Re: Hi All....Can Someone Calm my Fears?? - to

November 11, 2004

Hi ,

I wish I could calm your fears but maybe it will help to know that

you are not alone. I was in a very similar situation as yours. I

have had TMJ problems most of my life. My jaw started locking when I

was about 8 or 9 years old because the joints had never formed

correctly. As a result my lower jaw was very small and I had a

significant overbite making the joint problems even worse. When I

was in my teens and twenties, there really wasn't any other

treatment available other than wearing a splint.

Unlike you, though, I didn't have any problems with headaches. My

pain was isolated to the joints.

To prevent my joints from deteriorating more and to preserve my

teeth, a TMJ specialist recommended that I go through orthognathic

surgery to correct my bite. After 5 yrs in braces, I was finally

ready for surgery. My surgeon did warn me that the surgery could

possibly make the joint worse but hopefully it would improve. He did

everything he could to minimize stress on the joints. We did the

surgery in two stages. The first one gradually advanced my lower jaw

17 mm by using distraction osteogenesis and the second one moved my

upper jaw 5 mm. Afterwards my bite was perfect for the first time in

my life but unfortunately, I was one of the few whose TMJ problems

got worse.

To make a long story short, what little was left of the condyle on

the left " melted " away and the right joint fused and had avascular

necrosis (dead bone). I ended up going through three more surgeries

to reconstruct the joints. I'm only 37 so I'm too young for

artificial joints so the TMJ surgeon again used distraction to

create condyles and grafted part of the temporalis muscle (a scalp

muscle) into the joints to create cartilage. I still need one more

surgery (just a simple Lefort) to correct the open bite that

resulted after the joint reconstruction.

I still have pain but it's now a lot better. I take Celebrex to

maintain my new joints. I can't take muscle relaxants so my surgeon

injects Botox into the jaw muscles instead. After a long time on a

liquid diet, I can now chew soft food which was about all I could do

before the surgeries anyway so I haven't had any improvement there.

Despite everything, I don't regret having the orthognathic surgery.

I would have needed the joint reconstructions anyway. It was just a

matter of time. Possibly if I had had the surgery 15-20 years

earlier (if it had been available then which it wasn't), my joints

wouldn't have deteriorated quite so much and I would have had a

better outcome.

I wish you the best and hope that by getting your bite taken care of

now, you will avoid the kind of joint problems I ended up with.

>

> Hi, I am new to this group and joined today after finding it when

> doing a Google search. I felt a little calmer after reading some

of

> the threads and conversations going on between the other members.

>

> I am 23 years old and scheduled to have surgery Dec 15th. I have

TMJ

> and arthritis in both joints. Significant breakdown of the joint

on

> my right side. I have been in a splint for over 3 years and have

> gone from Dr to Dr. I take arthritis medication and muscle

relaxers

> everyday...sometimes I have to chase these with a pain

> medication...Butabitol..to make my migraines go away. I have a

> significant gap between my upper and lower teeth...I haven't been

> able to chew food without a splint for 2 years because my teeth

don't

> touch. My surgery is going to be a one piece upper lefort

1...with

> sliding genioplasty to fix lip tension. I am worried that I am not

> doing the right thing...however, the Drs and I see no other way

out

> of this splint. I have a great surgeon...and I trust him...I am

just

> having some doubts. After battling with insurance for a

year...I'm

> really just exhausted from all of this emotional upheaval.

>

> I know there are several of you that have had this procedure

done.

> If there are any words of encouragement I would greatly appreciate

> it. Did any of you go into the surgery still in pain...and come

out

> still hurting? I am told by my Dr that what I feel now...I will

> still feel after and I will still need all of my meds. Any

> experience would be helpful...

>

November 11, 2004