They really didn't do anything for my parotid glands. My mouth does get very dry as they don't [produce saliva. They basically told me to buy sour sugarless gum or hard candy and rinse my mouth with ACT for dry mouth. It helps a little. A lot of it is some of my meds. It's a side effect to a few. Let me know what your doctor says. Very interested! Good luck. Praying for answers for you....

I have a parotid gland tumor I wonder if this is causing the pooling of salvia in my mouth eating up tissue.

My parotid glands are blocked so I can't make saliva. I have to use ACT for try mouth.

I have a parotid gland tumor that needs to be removed. It looks like a tumor in the hub of a wheel of nerves that led to the
face and is located under the back of the jaw bone. To remove it requires a cut from the ear down to almost the center
of the neck to enable the surgeon to remove it. Some type of nerve sensor has to keep check on the nerves that extend
into the face to ensure none are damaged. This is my understanding. I don't like to think about it so much as I am
dealing with oral lichen planus and severe dysplasia under the tongue.
Interesting, if you are using ACT for dry mouth perhaps this is the reason with the reduction of salvia I am starting to
deal with is causing my teeth to ache.

Is that what cause your tongue problems? Bet you go through a lot of ACT! Wishing you much progress and please keep in touch so I know how you are doing
Patti

My thoughts and prayers are with you sweet lady. Keep in touch
Patti

Hello Liz1

I was just browsing throught the ENT group and found your post.

I have a few questions to ask you about the procedure description.
First of all you have so many things going on simultaneously all in one area.
How large is this tumor?
Have they done any biopsy tests, such as an FNA , which is Fine Needle Aspiration, to determine if this may be cancer?
The FNA is not the best test as it can be a hit and miss situation, but it start without any invasion.
Have any PET/CT Scans been done to detect anything that could be cancer?

The reason I ask these questions is that I have had 2 parotidectomies and no longer have parotid glands.
First surgery was in 1973 and the second one was in 2012.
You are absolutely correct about all the nerves coming into that area.
The doctors always refer to it as the 7th nerve when ordering all the different scans.
And during surgery they use the nerve sensor instruments on those nerves to prevent damage when cutting to remove the tumor.
The reason for that is if the tumor has grown into the nerves, then they have to take part of that nerve out without doing to much damage. The monitors are telling them when to stop.
My surgery in 2012 required taking some of the facial nerve.
However, before they remove any of the nerve, a biopsy will be taken to determine if they should proceed to do that.
If the biopsy is negative then they may just leave the nerve alone and leave that part of the tumor there.
But if it is positive, then they will take some of the nerve.
In my case they had to take some of the nerve because the margins were not cleared.
Then they had to do a nerve graft to save the facial movements.
So those monitoring nerve instruments are very important part of the surgery.

My surgeries have never been in need to cut all the way down to the center of neck and it's the first time I've heard of this.

I have had 3 journeys with cancer since 1973, of which 2 of them have been in the parotid glands, and the other was Basal Cell on my nose. My nose need not require any further treatment after the second surgery to clear the margins.
But the parotid gland surgeries both required follow up radiation therapy.
I know have no saliva glands left in my mouth as the radiation therapy destroyed those and of course the parotid are gone.
People talk about dry mouth problems, but they never know what its like with my condition.
I also have so many other issues going simultaneously in this area.
I will stop here so that you can answer my questions.
And if you or anyone else has questions please ask.

I have a couple questions I like post myself later.

Hi, I will attempt to answer some of your questions. I had a partial glosectomy, sp removal of the lower part of my tongue
as errosive lichen planus turned into cancer from medical negligence. I now have severe dysplasia in that area and lichen
planus in part of the area.

I will see a new doctor on Wednesday that specializes in these areas also a parotid gland tumor on the right side.
The tumor is located in the right parotid gland and in August 2016 I had a needle guided biopsy done at John Hopkins
and it was said not to be cancer. I realize they are only taking a bit from an area. The next step will be by the
advice of the new doctor I will see on Wednesday. It will be a lengthy train ride and hotel stay up north.

I did not have radiation after my tongue surgery because it was unusual the pain never left after surgery. Long story
but I believe the doctors and meds do their part and God does the healing.

