Re: To on Jaw Surgery

[Guest guest]

Fran, I have no intention on getting the jaw surgery. I've been told this before

but I am not doing it until I can't eat anymore. All I really want is the hip

surgery so that I can be normal again!

Thanks.

[Editor's Note: , I don't remember where you live but if you are near

NYC, we have an entire hospital, the New York Hospital for Joint Diseases,

devoted to arthritis and orthopedic issues. It is among the best in the country

in these specialty areas. You might want to consider seeing some of the leading

doctors in this field if the pain in your hip is that bad. There, too, surgery

will not halt the progression of the disease into other parts of your body so

you still need to consider what to do about that. Kathy F.]

Fran Mishler <fran@...> wrote:

Dear ,

Please what ever you do, get at least 3-4 opinions before you have jaw

surgery. I know so many people who are so much worse off because of

surgery, and I'm one of them. For me, my jaw was the first place PA hit,

though no one realized this for about 3 years. In that time, my jaw joint

was almost completely destroyed on the right side and the left side isn't

far behind. I saw two surgeons who couldn't' wait to operate, and one was

right after I had just had an arthroscopic surgery done that made everything

much worse.

I finally went to Shands in Gainesville Florida, which is one of the best

dental schools in the country. I saw Dr. Dolwick there, who has written the

several teaching books on how to perform jaw surgeries. They still use his

books at that university. He told me to wait as long as possible before I

have surgery on my jaw. Basically no one can guarantee you that you will be

better off. The most you can hope for is remaining even as far as the pain

goes. I go to see him now usually once a year to have my jaw X-rayed and

to be reevaluated. Every time, his advice has been to wait. Right now jaw

surgery doesn't have a good outcome as a rule, and a lot of surgeons do the

surgery who shouldn't.

When my pain was at it's worse with my jaw I was nearly out of my mind with

pain. I ended up in pain management, which has saved my life. My pain in

my law has gotten better once I finally left the jaw alone and didn't try to

fix it anymore. I can eat steak and almost anything else. I mainly have to

watch how wide I open my mouth. Obviously I stay away from gum and chewy

candy. If I over do anything, I know about it almost within 30 minutes, so

I do baby my jaw now. If you do decide on surgery, just make sure you find

someone who does the surgery all the time, and ask to talk to some of his

patients so you can confirm the fact they are feeling better. Otherwise, a

teaching hospital is a great place to find out the latest info on jaw

repair.

I wish you the best and I hope you don't need the surgery. The recovery

time and physical therapy is very intense and I've been told really painful.

It's another reason I haven't rushed to have more surgery. The following is

a good site for jaw info if you need to read up on the whole TMJ problem.

Take care and I hope I haven't scared you. I just worry that people will go

through too much pain and not be any better off in the end. Sincerely,

Fran

http://www.tmj.org/index.asp The TMJ Association

[Guest guest]

Hi Fran,

I have tmj problems but no one has told me it was pa..How did the pa get

diagnosed in your jaw? I have believed that has been my problem ther for a long

time..I have had jaw problems since 1989..I have had surgery recommended which I

have declined everytime..Your post reaffirmed what I felt in my gut..I would

hate to think that pain could be worse..

This was the first place I had pain..I now have it in my hands, feet, back and

knees..as well as my jaw..

Thanks for the advise!!

Vickey

Fran Mishler <fran@...> wrote:

Dear ,

Please what ever you do, get at least 3-4 opinions before you have jaw

surgery. I know so many people who are so much worse off because of

surgery, and I'm one of them. For me, my jaw was the first place PA hit,

though no one realized this for about 3 years. In that time, my jaw joint

was almost completely destroyed on the right side and the left side isn't

far behind. I saw two surgeons who couldn't' wait to operate, and one was

right after I had just had an arthroscopic surgery done that made everything

much worse.

