Re: Introduction + anyone here have TMJ replacement joint - To

[Guest guest]

Hi ,

I did have bilateral TMJ reconstruction and orthognathic surgery but

not at the same time. I initially had just the orthognathic surgery

to try to stop the deterioration of my joints (I had congenitally

abnormal joints and lower jaw to begin with that got a lot worse

because of unusually destructive arthritis). My joints actually got

worse. My surgeon tried to minimize any procedures on the joints

since the more invasive the procedure is, the less chance you have

of ever having normally functioning joints. Within a year however,

my joint was fused (ankylosed) on the right along with avascular

necrosis and the left condyle was gone altogether. We had no choice

but to replace the joints at that point.

He gave me the option of either artificial joints or rebuilding the

bone using distraction osteogenesis. He recommended against the

artficial joints because of my age. I was only 35 at the time and at

this time, prosthetic TMJ joints last at best 10-15 years so that

would mean multiple joint replacements in my future. I opted for

distraction because it can theoretically last a lifetime and there

were no permanent foreign materials in my jaw. I underwent the

surgery one year ago in January 2004.

Also, my overbite and open bite had relapsed because of ongoing bone

loss so we knew that I would need more orthognathic surgery. My bite

was partially corrected by the joint reconstruction but my surgeon

didn't want to do the orthognathic surgery simultaneously. He was

concerned there would be some " settling " around the joint and he

couldn't predict where my final bite would be. He was right.

Initially my bite was pretty close but now I have a 6 mm open bite

again. It hasn't changed over the last 6 months so we think (and

hope) my joints have now stabilized. I'm still going to put off the

final orthognathic surgery (a simple Leforte procedure) because the

longer we let the joints heal, the less chance of relapse there will

be. Unless something changes, I'll probably wait another year.

My joints are well healed now but I'll still never have normal joint

function. It's improved a lot. I used to only be able to slurp

liquids through my very limited opening (6 mm max) and was in

constant pain. Now I can chew a soft diet (small amounts at a time

before the pain gets bad) and my pain is 90% gone. I'll be on some

form of anti-arthritis drugs for the rest of my life to try to

maintain my new joints. Despite everything, this is a huge

improvement for me and I've even managed to gain a few pounds.

Everyone's situation is different and every surgeon seems to have a

different treatment approach. If your surgeon recommends doing

everything at once and using prosthetic joints, then that probably

is the best treatment for you. Good luck with everything.

>

> My name is , I am in Boston, and was referred to an oral

> surgeon by my dentist, who said I needed to look into fixing my jaw

> misalignment. My front teeth do not meet, creating an " open

bite " .

> My lower jaw and chin are too far back, also.

>

>

> I've just been to my initial consultation with my oral surgeon. He

> says that due to Juvenile Rhumatoid Arthritis, my TMJ joints are

not

> strong enough to withstand the surgery I need (lower jaw being

moved

> forward nearly an inch). So, he wants to put in prosthetic TMJ

joints

> at the same time as the lower (and upper) jaw surgeries.

Apparently,

> I also have a serverly constricted airway which is likely causing

> severe sleep apnea - and I thought I was just tired from my 4

kids! He

> said my airway is 90% constricted - most people have approx. 11

> millimeter opening, mine is approx. 1 millimeter.) Hmmmmm. that

is a

> lot of information in a tiny paragraph. :-)

>

> I am just interested to know if anyone has had a similar surgery?

> Also, my OS is Dr. Cottrell with BU Medical Center. Has anyone had

> experience with him?

>

> Thanks! I am so glad there are Yahoo support groups for

EVERYTHING!! :-)

[Guest guest]

> >

> > My name is , I am in Boston, and was referred to an oral

> > surgeon by my dentist, who said I needed to look into fixing my jaw

> > misalignment. My front teeth do not meet, creating an " open

> bite " .

> > My lower jaw and chin are too far back, also.

> >

> >

> > I've just been to my initial consultation with my oral surgeon. He

> > says that due to Juvenile Rhumatoid Arthritis, my TMJ joints are

> not

> > strong enough to withstand the surgery I need (lower jaw being

> moved

> > forward nearly an inch). So, he wants to put in prosthetic TMJ

> joints

> > at the same time as the lower (and upper) jaw surgeries.

> Apparently,

> > I also have a serverly constricted airway which is likely causing

> > severe sleep apnea - and I thought I was just tired from my 4

> kids! He

> > said my airway is 90% constricted - most people have approx. 11

> > millimeter opening, mine is approx. 1 millimeter.) Hmmmmm. that

> is a

> > lot of information in a tiny paragraph. :-)

> >

> > I am just interested to know if anyone has had a similar surgery?

