tongue problems

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

Hi, Thank you for the information on your journey. I understand and wondered about taking a biopsy and another
one being different. What would you have done differently. SAID NO to radiation? Said NO to removing the 2nd gland
removed. I would think twice about targeted radiation.

Hello Elizabeth.
Before answering your questions of today, I started to tell you about dental issues in my 2nd post to you yesterday.
I got as far as telling you about the limited mouth opening and forgot to finished.
The dentist I had back in the 70's actually took an interest in helping patient's like me with limited mouth openings, TMJ problems.
He has since passed but he started a dental firm and as years went on he had several associates.
I say this as I have been seeing one of the associates since he passed.
But the original dentist worked with dental tool companies to help design dental instruments that could be used on people with limited mouth opening issues.
I have managed to keep my own teeth all these years as I do regular checkup.
Since 2012, I have been on 3 to 4 month cleanings and check ups.
It is VERY important to keep good dental health when going through radiation therapy for head and neck cancer patients
My radiation oncologists wanted me to have all my teeth removed in 2012 before starting the therapy, as she thought the 2nd round of radiation in the same area was going to cause a lot of dental problems.
My dentist, after knowing me all these years, did not agree with this decision and told her why.
She was satisfied with his reasoning but that is also why I am on this 3 to 4 month schedule.
Now there is a problem developing in the left jaw bone, but an oral surgeon is currently monitoring every 3 to 4 months.
An it has just flared up again.and I may have to go through hyper-baric oxygen treatments again.
That decision well made made April 11.
I am on a 5 week stay in Michigan due to surgery I just had last week. I can explain that in another post to you as it is also related to all this radiation.
Like you, I have so many things going on simultaneously in the same area.

Now to answer your question about radiation and if I would have done things differently with the surgery and radiation..
I presume you mean in 2012 journey.
In 1973 I was so young and didn't know any better and just did what the doctors told me to.
It was a different time and things were done much differently.
And it was like you were alone in this world an no one wanted to be around you.

One thing I would have probably done differently was to get a different ENT doctor.
But by the time I figured that out it was to late.
There are many reason for that and that's another story if you want to hear.
But it's very much like you changing doctors now.
Things did work out good in the end as far as the surgery he did to remove the 2nd parotid.
I say this as the tumor was growing in to the facial nerve and it was removed before it grew to much more into the nerve.
That would have even made the surgery more complicated and more of the facial nerve would have been taken causing more problems. The nerve grafts have small percentage of working .

Radiation today is so much different from back in the 70's.
It was a low energy radiation and it did more damage to other organs surrounding the intended target.
The whole area got the same amount of radiation and that included the out shut from the pinpoint of the target.
If that makes sense to you.
So knowing this my oncologist of 2012 was very concerned about the issues of doing radiation twice in the same area.
So radiation today using the machine is very different today. It is a high energy and much more controlled and targeted.

I got as much information as I could, and then I had to make a decision as to how to move forward.
She is such a super person and very thorough and detailed with information.

But I had to sit down and go through all the pros and cons of moving forward and going through this again and if I would survive or would it be better not to go through radiation again.
It was new to everyone having a patient going through this again and there were a lot of unknowns.

My decision was to go through with the radiation again.

One can always sit down after going through anything and nit pick the "what ifs".
I try not to do this as I made the decision and I have to live with it now and move forward.
I'm 5 years out now on the this 3rd journey.
At the beginning I told the radiation oncologist if she gave me another forty years that would be great, and by then no body would care anyway.

I am not sure if I answered your question.

GOD BLESS.

Tim

HEY Everyone with lichen planus and any oral issue, I FOUND THE NO. 1 Doc in the country. Saw him yesterday
he KNOWS HIS STUFF. Dr. James Sciubba of Timonium MD. 15 minute ride out of Baltimore. Went by train
stayed at nice hotel with shuttle service.
Dr. James Sciubba will get you the help you need put it together, he is International Known.
I was sick of the whole mess and dying slowly at least I felt so. FINALLY a doc. who gets to the root of the
problem. FINALLY ! ! ! ! ! ! ! Google him yourself UNBELIEVABLE

@elizabethbryant So glad to hear that you found someone! That's wonderful! Teresa

Thank you so much. My tongue is feeling better and my overall look at life has changed more for the positive. I live in Florida so I don't think I will be going to Baltimore, but thanks so much for the info
GOD BLESS Patti

My dentist gave me an ABSOLUTE CURE FOR DRY MOUTH....using a cotton swab or just swish mother vinegar or flavored vinegar--do this every 10 minutes or so the first time until you find that the salvia is on automatic. The parotid gland gets blocked because you do have dry mouth --the vinegar stimulates salvia...SPIT it out. Keep stimulating it until the gland gets relief--depending on meds you take it will come back from time to time. BE sure to rinse your mouth well when you stop. I did the 10 minute routine for 1 hour...yes I was desperate. I carried sour sugarless candies---the more sour the better for salvia stimulation.

@justreno123 Dry mouth is a big problem right now so you say just vineger? do you dilute it with water or add sugar to it? I can tolerate it with honey in it ,would this do the same do you think? One thing about vinegar I found out it acts like a constrictor in the nose. I'm prone to nosebleeds as I have a broken cartilage and use vinegar on a cotton swab in nose and it cauterizes the blood vessel ,stops the bleeding

@justreno123 - I wanted to add my welcome to @lioness'. Glad you are finding some relief now. Do you know the origin of your dry mouth? Was it due to medication, another illness or something else, to your knowledge?