I woke up and figured out why after no longer wearing my elastics my jaw feels worse than it did while wearing them!!!
 
Now if you remember I was clenching like heck wearing the elastics so I went to every other night and that was great. well this is what I am doing.
 
I am not grinding yet I am.  I am sliding my jaw back and forth but with my mouth open just slightly.  If it is closed I'm not moving it anyplace my husband says but if it is opened even when I nap back and forth it goes. I have not had any side to side movement in my jaw in years, so I dunno if it is just playing around with this new mobility without me or what.  so how do I keep it form moving around short of putting my elastics back on because my braces come off on the 25th of may and they won't be there anymore.
 
 the joint pain goes way down as the day goes on so I know I am killing it at night. I am getting a night guard after this for clentching but I don't think that will stop the side to side stuff.  Unless he gives me something like one of the ones I wore before that the lower jaw slipped into.  arg.
 NIKKI

As of now, May 19 2006, I have gotten my braces off. This as my orthodontist suspected has helped with my muscle spasming on the right side of my face. The actual joint pain is continually diminishing except when the weather changes. This my orals surgeon told me would follow me forever because the surrounding tissues are also effected by the arthritis.
I now have feeling back in my palate and the feeling is returning in my teeth(they hurt now but I do suspect that it will go away soon). I have some slight nerve damage but I do expect that is due to the fact that I had some from my lower jaw surgery. I have some spots I cant feel and others that go ballistic when you touch them lightly.
My worst thing is my ears. I have had ear infections and many times I feel like I am in a fish bowl. Sounds are either extremely loud and over stimulating or I can't hear them well at all.
I am now able to eat a hamburger with NO PAIN WOOHOO
I am really looking forward to getting my night guard, this will make my life so much better, sense I am a clentcher I do feel this will make the last of my spasms bearable.
well folks this is where I am now at just about 6 mnths after my joints were replaced. I'd still do it again, everyone is amazed at how different I look with my chin
NIKKI

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As of now, May 19 2006, I have gotten my braces off. This as my orthodontist suspected has helped with my muscle spasming on the right side of my face. The actual joint pain is continually diminishing except when the weather changes. This my orals surgeon told me would follow me forever because the surrounding tissues are also effected by the arthritis.

I now have feeling back in my palate and the feeling is returning in my teeth(they hurt now but I do suspect that it will go away soon). I have some slight nerve damage but I do expect that is due to the fact that I had some from my lower jaw surgery. I have some spots I cant feel and others that go ballistic when you touch them lightly.

My worst thing is my ears. I have had ear infections and many times I feel like I am in a fish bowl. Sounds are either extremely loud and over stimulating or I can't hear them well at all.

I am now able to eat a hamburger with NO PAIN WOOHOO. I am really looking forward to getting my night guard. this will make my life so much better. sense I am a clencher I do feel this will make the last of my spasms bearable

Jun30,2006
back from the OS today. he took out the last of my stitches(we hope they were the knots working there way through. He says I'm doing really good. He couldn't answer me as to what the bump is behind my jaw bone. he thinks it is probably a huge muscle mass(great like I need more tied up knots anywhere).He did do an x-ray on my way out so I'm sure if anything were to show up he'd call.

He told me that the remaining muscle spams could take up to another 3months or more to work themselves out. (oh yippie). he feels I'll get most of the feeling back in my face but that it may take quite a bit longer because of the damage from my first set of surgeries(i don't hold such an optimistic viewpoint.

He did give me the Ok to see the chiropractor and even said to let him work on the muscle in my jaw as well to see if that would help them calm down. there was no talk of botox anymore so that is good news. Man this sure is a LONG LONG road to recovery. He was quite pleased that I was able to open up much wider although he still didn't measure it.

I did figure out on my own why my right jaw joint has been hurting so much and I don't think it was the splint anymore I think it is the fact I gained a ton of opening in a short time frame and it correlated with me getting the splint so of course I thought it was the splint. the last time I got more opening the right joint got inflamed as well (duh). Hind site is always 20/20.

I am just hoping he is right and all the stitches are finally out . he did say that everyone reacts differently and I am one of the rare cases where the body spits the internal stitches out instead of dissolving them....ack.. what he took out today was the knots so he thinks they are all done. lets pray they are.

so here's to the next 6mnths of healing and hope it goes by faster and easier than the first 6 mnths. I still tire very easily from the muscle spasms and I forget how much of a weight bearing joint the jaw actually is and how much we use it.(especially those who love to talk.) I tend to trigger some spasms on my own simply by touching my face as it is very wacky with the sense of touch right now.

My lip is moving much better I can do most everything except on some days it is really bad and my husband says you can really see me working it.I have had to learn to use it in a completely new way than before and have some very numb areas around it. doc thinks it may come back fully in 1-2yrs time we'll see.

my eyebrow moves now too. slower than the other one but it moves and I smile.

Jul4,2006

 was just thinking about some of the ways that my life has changed sense my surgery. there are some everyday things that have changed or that I just view very differently. I have always been afraid of elbows in large crowds, now they scare me even more. I am very short being only4'11. I am petrified of being hit in the face by an elbow.

I am scared of the airbags in my car. they really worry me. the thought of getting into a fender bender and it going off unnecessarily just tweeks my brain. However that being said I know I can't live my life on the what ifs. I have always had a habit of my head gettin hit.

this has given back to me some of my life that was taken away from me. foods I wasn't able to eat. being able to enjoy things with my kids that I wasn't before. I know that there will be things with my surgery that will follow me forever from this but I do think all in all this is going to be a good choice that I made.
Thu Jul 06, 2006
 today had to be the best day of my life hands down. I actually ate carrots again. for years at least the past 4 years I have dreamed of raw carrots. I have snuck 1 or two here or there but paid an immense price for eating them. I ate a whole handful of the smallest baby carrots. I am normally an ice cream lover but nothing compares to the joy I felt eating these carrots. it was pure heaven. Even if I pay a small price for it it will not be as bad as it was in previous year where just eating 2 carrots would land me to a liquid diet the next day. I am just 6mnths out of my surgery and I cannot tell you how happy this has made me. I once again feel whole.

I never imagined that something so simple as a raw carrot could do this much to my brain. but growing up I loved raw carrots.

anyhow I just really needed to add this to my story as to me this was the biggest missing piece to the whole thing.

Thu Jul 13, 2006

here I am6mnths out with some remaining issues that are just simply driving me insane. I am a bit tweeked that my surgeon as good as he is doesn't seem to take the time with the small things. When I asked him at my last visit about the bundle of nerves that were bothering me he told me that I'd have to check with my dentist because he knew nothing about it. Well it turns out it is a bit of TN or another neuropathy due to the surgery and I have to get a referral to a neurosurgeon that works with TN. He also thinks that I have some of that going on in my face on the right side. Tomorrow I go to see my primary care to see about a dermatologist about the scares and the stitches that are slowly making their way out. Sense I am a horrible scratcher it drives me crazy because it gets itchy when they come out and I am so afraid that I wil get them infected. not only that but it will make the scars worse.