I finally went to Shands in Gainesville Florida, which is one of the best

dental schools in the country. I saw Dr. Dolwick there, who has written the

several teaching books on how to perform jaw surgeries. They still use his

books at that university. He told me to wait as long as possible before I

have surgery on my jaw. Basically no one can guarantee you that you will be

better off. The most you can hope for is remaining even as far as the pain

goes. I go to see him now usually once a year to have my jaw X-rayed and

to be reevaluated. Every time, his advice has been to wait. Right now jaw

surgery doesn't have a good outcome as a rule, and a lot of surgeons do the

surgery who shouldn't.

When my pain was at it's worse with my jaw I was nearly out of my mind with

pain. I ended up in pain management, which has saved my life. My pain in

my law has gotten better once I finally left the jaw alone and didn't try to

fix it anymore. I can eat steak and almost anything else. I mainly have to

watch how wide I open my mouth. Obviously I stay away from gum and chewy

candy. If I over do anything, I know about it almost within 30 minutes, so

I do baby my jaw now. If you do decide on surgery, just make sure you find

someone who does the surgery all the time, and ask to talk to some of his

patients so you can confirm the fact they are feeling better. Otherwise, a

teaching hospital is a great place to find out the latest info on jaw

repair.

I wish you the best and I hope you don't need the surgery. The recovery

time and physical therapy is very intense and I've been told really painful.

It's another reason I haven't rushed to have more surgery. The following is

a good site for jaw info if you need to read up on the whole TMJ problem.

Take care and I hope I haven't scared you. I just worry that people will go

through too much pain and not be any better off in the end. Sincerely,

Fran

http://www.tmj.org/index.asp The TMJ Association

Hello All,

I finally had an appointment with a new Rheumy on Wednesday. As I told you

I've had a bit of a struggle in finding a Rheumy who is aggressive enough

with my disease.

Here is basically what he told me. The main areas of pain I have is my

jaws, neck, right hip and right knee. My knee only hurts because the pain is

traveling down from my hip, there seems to not be a problem with my knee. He

told me the problem he has with putting me on big drugs like metho and

enbrel is that it really will not help the places I have pain in, and the

damage they would cause my liver and the side effects are too great. All the

places I have pain in are permanently damaged, I need surgery on my neck and

jaws and most definetely a hip replacement. I have NO cartilidge left in my

right hip joint. But he said that we are going to have a hard time finding a

surgeon who would do the surgery on me at such a young age. And I did give

him the argument about baby's and children having hip replacements and he

said he knows that but it will still be rough finding a doctor. He did take

more X-rays and he is going to compare them to the ones I had a year ago to

show

that I qualify for the surgery. And he is thinking of putting me on pain

killers since that is really the only thing other than surgery that will

help me with pain.

So it was a good visit but a bit disheartening because I know that I have

a long ways to go before I get any real help.

Thanks for listening,

[Editor's Note: , I'm glad you finally got in to see a rheumy you

believe is aggressive. It bothers me, however, that he won't put you on MTX

or Enbrel because while those medications cannot reverse the damage you

already have, they can help stem the progression of the disease so that you

don't get PA in places you don't already have it - and that's important! In

addition, while some people do develop liver problems on MTX, the majority

of people taking it do NOT. I don't know why he has assumed that you will

be one of the minority that would. So, for what it is worth, I think you

would be wise to seek out another rheumy and get a second opinion as well as

discuss the points I just made with the first rheumy. Just my opinion...

Kathy F.]

[Guest guest]

have tmj problems but no one has told me it was

> pa..How did the pa get diagnosed in your jaw?

>

Hi, I've had TMJ since I was in my early teens, and my

jaw locked up while at summer camp. I suffered a blow

to my head when I was 19, and an auto accident at 21

further exacerbated the injury. Finally, last year at

age 44, a panoramic x-ray during a major painful flare

indicated deterioration and arthritis (I was diagnosed

with PA in 2002).

In the past year I've endured cortisone shots,

physical therapy, and I spend every evening applying

ice and heat to my jaw (as well as my feet and back).

I can no longer chew on the right side, my jaw will

not close completely. I have to eat soft foods and

take small bites or I can't get through a meal. I also

have Sjogrens and both my parotid glands are swollen,

sore, and of very little use to me other than adding

to the pain in discomfort in my jaw area. My docs say

that surgery has to be a last resort. They just don't

have it perfected enough. It seems that those (like

Fran) who've had the surgery don't have a positive

outcome. The alternative of living with daily,

neverending pain isn't pleasant, but there doesn't

seem to be any other options.

