Re: Pain in Jaw

March 29, 2002

Hi, My name is and I am experiencing the exact same thing right now even

with the doctor situation, however I did get in to see my new endo. and he said

it is the parotid gland which is one of your major salivary glands. He said the

RAI treatment could have settled in that area causing it to swell and hurt and

make it hard to open your mouth. I had my RAI done 3 weeks ago and my jaw hurt

for 3 days during that but this flare up is worse, he said it could be permanet

damage to the gland so maybe thats why yours has flared up so long after the

RAI I'm not sure but I would get in to see someone because sometimes they need

to give you an antbotic but he didnt give me, any he said it should go away in

no more than 10 days if not I have to call him. It's been 7 days now its been

hurting am sometimes I cant get my mouth open more than 3 inches, not much fun

and what food I can get in my mouth it hurts to chew it but it seems to be

getting better. So hang in there but do try to get in to see someone. RENEE

<tt>

Hi!

I am in need of some help again. I am so mad right now at my Doctor. I have

been having pain in my jaw and right behind my ear for about three weeks. Some

days are worse than others. At times when I go to swallow I get a very salty

taste in my mouth. I finally called my Doctor yesterday because I could hardly

open my mouth and it really hurt to chew. She was to call me back and never

did. I called again this morning and the office is closed. So they gave a

number to call the on call Dr. I did that and told him what the problem was

and he gave me the usual answer. It has nothing to do with the thyroid

cancer. I told him that I had RAI and maybe it was something to do with the

saliva glands. He told me to call my primary Dr and go to the emergency room.

He said that my Dr. was out of town and he knows nothing about my case and

can't do anything for me. So I figured I would come to someone that !

cared and new what I was talking about for some help. Is there anything to do

or take that helps with the pain. Last night I could not even sleep or either

side because it hurt to much to lay on it. If anyone has any suggestions I

would greatly appreciate them. I had my RAI treatment done in Oct. of 2001. I

did not have any problems with this until now. Thanks in advance.

TT Aug 2001

RAI 150 MCI Oct. 2001

PAP Cancer

sypolt@...

March 29, 2002

, It sounds like classic salivary gland pain. The few of us who have

this know just how awful it can be. I am convinced as well my docs that the

parotids are permanently disfigured due to my doses of high radiation (341

and 400 millicuries). I did not experience my first bought with the pain

until 6 months after the 1st RAI. That is usually how long it takes for the

scar tissue to form. At times it really flares up to the point where I am in

tears and cannot even function. Other times it ceases. All I can suggest is

motrin or aleve for pain and to massage the whole area starting up under the

ear and down the jaw line. (IT REALLY HURTS TO PUSH ON IT SO I AM

FOREWARNING YOU!) You may get a pungent taste in your mouth as well. It

could be a sign of infection. I was put on antibiotics for 2 weeks by my ENT

and it seemed to help the gross taste a little bit. If you do not have

salivary stones (which an ENT can check for) you will probably have to learn

to just live with the pain like I have. They pretty much told me my only

other option is to have reconstructive surgery on the parotids themselves.

After just having a bilateral neck dissection a few months ago, surgery is

not something I am even willing to discuss right now! Hope you feel better.

from CT

March 29, 2002

,

I feel for you!! Unfortunately MOST docs know nothing of this--even the endos.

I guess a lot of people do get the symptoms and don't report it, so they don't

know. I suffered with mine for a year before a got a doctor to acknowledge it.

When I went back in for my follow up scan one year after my big dose, they

noticed that I had a " pool " of saliva in the left parotid gland (it was well lit

up). I freaked and they said " oh, it's just pooled saliva. " I then told the

nuclear physician there that I often get pain there and dry mouth and that I

have to massage it to get the saliva out. He said, " oh, sorry, we must have

fried your saliva glands last time. " Not a great answer, but at least some

RECOGNITION. Do you have any relationship with the nuclear physician who

administers treatment? Maybe he/she could at least make you feel better.

Bottom line, there really is NOTHING you can do. The salty taste is when the

saliva actually does come out it is very bitter. This is normal and when you

get the bad taste that is good because it means that some is coming out. Keep

massaging it, eat things like grapes (they are great for stimulating those

glands), and take some ibuprofen. This is really tough to deal with and I

remember being very miserable. But I have no problems anymore. My glands acted

up roughly about 4-5 months AFTER my treatment.

In a message dated Fri, 29 Mar 2002 11:46:39 AM Eastern Standard Time, "

Sypolt " writes:

> Hi!

>

> I am in need of some help again. I am so mad right now at my Doctor. I have

been having pain in my jaw and right behind my ear for about three weeks. Some

days are worse than others. At times when I go to swallow I get a very salty

taste in my mouth. I finally called my Doctor yesterday because I could hardly

open my mouth and it really hurt to chew. She was to call me back and never

did. I called again this morning and the office is closed. So they gave a

number to call the on call Dr. I did that and told him what the problem was and

he gave me the usual answer. It has nothing to do with the thyroid cancer. I

told him that I had RAI and maybe it was something to do with the saliva glands.