Also another issue that I had faced with my first set of surgeries   has come back to haunt me. I have at least 1 tooth that is dead. it is my very back tooth on the right side. The screws are right at the very end of the tooth . If I pull the tooth them I would have lost 2 of my back teeth on my right side so that isn't an option so it means a root canal. I may have to root canal another tooth the third one on the right side too so that would mean all my last three teeth would be root canaled due to my surgeries(the other one from the first surgery).

anyhow, i sometimes makes me wonder if all these side effects were worth the price I paid for this. root canal, nerve issues, muscle issues, the stitches issues. I wonder sometimes if I traded one set of bad circumstances for something different. Sometimes though I feel that I am so alone in the things I worry about and that these small issues that would be just a small issue to someone else become a mountain to me.

this is easier to deal with on a daily bases. I can eat more foods. I'm not in constant pain.My jaws don't lock anymore. I look at how far I have come from where I was and I know that I have definitely done the right thing. I just wish that it wasn't such an isolating surgery. Right now with my hair cut short because it was making my face twitch and tweek the area on my left side looks horrible I have for the first time sense my surgery enfdured stares from woman(woman only). Yet I know that this too shall pass. Yes this to shall pass. .............

Posted: Tue Jul 18, 2006 11:35

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I have had a real scare now I spent the night sunday in the Er. This is a LOOOONG wild story.it starts by reading the post entitled nikki's wild and wacky face....anyhow from there my night got weirder. I was talking to cynthia and my face was a twitching a twacking all night. anyhow I went to lie down and my face face feels like moved literally I hear this poppling noise in my face. a huge rush of hot all across my face and it feel wild aas hell. I get up and look int the mirror inside my mouth to see what just happened cause it feel like my mouth just dropped suddenly. (leter this feelin g may make soem sense)

anyhow I had honestly felt like both joints are dislocated. it feels like the are hanging. so we decided to goto the ER in Boston to the hospital I had my surgery at. this may have been a bad decision the wait was 4hours because it was backed up getting Them OUT of the er. we finally get in at 7am when we got in at 2am. I finally see a doctor after 8 am. I get cat scanned. they tell me everything looks like it is fine and that it looks like the normal post operative chances. (ok whatever that is supposed to mean)there joints are in the fossa and there are no abscess. however there are some calcifications around my right mastoid(gee wasn't I warning Judy about this), Ok while I'm On the last stage of this fun stuff I have a seizure.......... thankfully in the hospital. I have had a few before(we think but never had them confirmed because the EEG never showed them) . The oddest thing was no blood work was taken. but I did call pcp and they are going to see me on Friday. So I get to see a neuro(had that appt.) and Ent, my OS and who know what other fun stuff may occur.

Oh yeah what do they think happened well..........that big band of inside surgical scarring that I have been complaining about , they think it suddenly snapped causing widespread changes in my face......now what I don't get or understand is how this could have changed the placement of where the scare incisions line up on my neck....

I am not quite sure how all this leaves me feeling now today a few days later. I'm not panicked anymore and rational. I can't wait to get to the ent, the Os and the neurologist and get things straightened out. I also see My primary care. I don't really feel like permeant damage to my joints have been done thanks to lots of prayer from my home church. what is more concerning to me is the calcifications in the mastoid and how they may affect the joints and what they mean for my overall health. But I just can't tie myself all up in knots worrying about this right now. The right side of my face hurts a lot more now than it has in a long time post op. so does my neck. I am seeing my dentist to morrow to check and make sure one of my teeth is not infected. I guess sometimes when things just seem to begging good and w forget that God has made them that way He has a way of humbling us before him. I have defiantly once again been humbled will never forget that it is but before the grace of God that I walk with These joints.

In the Er while I was waiting I was realizing that even if the worst were to be true and they had become dislodged or worse dislodged with screw loose that I had many things I could be so thankful for. There was this homeless man that had convinced himself he was a patient there. There was a beautiful woman with no hair. I had a home, I had a family that loved me and I had enough health to still have my hair. even if I were to become someplace down the road diagnosed with something that would cause me to loose my hair I had the best friend of all Jesus. to me that meant the world.

My family just came so far into my view that night. that no matter what happened with These joints of mine I would still have them and that was what was important. that no matter what happened to the joints of mine I would still be a beautiful creation in the eyes of God. I started to pray for the other people around me.

while I still don't know what tomorrow will bring with everything I have going on now especially after the seizure and the new stuff going on I know My family will always be there for me and that alone I would walk through fire for.



 Posted: Sun Jul 23, 2006 1:39 am  
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new issues are cropping up making things a bit difficult for me to deal with things. I have settled with the fact that I think things with the joint replacement are OK. I got my transcripts from my surgery and looking them over I know no matter what happens I made the right decision here. I am totally amazed that I wasn't in horrid extricating pain 24/7. My pain before had was intermittent and my reasons for doing my surgery was more so because of the locking and the pain that was associated with that than it was with the daily pain. I

In reading my surgical transcripts I found out that I had next to no condyle left, that I had heptropic done formations up in the angular arches(that means bones forming where it wasn't supposed to be and in the muscle/tendon area). I also still had my disks which I knew that because my previous OS felt they were out of place. These had tears in them on both sides and there was very little of them left.

There also was much less of my condyles left than what was originally thought. when we looked at the mri we thought the condyle loss was about 50 percent. this is where my surgeon will just start to consider doing joint replacements if there are certain things going on such as pain, limited opening and locking. well mine were definitely more than 50 percent gone. Also when he got into the joints he found that I had bilateral nasal obstruction secondary to bilateral turbinatehypertropy(big words for large nasal tissues that get inflamed from allergies).

anyhow this was definitely an interesting read and I have some more words to look up and refer to. I got this for my dentist whom has always taken a personal interest in my case and has found my face fascinating. I also in These records figured out why the y wanted me to see the ENt and it is to rule out mastoiditis. I have a feeling this is going to be quickly ruled out and that the calcifications will be due to the any ear infections from right after surgery.

Anyhow now I am having seizures. I don't think in any way that they are related to my joint replacements we have seen what we thought was seizure like activity in me a few years ago a couple times but nobody could account for it and nothing was seen on an MRI or a eeg so it was account as changing bi-polar meds that were also anti seizure meds. But for a long time I have had a right sided weakness. the one thing that does concern me is if ai am having seizures is the wear it will place on the new joints. But as everything else in my life I can only take things one step at a time. It is a huge frustration to me because right now I am dealing with teeth that need root canals from my surgery. at least 3 of them are in need of them maybe more. My dentist doesn't work on my husbands day off and I won't go anywhere else. I need to correlate days to my kids orthodontists and an appoint met to the Ent and neurologist. The joints ar going to poise an issue with test as I will no longer be able to do MRI's I would assume due to the metal in my head so that will leave cat scans.( I don't think my cat at home will work either). the thought of playing with my meds scares the daylights out of me. I can't wait to be past the 31st and know for certain that all is well with the jaw joints after my ER scare thatw ill take one huge load off my mind. then we deal with what is causing my seizures. Until then I know that God is looking over me and that is all I can ask for. My daily pain levels are coming down but my headaches are ever increasing again. I just don't understand that one.


 

 Posted: Fri Jul 28, 2006 4:10 pm  
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acceptance. this has hit me hard today. i have realized that I have yet to accept these joints as mine. maybe that is one reason that whenever something funky goes on it freaks me out. they have been replacement joints. In my mind they are not my joints. they are pieces of mental that have been put in me to replace the one that god gave me. I know that I have to come to a place of acceptance I need to accept These as mine. my new joints as part of me. Until I can get to this point this is going to cause me to notice every single little bit of difference that is there. Every muscle change, Every twitch, and every thing that doesn't feel quiet right.