My darling husband has found ways to help me through

this. Steak in a blender with A-1 sauce makes a tangy,

delicious stew. We've even blended salads with a bit

of ranch dressing. It's difficult to get proper

nutrition unless I steam vegetables and cut fruit into

baby-size bites. It's not a fun diet, but it gives me

a wonderful reason to eat more ice-cream

warm blessings,

jane

__________________________________________________

[Guest guest]

I had bilateral TMJ surgery on December 6, 2005. From the MRI's and x-rays,

they expected to have to clean out bone spurs, manufacture discs from the

cartilage in my ears and basically rebuild the joints. What they found when

they went in was that due to the PA, my coronoid muscles (the muscles that

connect just under your cheek bone to the spectral process (a spot on your lower

jaw bone)) had hardened to nearly bone-hardness, so they had to remove those

muscles on both sides. This eliminated my ability to move my jaw laterally.

But.... and yes, there is an upside to all this... Doing this eliminated nearly

all the pain. I only click and pop once every couple of weeks, as opposed to

clicking and crunching and popping so audibly your literally could hear my chew

anything. I am so happy I had the surgery! It was a great choice. I feel so

much better!

-L

PS- Relearning how to chew only takes a couple of weeks. But is well worth

it.

jane karsten <janekarsten@...> wrote:

have tmj problems but no one has told me it was

> pa..How did the pa get diagnosed in your jaw?

>

Hi, I've had TMJ since I was in my early teens, and my

jaw locked up while at summer camp. I suffered a blow

to my head when I was 19, and an auto accident at 21

further exacerbated the injury. Finally, last year at

age 44, a panoramic x-ray during a major painful flare

indicated deterioration and arthritis (I was diagnosed

with PA in 2002).

In the past year I've endured cortisone shots,

physical therapy, and I spend every evening applying

ice and heat to my jaw (as well as my feet and back).

I can no longer chew on the right side, my jaw will

not close completely. I have to eat soft foods and

take small bites or I can't get through a meal. I also

have Sjogrens and both my parotid glands are swollen,

sore, and of very little use to me other than adding

to the pain in discomfort in my jaw area. My docs say

that surgery has to be a last resort. They just don't

have it perfected enough. It seems that those (like

Fran) who've had the surgery don't have a positive

outcome. The alternative of living with daily,

neverending pain isn't pleasant, but there doesn't

seem to be any other options.

My darling husband has found ways to help me through

this. Steak in a blender with A-1 sauce makes a tangy,

delicious stew. We've even blended salads with a bit

of ranch dressing. It's difficult to get proper

nutrition unless I steam vegetables and cut fruit into

baby-size bites. It's not a fun diet, but it gives me

a wonderful reason to eat more ice-cream

warm blessings,

jane

[Guest guest]

Hi,

Last time I went to the dentist, he said I should be able to open my mouth

wider, but couldn't. We had to take breaks or my jaw muscles would go into

cramping, which really hurt. Now I think it explains what is wrong with it,

must be the PA, which I didn't know I had then, and I have always had

problems with those side muscles in the neck too. Very interesting,

Thanks,

Jeanette

Re: [ ] To on Jaw Surgery

I had bilateral TMJ surgery on December 6, 2005. From the MRI's and x-rays,

they expected to have to clean out bone spurs, manufacture discs from the

cartilage in my ears and basically rebuild the joints. What they found when

they went in was that due to the PA, my coronoid muscles (the muscles that

connect just under your cheek bone to the spectral process (a spot on your

lower jaw bone)) had hardened to nearly bone-hardness, so they had to remove

those muscles on both sides. This eliminated my ability to move my jaw

laterally. But.... and yes, there is an upside to all this... Doing this

eliminated nearly all the pain. I only click and pop once every couple of

weeks, as opposed to clicking and crunching and popping so audibly your

literally could hear my chew anything. I am so happy I had the surgery! It

was a great choice. I feel so much better!

