ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Ken35051 on November 27, 2018, 01:53:51 pm
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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.
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Dear Ken,
I do not frequently provide comments to forum posts, but want to offer a few important points:
1. If your MRI's were not performed on the same machine, that could explain the variance in size, so first consideration is perhaps to wait and see in another six months if your AN is actually growing.
2. Your tumor is very small and all options (surgery, radiation, observation) are likely on the table- there does not seem to be any reason to rush, so get multiple medical opinions and make sure you understand what each doctor tells you. We have lists of questions to ask your surgeon and radiation oncologist, so you might want to locate those on the ANA website, print them and bring them to your doctor visits.
3. Tinnitus is very common, both in AN patients and the general population, so you may likely never know where yours stemmed from. In any case, it will most likely not improve, but there are hearing devices and apps that help some patients. There are also methods to learn to help you remove your attentions from the tinnitus.
Allison Feldman
CEO, ANA
director@ANAUSA.org
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Hi Ken,
I live in Birmingham, Alabama and was diagnosed with an AN the exact same size as yours in January 2017. I have done quite a bit of research since then and have seen several doctors in the Birmingham area. I will send you a PM with more detailed information about specialists in our area and what I have learned over the past year. I have become acquainted with quite a few AN patients in Alabama and in the Southeast. You are not alone here and have a variety of treatment options.
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Dear Ken,
I do not frequently provide comments to forum posts, but want to offer a few important points:
1. If your MRI's were not performed on the same machine, that could explain the variance in size, so first consideration is perhaps to wait and see in another six months if your AN is actually growing.
2. Your tumor is very small and all options (surgery, radiation, observation) are likely on the table- there does not seem to be any reason to rush, so get multiple medical opinions and make sure you understand what each doctor tells you. We have lists of questions to ask your surgeon and radiation oncologist, so you might want to locate those on the ANA website, print them and bring them to your doctor visits.
3. Tinnitus is very common, both in AN patients and the general population, so you may likely never know where yours stemmed from. In any case, it will most likely not improve, but there are hearing devices and apps that help some patients. There are also methods to learn to help you remove your attentions from the tinnitus.
Allison Feldman
CEO, ANA
director@ANAUSA.org
Very well said. My sentiments exactly.
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Thank you all for your prompt replies. I have been going through forum comments for the past couple of weeks now and I have found them very informative.
My last three MRI's have all been at the same UAB facility so I have not given as much consideration to the older ones that were taken at the VA.
I intend to watch and wait for as long as seems reasonable. My biggest concern right now is that my hearing seems to have really deteriorated over the past 2 or 3 years. Also, I am concerned about my balance .....I seem to be a lot more clumsy these days. I don't know if it is advancing age or advancing AN.
notaclone 13:
Yes, I would like to talk with you and others about what you have found out in the Birmingham area. I'm not sure about how to send or receive a PM .......but I think I am about to learn. :-)
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Ken, I sent you a PM. Just tap on “My Messages” to the right of the orange Home box.
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University of Alabama at Birmingham Hospital is ranked in the top 50 in the nation by US News & World Report at Neurology & Neurosurgery.
Their ranking is comparable to well-known hospitals in that specialty as Duke, Emory, Yale, Vanderbilt and Wake Forest. You are fortunate to be near such a respected medical facility. Hope it all works out for the best.
https://health.usnews.com/best-hospitals/area/al/university-of-alabama-hospital-at-birmingham-6530304/neurology-and-neurosurgery
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Thank you for your comment Buzneg. I was not aware of UAB's ranking and it does add a measure of comfort in dealing with their physicians.