As much as I realized that I needed the new joints to make my life better I never really accepted the fact that they would have to become a part of me, that they would have to integrate into the very whole of my body. I realize now that I need to stop fighting them in my mind and just as my orthodontist said and relax and accept them. Maybe that is a big factor I haven't ever fully accepted the fact that I have them and they need to become a part of me.
NIKKI
_________________

_
 Posted: Sat Jul 29, 2006 1:19 am       

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once again today new places on my face/palate I am getting feeling and it is driving me absolutely insane. I can feel These two bumps in the back of my mouth . now the weirdest thing has been that sense my surgery my mouth has felt like it was put back together kinda off like he set me to the left. this I think it due in part because of the fact I had more feeling in the left than the right. well as things equal out I am now finding that I have areas on the left that don't have feeling yet that I never realized before either..... anyhow because I couldn't feel this on the right side it felt like something was misplaced(yes again I can't get it out of my mind that something someplace has been misplaced on me somehow .. I know it isn't I have seen the x-rays the cat scans the orthodontist has told me etc. it is just my brain that needs to realize that my jaw joints have been moved to a new place and that feeling is coming back and we need to adjust to this new feature and phase of life).. I went to the mirror and looked in my mouth and felt in side yeup it was there on the opposite side just as pronounced.....but didn't feel as wild........so I know it is just because of the way my new feeling on that side is. It is amazing how the brain works. I am so excited that I can do all These great things that I have been wanting to do again yet for some reason my brain just can't grasp aold of the concept of all that it entails.

then on the left side I go backwards and loose some feeling and it drives me nuts but I know it must be par for the course like walking. we go forward then we go backward.

Posted: Wed Aug 02, 2006 12:28     

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yesterday I had a hearing test. at my ENT appointment. I found out that my hearing is in the normal range and as I like to tell my kids I am not deaf. although I don’t think I came away from the jaw surgery without some damage to the ear area. on the right ear. the ear drum on this side is slightly misshapen. The odd thing is sense my surgery is that my ears haven't lined up they are offset now and they weren't before. (interestingly the girl in my OS office said many there don't have even ears). anyhow My hearing in the right ear is not quit as good as it is in the left. my ability to hear high pitched sounds is extremely good(this i think is even more so that it was before hand). My ability to hear lower tones though is lessened. this is more pronounced in my right ear. He did put me on allgra along with the nasal spray for 6 weeks to see how thing pan out in case it was allergy related.(we will see 6 weeks from now). I have noticed that sense being on nasonex that my ears don't fill up with water the way theyu used to which is a very good thing.

The muscle spasm continue to shift and change. they are hanging out now un the lower jaw area now. At times it feels like the lower jaw is detattached from me and it is the most bazaar thing in the world. It can feel heavy at times. I am starting to get more used to the idea that the joints are mine. I am trying to environ lock tight. i have an area where i know the scarband is going to snap again soon and I am not looking forward to that. I just hope it isn't quiet as traumatic as the last time. I am now looking into what needs to be done to get my neck and shoulders adjusted to the joints as they are now screaming in pain. one thing we tend to forget is how all the body parts are interconnected. there is alot going on right now with my phych doctors changing and the neurologist and seizures(I've had 4 thus far). so slowly I need to weed through everything to get myself all back to normal or as normal as can be.
NIKKI


 Posted: Thu Aug 10, 2006:      

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ok so now I am at 7mnths post op. why am I not fully healed YET. this is just plain old getting old. I want this done and over with. I don't want to deal with any of the residual crap anymore. I want to trade everything and just be me again. OK now why do I say this because after last's nights reaction to a very loud noise in my ears It really freaked me out.

I knew that this would be a long process but I just wasn't prepared for a year long process to tell the truth. by not I figured that I would be done and I would hopefully only be dealing with a few issues and well that just isn't it.

I'm still dealing with the muscle spasms across the right side of my face they got so bad the traveled down my neck and shoulders and I had to switch muscle relaxants. and my ears oh my ears I just don't know if i will ever be able to adjust to the sensitivities there. I have never had ear problems before .I always had good hearing. but they are so sensitive to high pitched noises now, the right ear hurts when you move it, well when you try to put something like ear plugs in it. and they get plugged.


I know I have come a long long way. I don't need pain meds the way I used to . I can eat way more than I used to. but the other things just wear me down so much sometimes that It can make me feel like I am being a bad parent. when I am always telling my kids to be quiet cause they are hurting my ears................(esp my youngest when he makes certain noises).

oh well this too shall pass. Maybe by the time my birthday come I'll be to the point the majority of the muscle spasms will be gone and I can wean off the muscle relaxants. that will be the happiest day!!!!!!!!! I want to be off them so much


 
Posted: Sun Aug 20, 2006
-
These are some things from my husband;

“In march when my mother had her stroke Nikki's speech was as hard or harder to understand than moms.she did not want to take pain meds,when feeling good wood over do it,then pay for it for days. Got sick of the same foods complain if family ate what she liked,got looks from people like she was a freak, eating somethings wood put her back to mush. Even today her mucles in her face ,and neck are issuies ,she wanted to drive right away but refrained,now with seizures it will be 6 months to a year from last to when she can drive. Now she still looks at the new face and says its weird and not me,it feels strange! it will come in time.Mile stones ,drinking threw a straw ,being able to wistle, move eyebrows,smile.”  Charlie

I guess it is easy to forget how much it does effect out families as well I am grateful he was always there for me. NIKKI
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 29 Aug 2006 02:54 pm
I am realizing just how LONG this all is. I would think that after Smiths that I would have a NORMAL feeling mouth and face, but I don't, to top it off I have now got lines that are running up from my chin to my lip I absolutely Hate it. they are driving me crazy. MY husband says they aren't half as noticeable as I seem to think they are. he kids me and tell me to stop looking in the mirror.(he'll tell me he knows I'm beautiful and to stop admiring myself).
There have been some major break through and set back this past month. I got a huge hit on the head the right chin to be exact and this had my right side of the face swollen for about 3 days and had me backwards on the food I was eating. I was back to the pain meds again. The doctor had switched the muscle relaxants I was on because my shoulders and neck was really spasmed out but the new relaxant doesn't seem to be working on the facial muscles, anyhow even Charlie(my husband has noticed that my face is pulling towards the right a lot again.) this is driving me crazy.
Also this past week a had a huge emotional and mental break through I had for months been feeling guilty over the whole chin issue. As much as I have always wanted the chin because it was the one thing that no matter how thin I was it made me look fat I felt that once I had the surgery when I looked in the mirror I had cast away my looking like my mother. I was totally and completely devastated to the point that I was crying over it. Well this week while looking through old pictures my oldest child told me that he never realized how little chin I actually had. He also told me that I now look MORE like my mother than I ever did. OH my God words that I needed to hear, they were sweet music to my ears. I just cried buckets. It was like a huge burden was lifted of my shoulders. I had been feeling like a traitor to my mom ever sense my surgery, that was not a good feeling.
Also I am still dealing with the seizure issues they are settling down a bit and I have an appointment for the eeg then the follow up to see what is going on I will be happy when all this is going on is gotten to the bottom of. I have scheduled some chiro appointments. I am hoping this will help my overall pain issues. Like the in my neck and shoulders.
NIKKI
love, laughter and prayers,