-L

PS- Relearning how to chew only takes a couple of weeks. But is well

worth it.

[Guest guest]

Hi I have read a lot of posts on this group and deal with many of the

same issues. I have found an article that explains a lot of why we

have these problems.

It starts out with this:

Introduction

Food allergy is well recognized in clinical medicine as a cause of

acute attacks of asthma,

angioedema and urticaria, and as a contributing factor in some cases

of eczema and rhinitis.

These types of allergic reactions are considered to be mediated by

IgE antibodies, and usually

can be diagnosed by medical history and skin-prick or IgE-

radioallergosorbent (RAST) tests.

The full article is here:

http://www.thorne.com/pdf/journal/3-2/foodallergy.pdf

I know if I add corn, beef, tomato to my diet all hell breaks loose

in my skin and joints. Try illiminating the foods on the foods to

avoid list and see what happens. Our evolution process laughs at the

late 20th century food production.

Good luck

P.S. I look for a girl friend who looks for same.

[Editor's Note: Many people are allergic to particular types of foods and

eliminating those foods from their diets will certainly help their health

overall. However, there is NO point in eliminating foods to which an individual

is not allergic unless the food is generally unhealthy such as foods high in

" bad " fats. If you are allergic to tomatoes, don't eat them, but if you're not,

enjoy tomatoes in moderation. Kathy F.]

P.S.S My arthritis is in remission if I stick to diet mentioned.

>

> Hi,

> Last time I went to the dentist, he said I should be able to open

my mouth

> wider, but couldn't. We had to take breaks or my jaw muscles would

go into

> cramping, which really hurt. Now I think it explains what is wrong

with it,

> must be the PA, which I didn't know I had then, and I have always

had

> problems with those side muscles in the neck too. Very interesting,

> Thanks,

> Jeanette

> Re: [ ] To on Jaw Surgery

>

>

> I had bilateral TMJ surgery on December 6, 2005. From the MRI's

and x-rays,

> they expected to have to clean out bone spurs, manufacture discs

from the

> cartilage in my ears and basically rebuild the joints. What they

found when

> they went in was that due to the PA, my coronoid muscles (the

muscles that

> connect just under your cheek bone to the spectral process (a spot

on your

> lower jaw bone)) had hardened to nearly bone-hardness, so they had

to remove

> those muscles on both sides. This eliminated my ability to move my

jaw

> laterally. But.... and yes, there is an upside to all this...

Doing this

> eliminated nearly all the pain. I only click and pop once every

couple of

> weeks, as opposed to clicking and crunching and popping so audibly

your

> literally could hear my chew anything. I am so happy I had the

surgery! It

> was a great choice. I feel so much better!

> -L

>

> PS- Relearning how to chew only takes a couple of weeks. But is

well

> worth it.

>

[Guest guest]

Hi Mark:

Do you know if the allergist can test you for food allergies, and if so what

kinds of food can they test for. Is there an allergist on this board that

knows anything about that,

Thanks so much,

Jeanette

[Editor's Note: Yes, allergist can test for food allergies. Kathy F.]

[ ] Re: To on Jaw Surgery

> Hi I have read a lot of posts on this group and deal with many of the

> same issues. I have found an article that explains a lot of why we

> have these problems.

> It starts out with this:

>

> Introduction

> Food allergy is well recognized in clinical medicine as a cause of

> acute attacks of asthma,

> angioedema and urticaria, and as a contributing factor in some cases

> of eczema and rhinitis.

> These types of allergic reactions are considered to be mediated by

> IgE antibodies, and usually

> can be diagnosed by medical history and skin-prick or IgE-

> radioallergosorbent (RAST) tests.

>

> The full article is here:

>

> http://www.thorne.com/pdf/journal/3-2/foodallergy.pdf

>

> I know if I add corn, beef, tomato to my diet all hell breaks loose

> in my skin and joints. Try illiminating the foods on the foods to

> avoid list and see what happens. Our evolution process laughs at the

> late 20th century food production.

>

> Good luck

>

> P.S. I look for a girl friend who looks for same.