I will post my findings, I understand about the facial nerve. It is my understanding if all of the tumor is not removed it
sort of bubbles up and grows. It is my understanding from John Hopkins and perhaps Internet that the surgeon would
go back into the scar (from ear to adams apple) where my lymph nodes were removed on the right side and remove the
parotid tumor.
I am sorry about your issues. It sounds like the radiation and removal of the parotid glands took all your saliva which takes
away teeth health and causes other issues. Where was all this medical done if you don't mind me asking.

Hello Elizabeth.
It was nice of you to share your full story to me.
I was so concerned after sending the post I sent you that I was going to have to suggest to you that your doctor had not done something right.
As those other two conditions you mentioned along with the parotid gland tumor were all major indicators that you had cancer and I didn't know how to tell.
But you have had one heck of a journey already and with the wrong doctor.
It's good you had the FNA test done back in August.
But like I said that is a hit and miss situation as part of the tumor could be cancerous and the other parts noncancerous.
I say this because at the start of my 3rd journey they did a FNA test and it was positive, so they immediately did another one and it was negative.
So with the results from the first being positive they had no choice but to do further investigation.
After a year of watching and testing it started growing which led to doing the next parotidectomy in 2012.

May GOD be with you and with the new doctor in helping you.
It sounds like you have the best doctor.
I think you have a great attitude already with what you said in your post.
I wouldn't be here today id it was for HIS help.
I have surpassed a lot of records since 1973 when my first journey with cancer started and now with my 3rd journey I am still breaking records.
My Radiation Oncologist has never seen or heard of anyone survive what I have been through and still have such a positive attitude..
I have so many side effects from both the radiation therapy sessions, 1973 and 2012.
My latest ones are now where in 2014 where for no reasons at all my tongue and throat voluntary muscles no longer are responding and I can not speak or eat orally anymore. I can not even swallow water.
I have to use water to rinse my mouth out to keep my mouth moist continuously all day.
I am now on strictly feeding tube for everything.
I have had every test available from neurological to all kinds of special MRI and CT scans that I never knew existed.
Nobody can explain it.
They all say it 's from the radiation from 1973 and not 2012.
The reason being it was soon after the 2012 session.
So the 2012 session must have woke up the destruction process of 1973 sessions.
I had hyper-baric oxygen treatments in 1981 which stop that process as it was destroying the jaw bone on the right side., which is the first parotid gland that I lost.
My list of side effects from both is so long, but it does include oropharyngeal dysphagia..

I could go on about all I have been through and if your interested I could give you more information.
But for now I will stop.
And please keep me posted in how your new doctor and what he plans to do .
It sounds like you are being vary proactive and in the proper way on your journey.
May GOD be with you and my prayers for you.
Tim

Hello Elizabeth.
I forgot to answer your questions about where all my medical issues are being treated.
It is all being completed from Providence Hospital in Michigan, but I have also been using VA Hospital in Ann Arbor, Michigan as well,
The VA there is next to the U of M Hospital which has a lot of good doctors.
VA uses these doctors and also trains new medical doctors.
It was actually the VA doctor in training that did the first FNA test in December of 2010 and found the right spot in the tumor which indicated the positive test.
She did the second one and it was negative, which lead to the next steps with further testing.
I only use VA for certain things.
But problem is that I moved from Michigan to Nevada in 2005 to help my aging parents.
But I still return to Michigan for all my medical.
I was only in town for a short stay when this was discovered.
On my next trip in March I saw my outside ENT from Providence and told him about the results so he wanted the test to completed again.
He reviewed the results from both test and decided to wait and see approach.as the tumor was small.
But then on the next test 6 months later and with it growing he decided that surgery was needed.
The reason the surgery wasn't done immediately was due to scheduling conflicts in our schedules and with the holidays coming up.
I figured if we had waited all this time it could wait another couple of months.
So that is why it wasn't until January 2012.
As far as the oral issues with the teeth that is another complicated problem.
Due to the destruction of the radiation in 1973 the jaw muscles got burned and tighten up.
The jaw bone was also deteriorating at same time and that is the reason for the hyper-baric oxygen treatments, which worked.
That left me with a TMJ problem of very limited opening of about 13 mm, and yes you are reading that correctly.
Back then there wasn't much knowledge of how to resolve that issue and you had to use this stack of tongue depressors to try to exercise the jaw muscles to help the situation. Through the years there have been many of instruments developed.
But I am currently using the best one on the market and it 's called Dynasplint Trismus system.
It's great and I highly recommend it over the Thera-Bite System for many reasons.

Where were you getting your care and where are you now going to get care for your situation?

GOD BLESS
Tim