Posted: 31 Aug 2006 02:39 pm

I think I have hit yet another milestone yay me. I think that finally both eyebrows move together. Not lOO percent sure, it looks like it too me. I have yet to tie down another family member to check it out. they are getting tired of me always asking are they working yet. LOL. I guess it is something that is only terribly important to me. although when my eyebrow didn't work at all my kids said my scary face was scarier, so maybe it was to my benefit for it not to work. Now if the stupid lip would work lOO percent. I am not holding my breath on that one.
I am also noticing that my face is finally starting to settle down somewhat, it is still freaky but not quiet as bad. I am having more good face days than bad face days. I can handle being touched more, there are only certain types of touches that I cannot handle and those I can't handle at all.
NIKKI •

Posted: 06 Sep 2006 09:14 pm
I have been working with myofascail releases. I bought a book on them and have been diligently working on all the head/face/neck ones, there are so many more than the ones that I was given by my pt person when I went to years ago. I am amazed at how well the release work is going. I just started my chiropractic appointments with much welcome relief. I am amazed at how that too effects the jaw. I had my sleep dep EEC today, yucky not much fun.
the stress of life is playing its toll on me though. I am feeling it in my face the tightness and tension. It is making me sick to my stomach. Everything with the kids. I am constantly reminded that my face is my weakness. I hate it. I wish that my face were just a regular part of me one that i didn't even need to think about sometimes, ack
anyhow I discovered today that I can't frown right, well actually i frown all to the right my
whole face(lips) go to the right when I try and frown. It looks funny as all get out. I can't even get charlie to do anything for me now with a frown he just laughs at me. I don't think he is trying to be mean I just look really funny frowning, and it hurts to frown. It must be the one area really effected by my lack of lip movement. I had all but forgotten it except for those dang lines that are showing up from where it doesn't move right, well looks like kentin and I are going to have to have frowning practice now
NIKKI
 Posted: 06 Sep 2006 10:19 pm



well this all got me retoing. I was thinking back to how bad my lip was. if you look at my pout the lip is really pulled to the right. I can remember it being pulled that way all the time. I was talking out of one side, that right lip didn't move at all. I couldn't drink from a straw I couldn't kiss my husband I couldn't feel his kiss. No pucker, man It was a very sorry lip. I worked hard to get that lip to move. I can do just about everything with this lip now and I didn't realize how much it could still effect my facial expressions like a pout. I know when I am tired that the lip pulls horribly still to the right side.
all along the OS assured me I would get the full movement back, all along I have felt that there is a small portion that won't come back. MY relationship with my lip is an odd thing. I am literally very conscious when I make certain faces of where that little devil is going so that it can look as normal as possible. At times I feel like I am obsessed with my lip. sometimes I even wear makeup to accent my eyes to take away attion from that part of my face, I hatemake up.
anyhow that is my relation with the lip.I hate my lip I really do I wish it were normal. I don't know if it will ever be. but at least I don't talk like angelica pickles anymore.


Posted: 07 Sep 2006 12:35 pm
my good face/ bad face, what a concept, this has become a reality, it is how Kentin describes my bad days, on the bad days I have a bad face because the right side hurts. I have come to realize how much I see myself through his eyes in my healing. I call my face the good face the bad face, mommy’s bad lip. He was so upset that others were laughing at my pout cause it was a sad face, he saw it for what it was. Not for what it had been, he wanted to kiss the computer so he could fix mommy,s bad face and make it all better so the mommy in the computer wouldn't have a bad face anymore. I have realized how much not only him but all my kids have been important to me in my healing. Kyle has been there along the way taking my pictures, Tori has been encouraging me, mom you'll get better and kolt well he's just a big teddy bear who will hug you when no one else will. But because everyone was in school my connection with Kentin during the healing time became kinda important. we made faces and he always made me laugh. He doesn't see my face as all that different. Other than mommy has a bad face some day. He did ask if mommy's boo=boo's are healed, we told him yes but you will always have to be careful around mommy's face cause it is a little different. I have good kids, they have pulled together through this whole thing much better than I thought they would. I thought this would be hard on them. I think the worst thing for them was my having milkshakes all the time and them not.
NIKKI •
 
Posted: 11 Sep 2006 10:53 am

ok last night in the wee hours I got to thinking about doctor's and how the right ones can make all the difference in the world. I have been very fortunate in my experience to have found good doctor's (with the exception of a rare ER doctor that was a real jerk but that is another story). If I had different doctor's my story could have been so very different. I think about the fact that I am a bit different in the fact that my show has been pretty much run by my orthodontist. I started seeing him at the time that I was 13 or 14. If he had not the knowledge that he had he could have just pulled teeth and fixed my open bite that was. I don't know where that would have led me but my facial structure just from computer imaging they had then it would not have been pretty.(ack).
an open bite is when your teeth are not aligned either top nor bottom you have both a over bite and an under bite, form what my orthodontist told me it is one of the worst bites to have. I may have been corrected completely with orthodontic too had I been treated younger, but by 13 I was done growing. MY orthodontist treats my kids now and understands my deep seated fear that they will inherit my bite. That is because my bite was inherited. I had this from birth, it was result of injury or anything else it was luck of the draw. MY sister too has an open bite that she now wishes she had corrected at the time. MY orthodontist has been patient, he has seen me through 2 orthogantic surgeries, a kick to the head after that, through several splints through braces to get ready for another top jaw surgery that didn't pan out cause there was no place to put it after the teeth were moved and now the joint replacements. He has been one of the most compassionate people I have ever met in my life. When I have panicked over a simple change in my bite he never flinched.
MY orals surgeons. I have had over the time I have been luck there too. they have been Ultra conservative. In a day in age when replacing the disks was the very in thing to do and my disks misplaced after my orthagnthic surgery instead fo doing surgery of anykind they sent me back to my orthodontist whom has a great knowledge of tmjs and he made me specific splints to allow it to go back on its own years later I read of stories that just make me glad my doctors chose that route. I have had one Os that would see me whenever I locked shut and would joke with me. made me feel relaxed even when I was stuck. The Os I have now that just did my replacements he took the time to explain things to my children when they were their showed them the x-rays and how tings lined up. He always made me feel comfortable when I was in his office and He is very personable.
doctors they make all the difference, a good doctor is worth so much and that i s jsut the doctor with the mouth I have been blessed the past several years with a great pep that has stepped in where needed after this surgery and helped out. Yes I have had some great doctors.
love, laughter and prayers,
NIKKI

Posted: 12 Sep 200604:03 pm

dealing with the bus stop is one daunting thing. I hate it. It is cold windy and it hurts my face. I had to jump through hoops to get it so the bus would stop at my house. Well not stop at my house it does this already but if Kentin is not at the street it won't stop which doesn't allow me the comfort of stying inside on cold windy days, so I had to call the school get permission, all that jazz got it fixed but why do I now feel like a handicapped person? this was supposed to make life easier not more complicated. OK so maybe it isn't the face itself but the lack of being able to drive because if we missed the bus we could just jump in the car and drive to school no sweat. I dunno I am feeling discouraged that my face isn't all healed. MY Os said that I would get everything back but the right side feels like something out of a horror flick sometimes, these lines that go from my chin to my lip are more pronounced, the scarband inside my mouth feels all wound up again, and why to These top teeth still hurt? I have one side normal and one side that doesn't belong to me. who's face is it anyhow? can I just disown the right side? I can't wait until the 6th to find out what the OS says about it all. Maybe it is time for the botox. maybe ti will stop the muscle spasm that have haunted me sense my surgery, it just feels like such a weight is on that side of my face like it feels so much heavier than the other side. I want to be semi normal again.
I am beginning to wonder what is normal anymore.
love, laughter and prayers,
NIKKI