> > Also, my OS is Dr. Cottrell with BU Medical Center. Has anyone had

> > experience with him?

> >

> > Thanks! I am so glad there are Yahoo support groups for

> EVERYTHING!! :-)

[Guest guest]

Hi ,

It sounds like you are starting off very similar to how I did. I

started the process in 1994 when I joined the military when I

finally had the time and resources to do something about my bite. I

had had a lot of problems with my joints locking and pain throughout

my childhood and teenage years but it seemed to get better in my

20's. Although looking back, I now realize that the

frequent " earaches " I had then and thought were from recurrent ear

infections (despite normal ear exams) were probably from my joints.

I wasn't able to chew much then but that was mainly because only two

teeth touched in the back and I did feel discomfort when I did try

to chew something more tough like steak.

When I went in for my first dental exam in the military, they

immediately referred me to the TMJ specialists. They also were

amazed I didn't have more pain then given the deterioration of my

joints. They did a CT scan that showed mandibular hypoplasia and

severely atrophic condyles. The TMJ specialists and the oral

surgeons (as well as my pediatric dentist and TMJ specialist) were

convinced that doing orthognathic surgery was the only way to stop

further deterioration. The orthodontists, however, were very

reluctant to touch me because they thought changing my bite would

put too much stress on the joints and make the situation worse. They

had also never seen a bite as bad as mine. After a lot of back and

forth and convincing by the surgeons, I finally got the braces on in

1996.

To make a long story short, my time in the military was up, I moved

to another state and had two babies... I finally had orthognathic

surgery in 2002. My new surgeon in North Carolina (who exclusively

does orthognathic procedures and has written several textbooks) was

also concerned about my joints so he took every precaution to

protect them. I needed a lot of mandibular advancement which would

have required bone grafts and which would have put a lot of stress

on the joints and soft tissues. He decided to gradually advance my

lower jaw using distraction and then do the upper jaw in a separate

surgery two months later. The lower jaw surgery was in Sept 2002 and

the upper in Nov 2002.

Despite everything, my joints did get worse. I never regained any

jaw opening afterwards beyond 6 mm and the pain was bad. An MRI

showed avascular necrosis and ankylosis so the surgeon referred me

to another surgeon who specializes in TMJ surgeries. He first

attempted joint arthroplasty in which he took a part of my

temporalis (scalp) muscle and grafted it into the joint. That didn't

last long either so we had no other options left but do the joint

replacement. That was done in Jan 2004.

Before the joint reconstruction, my surgeon did make me go to my

family doctor who did a full rheumatologic workup. He said my joints

looked like someone who had JRA or lupus but all my blood tests came

back negative.

By the way, I had all my surgeries done in Charlotte, NC. Ask away

if you have any more questions or email me at minirascal@....

> >

> >

> ,

> Thank you so much for your response. Since this appointment was my

> first, the OS and I didn't go into all of the details of exactly

what

> the best course of action would be. In fact, I guess it wasn't

> completely clear that he would do all of the procedures at one

time.

> Although that was implied.

>

> Right now, I am going to see a Rhumatologist to figure out all of

the

> details on the arthritis - managing it. Also, he wants me to get

the

> sleep apnea test. Lastly, I have a prescription for an MRI. He

said

> with those bits of information we can further decide how to

proceed.

>

> He did say that I had other options besides the complete joint

> replacement - I think similar to what you had, he said I could do

just

> an upper jaw surgery that *would* get my teeth together, but

wouldn't

> address the other concerns of deteriorating joints and severely

> constricted airway. I am also young - only 27, and I have concerns

> about the total joint replacement. Repeating this procedure every

10

> years is *not* appealing. I have no pain, currently, which my OS

said

> was unusual due to the extent of my jaw deterioration. My TMJ

joints

> were narrower then the width of a pencil. My OS seemed to feel

that

> doing one surgery might be better then doing several, and I do see

the

> rationale in this. He said the fact that I am young and healthy,

and

> haven't had other procedures done was to my advantage.

>

> I am wondering where you had the surgery done? Also, how long ago

did

> you have the joint replacement? And you had the first procedure a

> year before that? I am just trying to imagine what your timeline

of

> procedures has been.

>

> Thanks again for taking the time to respond to my post. I'm sure I

> will have lots more questions in the next several months!

>

>

[Guest guest]

---

WOW! It does sound like we have a very similar situation! My biggest

fear/concern right now is that I will go from having virtually no

pain, to having lots of pain and limited jaw functioning. Like you

did, though, I do have some problems (migraine headaches, pain when

moving my jaw from side to side, inability to chew food as only 4

teeth touch, etc...). It is just scary thinking about making my

situation worse.

