Damaged Salivary Glands After I-131 Treatment

I was diagnosed with thyroid cancer in June-2005. I had my whole thyroid removed then had radioactive iodine treatment (186 millicuries). About three months later I developed problems with my salivary glands, mostly the parotid and submandular glands. They were very swollen and painful especially when eating or drinking. I was told this is rare but can happen. I have been working with an ENT and we've tried bilateral sialoendoscopy and antibiotics three times but have not had any relief. I am also taking Salagen and Numoisyn losenges witch don't seem to be helping. I am afraid I am running out of options for relief. I am becoming very discouraged. Could this be something I will have to live with for the rest of my life? It has already been about one year of pain. Are there any other options of treatment for this problem? Help!

I had the same problem after my radioactive iodine treatment, they tried to tell me that there was no damage done but my face would swell up on one side when i ate certain foods or drank certain drinks. Then when I went for my yearly body scan they noticed that there was some significant damage done to my salivary glands..it still bothers me all the time and my face swells up as well. I didnt know there was actually treatment or things to be done about this situation. My doctor just apoligized to me and acted like it was no big deal...

Have you looked into acupuncture? SPOHNC states that 50% of people treated with acupuncture have found relief from it. Also, I have been treated with it and found a small improvement. I sleep a bit better and it does help. Also, have you tried the Numoisyn liquid form. I was looking into that to help also.

thank you for your response -- How long have you had this problem? I have had it for about one year- four of the major six salivary glands give me problems - they are very painful and swell often along with very dry mouth. The procedure I had is fairly new they told me -- it is called a sailoendoscopy - they clean out the glands by going through the mouth with a very small tool. You may want to check into it- I have now been told the two parotid salivary glands are completely ruined and are going to dry up and die?? I have never heard of this but will find out more information next week when I see my docotor again.

I have just finished my second sialanoscopy at UC San Francisco Mt Zion Hospital.  It is a new procedure being done by Dr. David Eiselle.  He is working with patients who are having salivary swelling post thyroidectomy.  He uses a laser with saline solution to clean our the gland.  They blow it up really big and clean deep into the gland.  One lady is totally free of the swelling and pain after two treatments.  Mine has been going on for 3 years now, and it looks like the parotid on the left is totally damaged and beyond repair.  We will see, it has only been a week.  What I wanted to share is that this dr. tells me that he is having great success with patients who have just had the first acute attack of this after a recent TT surgery.  It is not unusual to have a flare up 3 months to several years post surgery.  I wanted to let anyone know that if they are just suffering with this a year or so after the original surgery and haven't had a lot of infections, this procedure might be the answer for them.  It is only being done in San Francisco and the Univ. of Pittsburgh.  If you want some more info, email me and we will chat.

 

On 2/2/2007 Holi44 wrote:

I have just finished my second sialanoscopy at UC San Francisco Mt Zion Hospital.  It is a new procedure being done by Dr. David Eiselle.  He is working with patients who are having salivary swelling post thyroidectomy.  He uses a laser with saline solution to clean our the gland.  They blow it up really big and clean deep into the gland.  One lady is totally free of the swelling and pain after two treatments.  Mine has been going on for 3 years now, and it looks like the parotid on the left is totally damaged and beyond repair.  We will see, it has only been a week.  What I wanted to share is that this dr. tells me that he is having great success with patients who have just had the first acute attack of this after a recent TT surgery.  It is not unusual to have a flare up 3 months to several years post surgery.  I wanted to let anyone know that if they are just suffering with this a year or so after the original surgery and haven't had a lot of infections, this procedure might be the answer for them.  It is only being done in San Francisco and the Univ. of Pittsburgh.  If you want some more info, email me and we will chat.

I would like more information - experiencing salivary gland issues after TT surgery.  How do i contact Dr. Eiselle?

 

I am so glad I am not the only one that has experienced this problem.  I had my thyroid removed Oct 06, did RAI Jan 07 and as of beginning of April 07 I have been having problems with my salivary glands, first right side and today my left.  My doctors couldn't say that is was a side effect to the RAI and now after reading your comments, I am convinced.  Now, maybe, we can find a way to treat it.  They have been telling me I have a stone for the last few weeks.  What I am wondering now is how invasive is this sailoendoscopy treatment?  I am so tired of being poked and proded.  I am exhausted of doctor after doctor.  I don't want to have to keep worrying about what is going to go wrong next.

I found this link that was also informative and I printed it to take to my doctor http://www.thyca.org/salivary.htm

Hi-Any info you could share would be helpful. My Mom had the same problem with her salivary glands and I'm afraid it will be something she'll have to live with. I had my thyroid removed in 1991 and had no  problems after RAI so I was shocked when this came up. Any info you can pass on will be helpful.

Thank you~

 

HI, I read you message a while back and have since set up an appointment for the procedure with Dr Eisele. I leave on Monday for SF and would love to hear from you about it. I think I caught it early so I'm hoping to have success. Any information you have to offer is appreciated! Thank you! Marlyn

Hello, I have had salivary gland damage to 4 out of 6 of my salivary glands after my RAI treatment in 2005. I had 4 sialoendoscopy's and they helped a little for 1.5 years. Now I am having more swelling and pain in my submandibular glands. I was also told my parotid glands have dried up and died. Now I was told they can inject Botox into the glands to reduce the pain and inflammation but very dry mouth is a side effect and possible weakening of the neck muscles which can make swallowing difficult.

Has anyone ever heard of this type of Botox treatment and if so, is it successful and are there any other side effects.

Thanks