well I have two updates the ear doctor and the LIP. I went to the ear doctor and he retested my hearing. The good news is my hearing WAS NOT effected by surgery woot woot!!! hurray hurray. I was very happy to HEAR that, also the right ear drum is once again moving again, why was it flat? that is still a mystery, it was the middle of grass season so it could have been allergies. It could still have been healing(he said it would take up to a year for some muscles to get back to normal including to ones attached to the ear). I found out some other interesting things, my deviated septum is not a simple deviation but also has a bone spur on it. interesting I have them in other places will question my pep about them, also the mystery nodal is Finally solved it is a tendon that has bunched up due to my myofascial pain syndrome, lucky me. he said not to worry it should unravel at some point but when??? I see him back in about 6 mnths. I really like him he is extremely informative and one of those docs that answers ALL those questions even ones that aren't about you. ya know.
NOW THE BIGGIE THE LIP! GUESS WHAT IT IS FINALLY STARTING TO TRULY WORK AGAIN!! can you believe it. i had given up ALL hope. I thought that part of my lip was done gone lost forever, but I got to looking at my picture with kyle and noticed the bulb of my chin looked well not quite centered, well that got me to thinking that maybe I was focusing myself the wrong way see because my lip pulled to the right I was trying to relax everything to the right of my face and pulling things to the left, well I got to feeling around on my chin(I hate my chin touched don't go there it has always had hot spots sense my bottom jaw surgery) anyhow I found this huge bumpy thing I pulled in to the right and there was this POP. wand walla. I had pain and some feeling and new movement, and now I can feel my lip move.(i have always felt my bottom lip move sense my bottom jaw surgery to until this one).
I tried to pout and well it isn't quiet normal but it doesn't look like I have a huge bulge out of the side of my face. I feel painfully liberated.
I'll be getting pictures up tomorrow . I am so excited, my right side of my chin hurts like a bruise now but maybe this is the start of a happier right side of my face lip
.*
NIKKI • --'
 
sept17,2006


well today my bottom lip on the right side started working. hurray hurah. I was so happy. I realized by looking at a picture that it wasn't from the jaw joint surgery that it was effected but from the chin being moved forward. who would have thought that. I reasched the heck out of the joints but fell short of the genioplasy. duh stupid me. well anyhow late last night after spend too many hours on the puter. I was feeling around on the chin near where the cuts should have been made and I felt this little lump and i started moving it around and well there was this POP. after that I got new movement in the area of my lip after 8and a half months I had given up hope on. I figured this part was gone for good. now it hurts. I can feel it moving and I can pout sorta normal again.I never touch my chin cause it really gives me the willies to touch my chin. even just my cat rubbing up against it causes me severe pain. his wiskers are really long. MIlky way though he is my sweetie is always rubbing against my face. The one thing I never thought was to rub my lip the opposite way of how it was miss behaving. it just seemed that I should be pushing it to go the way I want it to move not in the direction it was stuck.
NIKKI

my birthday oct 8

10/11/06
Ok today I saw the oral surgeon again for the first time in about 3 months maybe 4. I am always amazed by his calm mannerisms. Nothing ever seems to phase him. Today we ran into a gentleman we say there soon after I had my jaw joints replaced. He was coming all the way from Maine to see this doctor in MA. We come from New Hampshire. Anyhow this gentleman was getting quiet a bit of extensive facial reconstruction done on his face and had been going to my oral surgeon now for quiet a few years. This does make you feel good to know someone else is driving a long way to see the same doctor you are. Anyhow I was able to notice quite a difference in his face . It was remarkable and he was quiet happy.

As for me well It looks good. Doc is very pleased with my progression. We discussed my midnight rush to the Er and he said that yeah it was probably just what they told me in the ER a scar band inside my mouth has snapped and cause mass mayhem.(it really scared me to death cause my opening went way wider and it hurt like heck). Anyhow we also talked about the difference in the diagnoses (the fact that it was ankylosis versus osteoarthritis. ) Now I have something to tell my pcp. I wonder if this changes anything with the diagnoses in different areas we have looked with arthritis such as my neck area(humm will be interesting) .

We also talked about the clenching. I have been clenching again at night for a while now. Ack it is horrible. I wake up and my face is so tight. The right side is still not playing nice with me . I feel so lopsided with my healing. Anyhow it is off to the orthodontist for me. Back to a nightgaurd. In a way I an happy about it as I have been wearing one for so many years I am lost without one. I was hoping that I would be able to go without one but alas that is not my fate. If the nightgaurd and then PT if needed doesn’t work to kill the right-sided muscle spasms then we will be botoxing the right side possibly. A fate I would rather skip.

As for the top teeth still hurting he top me time. I am so tired of hearing time. It will take time to feel better, it will take time for you lip to work right. It will take time for things to get better. At least this time he did admit that some of the nerve issues will be there for good. Alas. It is now up to me to finish the repair job on the bionic face. I am finally learning that it isn’t me and my jaw joints but together we are one. ...... and interesting concept when you have something that is so foreign inside of you.

What could be a better birthday present that to realize that you can finally do something that you have sorely missed for the past few years of your life? What is this you may ask well I am not going to tell you just yet. I started my birthday with a haircut. I was honestly amazed while I was chatting with the hairdresser over the new hair cut and we were discussing the fact that I needed my hair short because of the fact I had a neurological issue with my face from a surgical procedure I had. She of course asked what it was . “well I had my tmj joints replaces that is why I have the Hairy Carey lines on my neck” . Well I was very surprised when she in earnest said that she didn’t notice them. She then of course looked and a like wow. They are barely noticeable. Score one for my birthday!!! She couldn’t even see the ear lines. Score two!!
We had a great family day the weather was nice and my face was not as affected by the weather as it had been. It was nice to finally be feeling normal somewhat again. We spent the day visiting several different dams. It was just so nice to just feel mostly like me. I loved being all together and not hindered.

OK so we got fried chicken for dinner. After dinner I was still hungry. We were supposed to go "apple picking and never made it that far. My daughter had been the day before. Well there was this HUGE juicy looking apple. I could not resist. Would I be able to do it or would I end up in the most agonizing pain man can imagine. I took a deep breath and sunk my teeth in. Oh the delicious juice slide down around my teeth. The sound of the apple as my teeth punctured the skin. It was tasting a forbidden fruit. Was this what it was like to bite into the apple in the Garden of Eden? I couldn’t believe it I was actually eating an APPLE!!!!! Without cutting it up. Oh the joy he rapture. I could not believe it. I was so excited. I never in my dreams had thought this day would ever come again.

I honestly feel that I need to exercise my joint some. I tend to keep going back to mush out of habit and when I go out eat some more challenging foods for a few days my joints actually feel better. Then I slide back to mush, and then it hurts to go back to the more challenging foods.

So we stand with me realizing I need to actually exercise the jaw joint. What a concept.
NIKKI

10/15/06
thankfully I do have almost full range of motion. I have lost some of my range with the right lip and some feeling there that t doubt will ever come back. I did have some residual pain after eating that apple......alas it was not a totally pain free thing to do. will I do in again In a heat beat but not all the time. Probably only in the fall when the apples are ripe. otherwise it would be wisest to cut them up.
I have been very lucky so far but to say I was not without my downfalls and side effect it would be folly. I have tried to always be honest with my experience. I still take ty-4 at times for pain and the muscle spasms can drive me crazy especially because they are where they were not before.-NIKKI  Oct 11

well today I saw the neurologist. I don't know if I got anyplace or not. interesting concept. As I expected the EEG was normal. however this does not rule out seizure activity. This is the first neurologist I have seen that feels this way. however sense it has been 3weeks or more sense I have had an"episode" there is no point in doing anything aggressively about them. The current plan of attack is as follow: to set up an appointment with an epilepsy specialist in her office. the reason for this is so that if I start getting another cluster of them then they will possibly hospitalize me to see what is exactly going on. This will include getting brain waves while I'm having an "episode" and watching what is actually going on. this will make it easier to make a distinction between a complex partial seizure, pseudo-seizure or a really bad anxiety attack(sense they started at the hospital this is a good possibility).

