ANA Discussion Forum
General Category => Inquiries => Topic started by: lmonroe on November 30, 2016, 02:45:27 pm
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I was diagnosed in August with an AN in the left ear. I started to go deaf in my ear and have loud ringing (tinnitus). The AN is at a 2.5 cm size. I had severe vertigo a few years back with on and off instances but not as severe as the first time. Balance can be an issue, but I never know when it will show up. Usually, when I am tired. Now I am having facial numbness on the left side of my mouth and at times acute pain. When I touch this area it feels very tender. Anyway, the neurotologist recommended surgery ASAP. He scheduled an appointment with a neurologist. The neurologist said, "You're 58, AN's grow slowly so you'll be dead in around 10-15 years so no reason to be worried." I was appalled and made to feel like a hypochondriac. So I go back to the neurotologist and he changes and agrees with the neurologist! Any ideas folks? I have read quite a bit and it seems like surgery is the better option over the radiation. Help!
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Hi Imonroe, welcome to the forum.
58 + 15 years = 73 years. Life expectancy for a 58 year old is 25 years (from https://www.ssa.gov/cgi-bin/longevity.cgi). So your life expectancy is to age 83. More or less depending on your current health and future lifestyle.
Your tumor is about the size of mine. Your symptoms sound a little worse. How bad is your hearing loss?
As you know, you have three choices: microsurgery (craniotomy), radiosurgery (radiation) or conservative management (watch and wait).
What I am doing is lots of research, regular hearing tests and some visits to neurosurgeons and radiosurgeons. The intention is to do this and not act until my 6 month MRI. Of course, a change of symptoms may change this approach.
If there is significant grown, I'll do my preferred intervention (currently gamma knife, but is still changing). If it has no growth, I'll keep observation for a couple more years. If it shrinks then all is good. The following probabilities are from http://www.bhtinformatie.nl/pdf/ingrijpen.pdf . "significant growth in 20-45% after 3-5 years of observation", "Tumor regression or shrinkage is reported in 4-22%". So rough numbers are growth 30%, stable 60%, shrinkage 10%. You get a very wide range of probabilities depending on what you read. Also definition of growth can vary from absolute numbers of 1 mm to 2 mm to 3 mm and rates of 1 mm/year, 2 mm/year or 3 mm/year. If you are looking at numbers from a specific study, take into consideration the definition of growth.
My suggestion is to research as much as possible and talk to both surgeons and radiosurgeons. In your case, it looks like you can afford to wait until the 6 month MRI, but that will need to be confirmed by someone that is qualified. I recently re-read a contemporary paper (March 2016) that I find worthwhile (http://appliedradiationoncology.com/articles/interdisciplinary-management-of-acoustic-neuromas). Full of information and references.
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I think your doctors need to brush up on their expertise. I would suggest finding someone at a big AN center and go for a surgery consult and radiation consult. Your doctors have presumed two things that could be erroneous. The tumor is slow growing, and it will always be slow growing. They can grow at different rates, from not at all, to get it out now. They may assume that since you have lost hearing, no more damage can be done. That is clearly false. You can have damage to the facial nerve with continued growth, which is a major major problem, or, it can grow to and contact the brain stem which makes treatment more complicated, particularly surgery.
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it can grow to and contact the brain stem which makes treatment more complicated, particularly surgery.
Blw, do you mean particulary surgery or radiosurgery?
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Surgery is more complicated, but I don't know if they will even do radiation if it is touching the brain stem.
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Mine is touching and pushing the brainstem. LINAC based radiosurgery has said yes. I've yet to go to the local Gamma Knife unit, but I suspect they will also say yes.
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Actually, this is an important question for anyone considering treatment. When is radiosurgery no longer an option? My guiding document is http://bmjopen.bmj.com/content/3/2/e001345.full.pdf which states in the conclusion, "The available evidence indicates radiosurgery to be the best practice for solitary vestibular schwannomas up to 30 mm in cisternal diameter".
Of course, I'll know the answer when I've had a consult with the local gamma knife unit, but in the mean time, this is the best guidance I've got. I'm assuming cisternal means the same as extrameatal = extracanalicular = cerebellopontine angle (so many names for the same thing!).
Hard to imagine a 30 mm tumor that is not well and truly compressing the brainstem.
Forum readers, can I conduct a survey - was your tumor pushing the brainstem and were you considered a gamma knife candidate [by the gamma knife unit]?
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45 mm.. definitely pressing on the brain stem. From the MRI "There is significant mass effect on the right middle cerebellar peduncle and right side of the pons"
I was told that surgery was the only possible treatment. The risk prior to surgery was that they cerebellar fluid would stop circulating as a result of the pressure on the brian stem. However, the surgeons did NOT express concern on operating near the brain stem. The main concern was the number of nerves (5-12) that were affected by the tumor.
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I don't think doctors like getting radiation near the brain stem because there is a lot of important stuff in there that controls involuntary essential functions. They also don't like to radiate the cochlea because I think it is more sensitive to radiation. The facial nerve tolerates radiation fairly well. The hearing nerve does not. There are so many exceptions to whatever procedure is chosen, however for a small to mid size tumor in a safer area, and assuming age is 50+, as I have said many times, I think radiation will be the standard of care in the future. Cheaper, faster, less morbidity and mortality, and I would expect radiation methods to improve faster than surgical advances.