Looking back, do you wish you would have had the artificial joints put

in first, rather then trying to do the other procedures? Also, what

type of artificial joint did you have put in? My OS wants me to go

with one called TMJ Concepts that is specifically fitted to my face.

Is this the type you have?

Thanks again for taking the time to talk with me.

In orthognathicsurgerysupport , minirascal2002

<no_reply@y...> wrote:

>

> Hi ,

>

> It sounds like you are starting off very similar to how I did. I

> started the process in 1994 when I joined the military when I

> finally had the time and resources to do something about my bite. I

> had had a lot of problems with my joints locking and pain throughout

> my childhood and teenage years but it seemed to get better in my

> 20's. Although looking back, I now realize that the

> frequent " earaches " I had then and thought were from recurrent ear

> infections (despite normal ear exams) were probably from my joints.

> I wasn't able to chew much then but that was mainly because only two

> teeth touched in the back and I did feel discomfort when I did try

> to chew something more tough like steak.

>

> When I went in for my first dental exam in the military, they

> immediately referred me to the TMJ specialists. They also were

> amazed I didn't have more pain then given the deterioration of my

> joints. They did a CT scan that showed mandibular hypoplasia and

> severely atrophic condyles. The TMJ specialists and the oral

> surgeons (as

well as my pediatric dentist and TMJ specialist) were

> convinced that doing orthognathic surgery was the only way to stop

> further deterioration. The orthodontists, however, were very

> reluctant to touch me because they thought changing my bite would

> put too much stress on the joints and make the situation worse. They

> had also never seen a bite as bad as mine. After a lot of back and

> forth and convincing by the surgeons, I finally got the braces on in

> 1996.

>

> To make a long story short, my time in the military was up, I moved

> to another state and had two babies... I finally had orthognathic

> surgery in 2002. My new surgeon in North Carolina (who exclusively

> does orthognathic procedures and has written several textbooks) was

> also concerned about my joints so he took every precaution to

> protect them. I needed a lot of mandibular advancement which would

> have required bone grafts and which would have put a lot of stress

> on the joints and soft tissues. He decided to gradually advance my

> lower jaw using distraction and then do the upper jaw in a separate

> surgery two months later. The lower jaw surgery was in Sept 2002 and

> the upper in Nov 2002.

>

> Despite everything, my joints did get worse. I never regained any

> jaw opening afterwards beyond 6 mm and the pain was bad. An MRI

> showed avascular necrosis and ankylosis so the surgeon referred me

> to another surgeon who specializes in TMJ surgeries. He first

> attempted joint arthroplasty in which he took a part of my

> temporalis (scalp) muscle and grafted it into the joint. That didn't

> last long either so we had no other options left but do the joint

> replacement. That was done in Jan 2004.

>

> Before the joint reconstruction, my surgeon did make me go to my

> family doctor who did a full rheumatologic workup. He said my joints

> looked like someone who had JRA or lupus but all my blood tests came

> back negative.

>

> By the way, I had all my surgeries done in Charlotte, NC. Ask away

> if you have any more questions or email me at minirascal@a...

>

>

>

> > >

> > >

> > ,

> > Thank you so much for your response. Since this appointment was my

> > first, the OS and I didn't go into all of the details of exactly

> what

> > the best course of action would be. In fact, I guess it wasn't

> > completely clear that he would do all of the procedures at one

> time.

> > Although that was implied.

> >

> > Right now, I am going to see a Rhumatologist to figure out all of

> the

> > details on the arthritis - managing it. Also, he wants me to get

> the

> > sleep apnea test. Lastly, I have a prescription for an MRI. He

> said

> > with those bits of information we can further decide how to

> proceed.

> >

> > He did say that I had other options besides the complete joint

> > replacement - I think similar to what you had, he said I could do

> just

> > an upper jaw surgery that *would* get my teeth together, but

> wouldn't

> > address the other concerns of deteriorating joints and severely

> > constricted airway. I am also young - only 27, and I have concerns

> > about the total joint replacement. Repeating this procedure every

> 10

> > years is *not* appealing. I have no pain, currently, which my OS

> said

> > was unusual due to the extent of my jaw deterioration. My TMJ

> joints

> > were narrower then the width of a pencil. My OS seemed to feel

> that

> > doing one surgery might be better then doing several, and I do see

> the

> > rationale in this. He said the fact that I am young and healthy,

> and

> > haven't had other procedures done was to my advantage.

> >

> > I am wondering where you had the surgery done? Also, how long ago

> did

> > you have the joint replacement? And you had the first procedure a

> > year before that? I am just trying to imagine what your timeline

> of

> > procedures has been.

> >

> > Thanks again for taking the time to respond to my post. I'm sure I

> > will have lots more questions in the next several months!

> >

> >