Also she has set me up with a doctor for some trigger point injections for my neck/shoulder areas. this will help with the myofacial pain syndrome I have. which in turn will help with the residual muscle issues within the tmj area. yeah. I see him Next Wensday for a consult. as for now life will carry on . If I go another 5 months without an episode I am free to drive again. also she did not want to address the trigonal neuralgia at this time frame so long as I can deal with it for two reasons. It can still get better and the meds can interfere with the "episodes" if they are seizures., henceforth making it harder to get to the bottom of what is actually going on within me. makes sense to me.

so that is what happened today at the doctors .....fun fun fun........
NIKKI

Back to the more serious side of my life........

A few weeks ago I saw the oral surgeon he was quite please with the progess I have made with my bionic jaw joint as I have chosen to call them. He finally told me that some of the feeling I have not gotten back will probably never come back(gee I could have told him that). Anyhow I other than the dreaded muscle spasms I am pleased . He wants me to get a night guard(a splint you wear at night for grinding). Yucko. I have lots of doctors appointment to update those of you that are following that piece of my life.

The jaw joint and pain issues. This week we ran around to several Dr..’s appointments. I saw a pain doc of sorts to replace my old pain doc that my neurologist suggested. I was very surprised that he had the old pain doc records. It was supposed to be just a consult but he ended up doing trigger point injections into the trapezes muscles. Sense having the joint replaced it did effect even the muscles in my neck and downward. As they say the neck bone is connected to the jaw bone. So hopefully over time this will help. He wanted to start out slowly with one set of injections bilaterally and do more higher up if needed . That is cool with me the fewer injections and things they need to do to me the better. Well it worked to some degree the major band of muscle there broke up but it moved causing a horrible migraine the next day and pain elsewhere there after, I am certain when I see him in a few week more injections will follow. He did remind me that the muscles in my face may never fully get over the spasming due to the arthritis being in them This made me re-evaluate how much am I looking at (to be honest I am still aiming for 100 % which is not feasible). Alas, one again I am this doctors first jaw joint replacement as well. He is very interested and what to research then now so I will bring in my business card with the forum that I co administrate.

Then to my dentist whom finds me fascinating because of the surgeries I have had on my face. The ortagnithic and now the joint replacements. However my dentist is awesome. He has had to do a route canal due to the placement of one of the screws of the plates on the top jaw when they moved it for the joint replacements. So we finished that of and I am fixed to go until I can drive again hopefully in Feb(yes that is when we figured my last "episode" was. Seemings as how we can’t figure out if it was a panic attach or a seizure the neurologist feels it could very well have been a panic attack(the psych. says no go figure) anyhow off to the orthodontist whom gives me great news....sense I broke my top retainer I figured out that the muscle spasms had greatly reduced unless I am outside in the cold or talk to much(who me talk to much never) Told me to "let my teeth be free" that they won’t move much now and we will do a night gaurd only if things get worse yippee.

So for now that is the news on the health front of me and my bionic jaws. As the weather gets colder I can feel it in the muscles .......maybe someday we will move someplace warmer for now though Charlie’s mom needs us she is 80 this year and getting over a major stroke.

Nov.11,2006
MY neuro sent me to an eptologist. He doesn't feel that I have Eplipsy either. this week from Wensday to Friday I will have my head wired for constant monitoring to make sure that noting goes on in my sleep . He feels that this is just either Psuedo-seizures(due to stress) or sever panic attacks. MY primary whom I just saw felt what he saw did not resemble a normal type of seizure either and that a panic situation makes sense to him. so we are really hoping that this will be what everyone thinks after this test.

now the new pain doc is awesome I am his first tmj joint replacement. He has yet to have one and he has given me another set of injections right under the head where it meets the spine. I could literally feel it and hear it on the right side. this was not my idea of fun. the left side was ok . Well there were a few days of misery and pain the pain shifted around and made me horrible for days. now it seems that it has leved out now. so I am hoping this will take care of things. He didn't want to shift my muscle relaxants because then he wouldn't know which of the two caused things to get better.
NIKKI

Nov.13,2006
My face has gone though some of it’s most wildest changes yet!! The past few weeks sense the pain doc did the injections into my neck under the head to relieve the newest version of the migraines. Right after he did this my whole upper body went through throws of agony like never before. To the point of nausea and new headaches. My neck hurt in new places.  It was miserable. I was wondering if it did me more bad than good. Top it off with a few sleepless night and I felt like toast. 

after that came about 2 days of this feeling like my face was literally  plugged into something electrical.  My face was just vibrating all over.  I was so exhausted all I wanted to do was sleep but my face was playing Horton hears a who and it was saying”We are here. We are here We are Here”. It was driving me loopy.  This went on for about 2-3days.  Then the next thing that happened was my lip where I had no feeling previously and where it had not been working started to hurt like heck.  OK now I am thinking this is odd. Now every time I have gotten feeling back in my face the thing has to do this really bazaar wacko thing where it just wigs out on me. So I figured by now I must be getting some nerve regeneration back.  Yeup I have sensations back. Yet it is odd. I was able to feel the cold bottle was the first thing I noticed in the morning after the day it hurted all day.   Then I kissed hubby to be sure it wasn’t just a wacky thing. Nope feeling.  Well what I have now is spotty feeling.  I have hot spots where the feeling is too much and it doesn’t like being touched. This is exactly in the center of the lip. what a bad place for that and right in the corner too. And I have numb spots. And normal.

Now does the lip work better?? Interesting I didn’t think so but on one note I can now whistle and I couldn’t before so Maybe it is. It still pulls to the right horribly when I am tired.

Now the trigger points are working and I am finally other than feeling extremely tired lately feeling better. So that is the newest. On me!!

Nov,14,2006
Stitches............. they are an insane nutty thing with my body and I am really tiering of them. Between he past 6 days I have pulled out 2 more stitches....... I can't figure out why they have not already come out. I crumba. this is going to be haunting me forever I think I had no clue that internal stitches could live forever inside the body so long. and my blasted scars are itching horribly again I can't stop scratching them which in turn will mean opening them up if something doesn't give way soon. Why oh why is this going on? I wish i knew the answer to this one thing that has plagued me from the very beginning of this journey. the itchy scars......and the stitches that emerge..... if I could get and answer for These two things I would fee so much happier.

now if someone could find away to tie up my hands.... so I scratch my face off.

