I was diagnosed with an Acoustic Neuroma in my right ear a little over 4 years ago and I have been in the “watch and wait” status since that time. I have suffered hearing loss and tinnitus since leaving military service in 1969 and the Veteran’s Administration has recognized it as a “Service Connected Disability”. My hearing loss is in both ears but the right ear is much worse and that ear also is where the tinnitus is the most noticeable. I have also noticed some balance issues over the past year or more when I stand up, turn around quickly or look up (as when changing a light bulb).
The AN was actually found by accident when the MRI was performed for another health issue. The tumor is in my right ear and I don’t recall for certain but I think I was told that it was only about 4 mm (I assume that was length) when it was first discovered.
I live in the Birmingham AL area and had been going to the VA for my MRI follow-ups. In August 2017, the VA referred me to a doctor of Otolaryngology, Dr. McGrew, at the UAB Kirklan Clinic for further follow-ups and consultation. At that time, the tumor was reported to have grown to 7x4 mm. My latest MRI summary report at the end of October 2018 shows the tumor as now having grown to 4x8.5 mm as compared to the previous report (Feb. 2018) of 3x7 mm. So, there seems to be some inconsistency as to the reported growth. At any rate, it appears to be growing.
Dr. McGrew is now suggesting that I consider undergoing a procedure on the tumor while it is small enough to be less likely to cause complications. So, that is where I am now and I am trying to research this thing. Some of my concerns are:
- How does the UAB facility stack up in comparison with other facilities? Obviously, I would prefer to have the procedure done locally to permit follow up visits without getting on an airplane but I would go where ever I have to in order for the best chance of success. UAB did not come up on the ANA search for providers …..in fact, there were no providers listed in Alabama. I’m thinking that they probably just did not want to pay for the advertisement.
- Is there anyone out there who has had recent experience with UAB and Dr. McGrew that they would like to share? I read the post from “fizzysuz” from November 2012 and it gave me some cause for concern.
- Which would be preferable for the tumor removal, surgery or radiation? With my tumor still as small as it is, are both options good choices? I am 71 years old and in reasonably good health. From what I have read, it sounds as though radiation is a no-brainer (no pun intended) at my age.
- The claim that radiation is quick with no recuperation or convalescence time is certainly a big plus. I don’t like the idea of leaving a dead tumor in there and I’m concerned about the development of a cancer if radiation is used. If I live for another 15 to 20 years, am I going to be battling brain cancer?
- If I choose the radiation option, is it better to do the single fraction surgery (SRS) or take smaller doses in several sessions (FSR)? Could someone compare the advantages and disadvantages of the Gamma Knife vs. Cyber Knife vs. Proton Beam procedures? I don’t know what UAB uses but I plan to find out more at my next appointment.
- From what I have been reading on this forum, some members have started having re-growth problems only a few years after a procedure. I read where some have been told that surgery after radiation is not an option. How about additional radiation if the first one is not completely successful?
- I want to get a second opinion (maybe more than one) and would welcome suggestions as to where and how that should be done. Are there other recommended facilities in the Southeastern US or should I broaden my search? Some forum members have commented on good experiences with Vanderbilt. I assume that I need to get copies of my MRIs and hearing tests before I see another surgeon or should I contact the reviewing surgeon first to see what he needs and in what format? Should I get a copy of my records or is this something best sent directly from doctor to doctor?
- Even though my hearing is not good in my right ear, I do still have some function there. While the tumor is still small, is it likely that I can retain what hearing I still have and not suffer any facial nerve damage? Are the risks worth trying to save the damaged hearing in that ear?
- Will the tinnitus and balance issues likely go away after surgery (or radiation)? I’m guessing that the tinnitus was originally a result of my military service and was not caused by the tumor …..or could I have had the tumor that long? I have been experiencing it for 50 years or so now but it has gotten worse with time.