>

> [Editor's Note: Many people are allergic to particular types of foods and

> eliminating those foods from their diets will certainly help their health

> overall. However, there is NO point in eliminating foods to which an

> individual is not allergic unless the food is generally unhealthy such as

> foods high in " bad " fats. If you are allergic to tomatoes, don't eat

> them, but if you're not, enjoy tomatoes in moderation. Kathy F.]

>

[Guest guest]

Hi,

The reason I decided to write the food allergy post is because my jaw

joint became painful and stiff after I added corn, beef, and tomato

in my diet.

The reason for my diet relapse was because joined a friend at a

mexican resturant and was reminded of the great tastes and times I

use to have eating such foods. I ended up going to a store right

after and buying corn tortillas and tomatos. I am only human and

gave in to my desire for flavor. Health trumps any food. This last

relapse is the last one till I die. In the food allergy article note

the part that says we become addicted to foods we are allergic to. I

agree with this 100% And note the time required to begin to feel

better after eliminating the problem food.

[Guest guest]

Thanks,

Jeanette

Re: [ ] Re: To on Jaw Surgery

> Hi Mark:

> Do you know if the allergist can test you for food allergies, and if so

> what

> kinds of food can they test for. Is there an allergist on this board that

> knows anything about that,

> Thanks so much,

> Jeanette

>

> [Editor's Note: Yes, an allergist can test for food allergies. Kathy F.]

>

[Guest guest]

We had to take breaks or my jaw

> muscles would go into

> cramping, which really hurt.

Hi Jeanette,

My dental assistant uses a " block " when she cleans my

teeth. It's a wedge she puts on one side of my mouth

to hold it open while cleaning the other. Last time we

had to use the smallest possible wedge, my jaw doesn't

open far anymore. I was sore afterwards, but it made

it easier not having to try to hold my mouth open. I'm

fortunate that my jaw has never locked open, only

closed, so maybe this wouldn't work for you, but you

could ask.

warm blessings,

jane

__________________________________________________

[Guest guest]

Hi Jane,

yes, I will ask. I haven't gone back. I had to get a crown put in that time,

and I shy away from them now. If I get into another problem I will have to

go.

I will ask about that block too,

Thanks,

Jeanette

Re: [ ] To on Jaw Surgery

> We had to take breaks or my jaw

>> muscles would go into

>> cramping, which really hurt.

>

> Hi Jeanette,

>

> My dental assistant uses a " block " when she cleans my

> teeth. It's a wedge she puts on one side of my mouth

> to hold it open while cleaning the other. Last time we

> had to use the smallest possible wedge, my jaw doesn't

> open far anymore. I was sore afterwards, but it made

> it easier not having to try to hold my mouth open. I'm

> fortunate that my jaw has never locked open, only

> closed, so maybe this wouldn't work for you, but you

> could ask.

>

> warm blessings,

> jane

[Guest guest]

In a message dated 5/21/2006 4:19:05 A.M. Pacific Daylight Time,

yonder@... writes:

Do you know if the allergist can test you for food allergies, and if so what

kinds of food can they test for. Is there an allergist on this board that

knows anything about that

They can test you for just about anything...I did this to see if I was

allergic to wheat (long story, and the test was inconclusive)...but it did turn

up

an allergy to lemons, which I used to drink a lot of (was very fond of

homemade lemonade...). Cutting out lemons hasn't helped my PA, but there was

an

outside chance it would so it was worth it to me...

[Guest guest]

Thanks ..

Jeanette

Re: [ ] Re: To on Jaw Surgery

>

> In a message dated 5/21/2006 4:19:05 A.M. Pacific Daylight Time,

> yonder@... writes:

>

> Do you know if the allergist can test you for food allergies, and if so

> what

>

> kinds of food can they test for. Is there an allergist on this board that

> knows anything about that

>

>

> They can test you for just about anything...I did this to see if I was

> allergic to wheat (long story, and the test was inconclusive)...but it did

> turn up

> an allergy to lemons, which I used to drink a lot of (was very fond of

> homemade lemonade...). Cutting out lemons hasn't helped my PA, but there

> was an

> outside chance it would so it was worth it to me...

>

>