12/05/06 at 11:11:40
well,
I found out just how badly my jaw joints can react to stress. wow .  after a very stressful situation that had my in tears for about 2 days my jaw went retro so badly I couldn't believe it.  I the pain was beyond belief. I was back on the pain killers every 8hours.  the muscle relaxants were not even touching the muscle spasms. my face became so pulled to the right that everyone around me was surprised to see that I was looking like Angelic Pickles again. sigh.  So I guess that no matter how far out of the woods we may think we are we may never really be out of the woods because our faces are so likely  to feel the changes in our bodies and minds to the extent that we do.  It took me almost a week to get my face back to normal after this.  It was definitely not one of the more pleasant feelings.
 
even as I sit and write this there are stress factors in my life right now and my face is feeling them very much.  I think more so than I am.  ack.  my muscles feel them more NOW than they did before surgery. this is something I am finding a bit odd. I did have to cancel my appointment with my pain management doc.  this is rescheduled for 3 weeks away so I won't be able to discuss it with him until then.
NIKKI

12/06/06 at 14:27:36    my face still has not recovered from the bus fiasco of last week.  This was my nightmare of the bus route come true.  the only blessing about it was that it wasn't a super cold day, however it was windy and I still have the TN issues on the right side of my face.  my face had just started to recover from the previous issue that had me crying for  2 days when this occurred.  anyhow we went out for the bus at the normal 11:30 time on Thursday  and by 12:10 the bus had yet to arrive at my house. I left Kentin outside and went inside to retrieve the portable phone and look up the schools phone number and went outdoors to talk to the school sectary to find out what had happened to the bus.  She put me on hold and called the bus company jut to have them tell her that they came by my house but I was not outside.....excuse me??? um wait that was wrong.  I had been out side for a total of more than 45 minutes by the time the phone call had been completed.  So I had a screaming Kentin after he missed 3 days of school because of being sick and this was "his" day to be special helper.  the bus driver told them she came up our road when she never did because they varied the route due to road construction and she would have had to back tract a little bit.(by the way another child went without being picked up to).  so now my face is horribly pulled to the right when my husband comes home..............he is upset as all get out calls the bus company the next day the get almost the same response yet to be told that "I must have been inside".....hello The kid was outside and I doubt that both of us parents were inside at the same time plus the other mother called on a cell phone............. anyhow I drove Kentin to school cause he was so upset.  
my face is still pulled to the right. there is pain in the joint from it.  I am so mad at the bus driver.  I can see that the rest of the year will be fun.  she is so variable at her times that she comes that I am outside with him from anywhere from 10-20 minutes.  oh yeah she doesn't abide by the original rules she NEEDS to see me.......and she has other issues.  I just don't trust this lady to stop if I were inside the house at the door now obviously............ sigh what a very LONG winter it will be.

Dec.14,206 0:02:38    
I am realizing now how intertwined my bipolar and my jaw are becoming. Sigh, My bi-polar issues have been wacky now for a few weeks and as I have been struggling to get them back in order. my face has been suffering for it.  I must say I have fallen off track with many of the things that have helped me keep my face in good condition.  I haven't been doing the trigger point releases. I haven't been pushing my self to  eat foods the way I was.  
 
I seem to be starting to develop some sort of itchy rash to the codeine. I am not sure if this means I may not be able to take it anymore   If not then what does this leave  me with for a pain med on my bad days?  I do have a doctors appointment this Friday with the Pych and the primary care doc.  Hopefully this will get some things taken care of.   MY 42 hour eeg came back normal. this means it is most likely NOT epilepsy.  This is good but this is bad because now we don't know anything that is going on. Is it a Pseudo-seizure, a panic attack , or syncope ? So I will have to have the Primary refer me to a cardiologist to have my heart checked out because Cardiac issues run in my family.  
 
My face is pulling to the right big time the past 2 days.  However I am finding myself getting back into the Christmas mood so that is good.
NIKKI

 Dec 20.2006
e gads sickness stinks. I have had a stomach virus that need to go far away.  this has really knocked the crap out of me.I threw up about three times last night thank god for the anti throwing up meds!!!. anyhow my face is in severe rebellion. it hurts so bad I want to cry.  The left side of my face is actually hurting now . what is with this?   I would love to goto the ER for some sort of pain meds but I can't  we have no money to do that.  Hopefully tomorrow maybe my new pain doc will have an idea??   I have about a 101 or above fever which means hallucinations for me. oh joy oh rapture.  we have yet to have a Christmas here where we have yet to NOT be sick either right before or right after.  
 
 This it a tremendously painful Christmas for me too as the full impact of the loss of my mother is now hitting me square in the face.   The realization that my kids saw their Nana for the last time on Christmas because they were sick and I am sick is just not settling right with me.  I may be able to get over this whole thing if We were not sick and Charlie's mom hadn't had a full fledged stroke the same month my mom died.    This just brings home to me how short time is and how important it is we spend the Holiday with her. It didn't help either that my dad went to my sister's. Last year at this time I was so swamped in everything I had to do to get ready for surgery on Jan 10 that though I missed mom it didn't hit the way it is this year . I know odd.  
 
Anyhow my face is so mad at me.  My face is hurting like hell.  I am not sure what to make of this new development.  I am taking the muscle relaxants  as my stomach will hold them down. the ty-4 or the headache med depending on which hurts more(they both have ty in them).  I feel like a mac truck has hit me and left no forwarding address.
 
the lack of money we have has really added to the stress of everything. I now that there are people worse of than me but I just can't help but think of the disappointed look on my sons face if we can't afford to get him a monster truck for Christmas.  I have made my gifts for the family and this is fine with me.  I have gotten them all done except for a final coat.
 
I just hope that I don't throw up any more and that I can regain my opening to 3 fingers again. I have also been unable to chew some of the foods that I was able to eat before.  somehow it just seems so unfair right before Christmas when  all the good food is out.  sigh. but hey what can ya do right?
NIKKI Tongue

Dec 20, 2006
I think it was about a week ago I pulled yet another stick out of the left side of my body, it was the incisions under the chin bones.    I can't imagine how long these things can last inside the human body!!! jimmy.  MY friend that used to work for an Oral surgeon said that they used them for multiple layers including muscles and so forth so they could be a while if they did not dissolve for the under layers to work their way out to the top.  All I know is that one day my face will be fine the next it will itch I will have a lump and then it will ooze out a stitch very very odd.  for some reson too my body has in some places made scare tissue around them.
 
ack.  I hope it ends soon because these buggers give me new little scares like acne scares around the scare itself. actulally they are worse than the scare itself.
 
NIKKI the stitch spitting weirdo.

dated jan 1.2007,
as the new year rang in I am left pondering how much my life has changed. at this point last year I was busy preparing for surgery in just 5 days. I would be having surgery on jan 6,2006.  I was scared to death. It would be the first major surgery I would undergo without my mom. she was there for me through my last set of jaw surgeries. MY dad was going to met us in Boston. I was scared that if I saw him after surgery would I automatically expect mom to be there to as it had not yet been a year sense she died. how much would my face change? would I still look like mom?  I was still finding reasons to get out of this surgery. I still had at this point 3 pre-op appointments. one with the Oral surgeon, one with the hosptal and one with the orthodontist. so much to do.  I was a very scared person.

Now I look back over the year,
It has been a hard one in many ways. I was not at all prepared for the long haul I had before me. I had at first only a few people that had had joint replacements that I knew of and only one that had been successful and supportive during the most important first few months of my recovery when I really needed it.  If it were not for my friend Jackie I don't know what I would have done during the first 3 months until I came across this forum(tmjsurgery -chat) where there were other people had had replacements and knew what I was going through.

In Feb I had barely recovered  somewhat when my mother-in law had a major stroke and my husband had to take a lot of time to take care of her(rightly so). this left me struggling in many area though mentally and physically.  I have come a long way.

I will write more ON the 6th when I will really look back to what the journey has been from the whole year from start to finish of a full year.  But I am so glad to say I still look like mom..........

