Anyone else diagnosed with acoustic neuroma, a benign brain tumor?

Hi I'm Linda , I was also shocked when the DRS told me I had a brain tumor after a routine exam due to hearing loss on right side. The ear Dr sent me to hospital for MRI and they confirmed it was a brain tumor they thought AN but told me I needed to go to University Hospital in Zurich ( I was living in Switzerland at the time) it was far too complex a problem and it was on brain stem and major nerves so it was urgent. So my nightmare began, tried to get an appointment with ENT responsible for evaluating my situation and taking to board to discuss best treatment. Had to wait 3 months for an appointment! I was shocked and scared so I got on a plane to USA and got appointment with John Hopkins, UPMC and a dr. In Los Angeles, I was frantic, John Hopkins told me surgery to dangerous with all nerves within tumor, thought radiation best option. UPMC thought partial debulk then radiation but warned me my quality of life would not be same. Los Angeles similar. I was even more depressed as I went back home to Switzerland and saw another hospital in Zurich, and his Dr told me I only had a few months and needed immediate surgery that it was a Glioma tumor. I was close to a nervous breakdown then my date came at Zurich University hospital, the board not just one Dr looked closely a all my medical data MRI, CT etc and decided very firmly that surgery not an option definitely to dangerous, radiation not recommended too close to brain stem and nerves they believed more damage to good tissue would be done.
One professor with confidence said he had my solution and he has had grea results in almost all cases like mine. He wanted to do a emolization of the blood feeders to the tumor to try to shrink it and stabilize the growth. Normally Brain surgeons do this before major brain surgery to inhibited bleeding. In meantime they decided I had a non cancerous Meningioma tumor. This procedure was discovered by this Professor who worked with a Dr Fisch who was a world renowned brain surgeon at the University, he found that his patients who came from all over world came for the pre operative procedure and had such good results they cancelled the surgery. These patients became stabile and every year just had MRI to control the growth. After about 20 years of doing this with great success they decided it was a very good solution for tumors like mine where surgery was not a good option. So I had my embolization October 31st, 2012, he closed off all the blood going into tumor and it shrunk about 30% and with every nearly MRI it has been stabil with exception I loss my hearing on right side but this was due to nerves were already damaged before procedure, he told me this type of tumor is slow growing and if it finds new blood feeders and starts to grow he can do the operation again. Told me this was the best solution for me all other options would possibly ruin my quality of life. Now I come to my new problem.
I moved from Switzerland to Ft. Lauderdale 2 years ago when my husband retired, this is now our permanent home. My Dr in Switzerland cannot recommend any Dr in USA because he feels they are all to aggressive with surgery and radiation and can not recommend anyone with his experience in embolization as a stand alone treatment. The Dr must be very gifted to do this procedure and he is but now he is 64 near retirement plus I have had to fly to Zurich to get my MRI and consultation, I desperately need to find a Dr to take care of me here in USA, with Global hospitalization it's just too complicated and expensive plus I'm scared if something happens and I cannot get to switzerland not having a Dr here would be disastrous. I have not been able to find a Dr with this type of experience I don't know how to proceed. Please can anyone help me or give me advise. The health care system has is so complicated and after 35 years living in Switzerland I do not have many resources and no family to help me. I would appreciate any recommendations or help. Thank you

Acoustic neuroma found during an MRI which discovered Hydrocephalis. Brain surgeon implanted a shunt, which took some getting used to. Had a problem with dizziness, lack of balance--but therapy helped. Doc decided not to do anything to the neuroma--just observe, so I still have it, and do feel sharp pain in that area fairly often.
The good part is that my balance is better, am able to exercise, speak logically, and not use a cane. Just have to take life a day at a time and be thankful that we can walk and talk and move.

Hi Tracey,
I am 65 years old and was diagnosed with Acoustic Neuroma on my left side 16 years ago. The only symptom I had was severe dizziness. A CT scan diagnosed me with the Acoustic Neuroma. I elected to have surgery since my doctor told me my tumor would only get bigger. My tumor was wrapped around my hearing, facial an balance nerve. Two days after my surgery I lost the hearing in my left ear and had severe left sided facial drooping and balance problems. I could not close my left eye and had to wear a eye patch. My facial drooping has improved with reconstructive plastic surgery. I can close my left eye. I have no hearing in my left ear and have a constant ringing which I have gotten used to. I still have balance issues. My Acoustic Neuroma has given me challenges to work though, but I don't let it keep me from leading a happy and productive life.
Good Luck you...

About a year ago I was diagnosed with a small acoustic neuroma. (I am now 69. My doctor said the median age is 71, and they do not like to operate on older people.) My doctor suggested it best to wait and watch it since I do not notice symptoms yet, except for some gradual hearing loss in my right ear and ringing in my ears. Living one day at a time and trying to enjoy each day has been my goal. When necessary, the doctor suggested radiation therapy, which can cause it to become cancer in 2 % of cases. I am not at all enthused about any kind of surgery, especially on my head. I am really hoping for a new kind of treatment, such as immuno-type therapy where you take a pill, and it goes to the tumor and shrinks it or makes it disappear. Some doctors are now using it for cancer tumor treatment with some amazing results.

I just wanted people with acoustic neuroma to know you are not alone, and I know it is like sitting on a time bomb and is quite nerve racking. I try to keep busy and not dwell on it. We can try to find some talented doctors, pray for a cure, and hope for the best. Good luck to you all!

I also have two small thyroid nodules that the doctor is watching; the larger one checked was benign. Thank God! Last month I had an attack of acute pancreatitis and was in the hospital four days, three on an IV. They could not find out exactly what caused the problem but thought a gall stone traveled through my pancreas. Now I have tendonitis in my right foot from going up and down 14 steps too much. (My daughter recently had a breech C-Section and could not climb up and down her stairs for several weeks.) For over the past year, it seems I just get one problem paid for and get another. Hopefully, it will not get any worse this year. I am still feeling pretty good, though - even with all of my medical problems.