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Hard to imagine a 30 mm tumor that is not well and truly compressing the brainstem.
Forum readers, can I conduct a survey - was your tumor pushing the brainstem and were you considered a gamma knife candidate [by the gamma knife unit]?
Yes, my AN was 2.6 X 1.6 and had things pushed over pretty good on the brainstem. Quite noticeable on the MRI. Happily, 6 years after GK treatment it has now receded off the brainstem. The MRI now shows the right looking just like the left. :) The surgeon has told me the brainstem was looking very good at this point. Although there are always exceptions I would agree that 3cm is the threshold most doctors are looking at for radio.
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rupert, do you know if the 2.6 cm figure includes the IAC?
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The 2.6 was the vertical measure. The horizontal measurement was 1.6 from the outside of the IAC . If you added in the IAC it would add another 5-6 mm to the 1.6 or 2.1cm total.
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Thank you so much everyone for the information. I have already lost at least 90% or better of my hearing in my left ear already. Now I am experiencing facial numbness to tingling to severe tenderness. This lasted a couple of days with nauseous and extreme tiredness. I'm not sure if the tiredness is a part of this or not??? My next MRI is on the 14th so I guess that will give us a baseline on the growth. I live in Montana and not many super experienced docs from what I have been told. What does everyone suggest? My general doc advised me to go to the Mayo Clinic. ???????????????
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I'm from Sydney, so I had to look up where Montana is.
Many report tiredness from an AN. For me, that's also the case, but not too badly.
For microsurgery, the best place appears to be House Ear Institute in Los Angeles.
For radiosurgery, the best appears to be Dr Chang at Stanford or Dr Lunsford at University of Pittsburg.
For conservative management, I don't know of a proponent of conservative management. Others may know of someone.
For pharmacological solutions, it appears there are not yet available, but some may be in clinical trials.
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House in CA is the top for AN surgery. Mayo clinic was recommended by your Doctor since it's listed in the US News and World report as the top neurosurgery, with New York Presbyterian and Hopkins, number 2 and three.
Facial numbness is typically a sign the tumor is pressing on the trigeminal nerve. 2.5 CM tumor is normally able to be treated with all options: radiation, surgery. The complexity with radiation is the tumor may expand while the tumor is dying and during this time it may apply further pressure to the nerves. This may take up to two years (I believe 6 months to 1 year is the standard)
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A combination of literature and experience here would likely say House for surgery, Pittsburgh for Gamma Knife, Stanford for Cyber knife. There are also many other places that are outstanding, make sure you pick one that specifically mentions that they treat these. <http://www.neurosurgery.pitt.edu/centers-excellence/image-guided-neurosurgery/acoustic-neuroma>
<https://stanfordhealthcare.org/medical-clinics/cyberknife-stereotactic-radiosurgery-program.html>
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I, too, live in Montana--I'm the same age and also received somewhat dismissive treatment by the local otologist/surgeon. I also sent my MRI to House Clinic. They responded, on the other hand, very professionally. I've decided to have surgery there on March 1st. If you have Blue Cross insurance here in Montana, it will consider any medical work done by House as in-network. They are an alternative to Mayo. That said, a lot of Montanans do go to Mayo for other medical problems.
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lmonroe, 2.5cm is considered large, and your facial symptoms are not a great sign.
microsurgery is a pretty big deal, but if performed by a team with a lot of experience specifically with ANs, you can have a great outcome. the larger the tumor gets, the higher the rate of complications after mainly involving facial paralysis - temporary or longer term.
ANA site has lists of surgeons around the US who do a lot of these surgeries.
have you confirmed if yours is growing or not (i.e. 6 month followup MRI)? quite a few neuromas are stable or even a few are shrinking, in which case wait & watch could be a good option.
I was personally not comfortable with the idea of radiation, just as many of the folks who choose radiation are not comfortable with the idea of microsurgery. it comes down to personal views and preferences.
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Sheba, your commentary here and in other entries is good and useful, however it is interesting that a 2.5 cm tumor is described as large.
In the literature, I've seen 2.5 cm described as small, medium, moderate and moderately large.
Small: https://www.cambridge.org/core/services/aop-cambridge-core/content/view/222576A67CCE48C1EF730C11F57F0A9D/S0317167100035526a.pdf/div-class-title-acoustic-neuromas-management-of-204-cases-div.pdf
Medium: http://www.mayfieldclinic.com/PE-Acoustic.htm and https://link.springer.com/chapter/10.1007/978-4-431-53942-1_3
Moderate: http://american-hearing.org/disorders/acoustic-neuroma/
Moderately large: "New and Modified Reporting Systems from the Consensus Meeting on Systems for Reporting Results in Vestibular Schwannoma"
It could even be argued that a 2.5 cm tumor could be classified as large, since some say >2.5 cm is classified as large.
So, a 2.5 cm tumor could be described as small, medium, moderate or moderately large (or even large)!
I guess you could call it what you want, but the good thing is that at 2.5 cm all three options are available to you (surgery, radiosurgery and observation).