Jan 3,2007
am absolutely amazed at the fact that I cannot get this date into my head!!! ever sense I had the surgery I have NOT been able to get it through my skull what date it happened on.  At first Charlie and I argued it was the 12 which was the day I came home then it was the 9th which was my horrific pre-op day.  somehow now it has become the 6th which was my pre-op appointment with the oral surgeon?? Why in the world can I NOT get the exact date of this surgery into my head......this is something that truly befuddles me??  Is there a piece of me that wants to deny the fact I actually went through all this??  
 
The events leading up to my surgery were a complete mess. it is something that is NOT cataloged here or anyplace else for that matter.  Anything that could go wrong went wrong.  You name it I was supposed to give a pint of my own blood just in case well I couldn't my insurance wouldn't pay for it., I was supposed to have molds done but the OS didn't covey that to the orthodontist.....thankfully my orthodontist decided to do them anyhow deciding to err in the side of caution.....otherwise they wouldn't have been done.(see my Os spends almost as much time making a splint that he using during surgery to make sure you jaw is in the right place as he does doing surgery). I didn't have a pre-approval letter in my hand before surgery. The doctors that were attending the surgery and were doing the prop stuff at the hospital on the 9th didn't have record of me having a appointment with them.  It just seemed like this surgery was not going to happen.  I was looking too for a way out because I was scared to death of having it.
 
I just find it interesting that I cannot remember the date..so does Charlie........

Jan 9, 2006,
The clenching I have been doing lately is really taking a tole on me. I am going to try first with a store bought splint but alas I am afraid that I am going to have to really get a night guard. I have been able to go without the patches on my cheek now for more than a night at a time which is a blessing but with cold time being here and my sinuses building up my right ear is now back to plugging up again. What a mess that is going to be. The one thing I will NEVER EVER be able to get used to is the EAR ISSUES. Ack. They really really stink. I I have been spending a lot more time focused one my family and this is good. I am not all focused on my face.  It seems that less days are centered around my face than they used to be unless I am stressed out.  But It does seem that lately some of my bi-polar issues have been brought back up Of course getting used to a new Psych is hard.  We added a new med and it is helping it will be only for getting through the Holidays and until Feb is over. But it has helped a lot.
But with the love of my husband and my kids I can get through anything my life has to offer me.
NIKKI
Jan10,2006
I can hardly believe a whole year has gone by sense my surgery.  Wow. MY joints are a whole year old today. Happy birthday to them. I can’t get over the overwhelming adjustments I have had to make in my life this past year.  I did not make this decision  lightly.  Right before surgery there were those people that warned me of the dangers of joint replacements.  Their words were headed though they may feel they fell upon deaf ears. I knew full well I was taking a step that I would not be able to reverse.  However with the amount that my jaw was locking up. The fact that I was unable to eat most foods. And the fact that my opening was (at least in my mind) compromised,  and I had run out of conservative options it was time to make a choice to do something about it. The damage within my joints was so bad it was causing me to have sleep apnea.  MY orthodontist sent me to what was one of the best Oral surgeons in Boston.  My knowledge of joint surgeries served me well because he and I agreed that just about anything else he would do would lead me to the path of joint replacements and the more times you go into the joint the more chances of scare tissue build up and nerve damage. Nerve damage can’t be repaired.

So I took a huge step of faith and I went ahead and I did the joint replacements knowing they would either be a blessing or a curse. They were a blessing. I did my research and went with the concepts. A custom built joint.  I have full range of motion.  I have had glitches along the way. I have had muscle issues and nerve issues esp. on the right side which was my worse side to begin with.  However I am glad I have done this I don’t regret having made this step in the least.

I will start with my issues I still have. I am constantly fighting with the muscles on the right side of my face. They are very tight. Esp when I am stressed.  Many have said you may trade in one issue for another. Even my surgeon said that he could not fix the muscle issues. We were hoping that by correcting the bite that the muscles would settle into their “normal” position. However nothing in life comes with a guarantee.  Esp. this type of surgery.  Well they have yet to do that. Over the past year they have settled some.  The new patches I use have helped the most out of everything so far.
The nerve issues are still there. I still have sensitivity on the right side of my face. I have “hot spots” that hurt when touched. I have other spots that I can’t feel at all.  However they too are getting better over time.

Now to the benefits. I can open my mouth wider than I can ever remember opening. I can eat most foods without a lot of pain. I have been able to bite into an apple(though I don’t recommend it on an all the time basis). I am not taking narcotics for pain all the time. I rarely take them at all any more.  I can cook a normal meal and eat it with my family. I have missed that. I don’t have to worry what other people are making when I go someplace to eat.

When I look back I am glad I have made the choice I have. Is this the choice for everyone No it is not. It should be a last resort when all other choices have failed. When you have tried everything conservative.  My doctor never mad any promises that it would cure my pain. I was lucky there.

The one thing I really did not know was that it would be such a very very long process.  I know that there were people that told me it would be a full year to heal, but I thought I was super mom and could heal faster than that. Well I was wrong.  It has taken me the full year and maybe a bit longer than that. But it is OK. I have learned to hand it over now to God once again because it isn’t in my hands.
NIKKI.

Jan 30, 2007
I can't believe that an entire yeah has come and gone. the weather has gotten colder finally and my joints are finally starting to feel the cold weather. There have been some very windy days. the wind will cause the jaw joints to seize right up. Thankfully the lidocaine patches work great. these keep me from needing strong pain meds.  I have been going to the chiropractor on a regular basis. This helps by keeping my neck in line. I will be veru happy when we get my neck and shoulder muscles 100 percent relaxed. however I don't think this will happen until the spring and summer comes around again.  I feel very blessed to have the family I do.  I think my face has finally gone into what will be it's permanent shape and I am very pleased with it. though I am still getting some stitches out sigh.  I can't wait until all the internal stitches are gone. I did take a nasty fall on the ice and hit my chin on the ground. thankfully the joints were uninjured.  I am very pleased that I went with the concepts.

However I do want anyone reading this to know it is a last step.  However I have no regrets that I did this procedure there are successes out there and I am one of them.

Feb 21, 2007
this has been one hell of a month. I have been sick as a dog. I have had something that caused me to do a whole lot of coughing. this coughing has caused me a lot more pain than I ever imagined. It caused my whole face to tense up and lock up muscle wise.  I hope to never go through something like this again anytime soon.  The coughing caused me to be in about as much pain as just after my surgery. sigh. This was not a simple cold but a cold that had a very vicious cough.  The cold/flu lasted about 2 weeks and now I am just feeling the after effects of it.  the muscles are really in revolt. I am back to soft foods for awhile. I am just really glad that this cold/flu did not hit here last year.  I can't imagine getting that right after my surgery it would not have made life fun. So now I am wearing the patches every night and taking pain meds and waiting it out for the face to settle back out. I still know I have done the right thing.

Feb 28,2007

well thankfully things got better. the major muscle aches in my face turned around and they  have settled back down. my face is semi back to normal.  My kids went to the orthodontist with my kids today and he is going to make me another night guard because I am clentching. i can't figure out why I do this but alas we need to get this stopped.  Dr Walker though is very good. I can't say enough good about him.  He has been like a God send  to me.  I can't imagine what things would be like without him in my life.  He has been very patient with me over all these years..  I am still greatful that I have done what I have done.. My story will now be continued on the blog page.

love laughter and prayers everyone NIKKI