He told me to call my primary Dr and go to the emergency room. He said that my

Dr. was out of town and he knows nothing about my case and can't do anything for

me. So I figured I would come to someone that cared and new what I was talking

about for some help. Is there anything to do or take that helps with the pain.

Last night I could not even sleep or either side because it hurt to much to lay

on it. If anyone has any suggestions I would greatly appreciate them. I had my

RAI treatment done in Oct. of 2001. I did not have any problems with this until

now. Thanks in advance.

>

> TT Aug 2001

> RAI 150 MCI Oct. 2001

> PAP Cancer

>

> sypolt@...

>

March 29, 2002

,

I have the same problem with both sides of my " face " under my jaw and ears.

My doctor told me to drink a lot of water during the day and lay off the

coffee. I also notice when I eat certain (usually salty) foods I can feel it

start to swell and it really hurts. Hope this helps

Toni

March 29, 2002

Hi again ! Salivary stones are actual little stones that are caused

by a blocked salivary duct. I think it has to do with the pent up backed

saliva. Doesn't this get more appetizing by the second? HA HA . My ENT

felt the inside of my cheek and kind of prodded around. I guess they can

usually be felt by hand. Hopefully you get a good Doc that will pursue this,

but for the most part they all brush it off and tell you to drink plenty of

fluids blah, blah, blah!! Let them feel the pain for 5 minutes and they

would have better advice than drink fluids! Good luck and keep me posted.

from CT

March 29, 2002

,

Thanks! I new if I came to the group that they would have more knowledge than

my Dr. At least I know now that I am not going crazy and this is really

happening. Sometimes you start to wonder if you are losing it or not. I will

try the massaging and see what happens. I do not have any contact with the

nuclear physician. The only time I saw him was when he had the pills for me in

that nice little container. I never saw him again after that.

I am still going to try and contact my Dr on Monday just to see what she has to

say. But thanks again for taking the time to write.

Re: Pain in Jaw

,

I feel for you!! Unfortunately MOST docs know nothing of this--even the

endos. I guess a lot of people do get the symptoms and don't report it, so they

don't know. I suffered with mine for a year before a got a doctor to

acknowledge it. When I went back in for my follow up scan one year after my big

dose, they noticed that I had a " pool " of saliva in the left parotid gland (it

was well lit up). I freaked and they said " oh, it's just pooled saliva. " I

then told the nuclear physician there that I often get pain there and dry mouth

and that I have to massage it to get the saliva out. He said, " oh, sorry, we

must have fried your saliva glands last time. " Not a great answer, but at least

some RECOGNITION. Do you have any relationship with the nuclear physician who

administers treatment? Maybe he/she could at least make you feel better.

Bottom line, there really is NOTHING you can do. & n! bsp; The salty taste is when

the saliva actually does come out it is very bitter. This is normal and when

you get the bad taste that is good because it means that some is coming out.

Keep massaging it, eat things like grapes (they are great for stimulating those

glands), and take some ibuprofen. This is really tough to deal with and I

remember being very miserable. But I have no problems anymore. My glands acted

up roughly about 4-5 months AFTER my treatment.

In a message dated Fri, 29 Mar 2002 11:46:39 AM Eastern Standard Time,

" Sypolt " writes:

> Hi!

>

> I am in need of some help again. I am so mad right now at my Doctor. I

have been having pain in my jaw and right behind my ear for about three weeks.

Some days are worse than others. At times when I go to swallow I get a very

salty taste in my mouth. I finally called my Doctor yesterday because I could

hardly open my mouth and it really hurt to chew. She was to call me back and

never did. I called again this morning and the office is closed. So they gave

a number to call the on call Dr. I did that and told him what the problem was

and he gave me the usual answer. It has nothing to do with the thyroid cancer.

I told him that I had RAI and maybe it was something to do with the saliva

glands. He told me to call my primary Dr and go to the emergency room. He said

that my Dr. was out of town and he knows nothing about my case and can't do

anything for me. So I figured I would come to someone ! that cared and new what

I was talking about for some help. Is there anything to do or take that helps

with the pain. Last night I could not even sleep or either side because it hurt

to much to lay on it. If anyone has any suggestions I would greatly appreciate

them. I had my RAI treatment done in Oct. of 2001. I did not have any problems

with this until now. Thanks in advance.

>

> TT Aug 2001

> RAI 150 MCI Oct. 2001

> PAP Cancer

>

> sypolt@...

>

March 29, 2002

,

Thanks for the advice. I told my husband about massaging it and he said that he

would be happy to do it for me. He is a Occupational Therapist and just loves

to see other people in pain. I told him you said it will hurt and he told me

that it won't hurt him a bit. Nice guy. What are salivary stones? I never

heard of them. I am still going to try and contact my Dr. on Monday and see

what I should do and what she will say. Thanks again for the advice.