ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: ANER on July 26, 2016, 08:10:40 am
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Hey Folks,
Diagonsed last October (2015)with a 1.1cm AN... Reserached everything, consulted you all, then got 3 opinions..In the interest of brevity i'll give you the cliff notes version:
Dr. Friedman (USC) - Recommended Surgery as soon last December.. Would go Retro approach but highly suggested I get it out ASAP
Dr. Schwartz (House)- Recommended Surgery soon but not as imminent--He would have gone ahead with surgery in Feb/March 16- He would go Middle Fossa in an attempt to preserve my hearing.
Dr. Mckenna (MEEI) - Recommended watch and wait, went back last May and had no growth, he continues to recommend watch and wait but if/when surgery is the option he'd go Retro knowing the information he has now.
I live 45 minutes outside Boston. My tinnitus is getting much louder than last year at this time so I imagine my hearing is getting worse as well in the affected ear. My favorite recommendation was from Dr. Schwartz at House who is opting for middle fossa. MEEI/MGH said, he go wherever you like, if you get it removed somewhere else we'll still treat you after. I do like Dr. Mckenna as his demenaor is very good.
My question is (and I know it's hard to give an answer cause it's my noggin): Should I stay with Dr. Mckenna on the watch and wait train or go Dr. Schwarz at House for the Middle Fossa maybe hearing preservation surgery? I'm pretty certain my insurance will cover the out of network Surgery. My current issues are increased tinnitus, minor balance, fatigue.. Thanks in advance.
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For what it's worth: If you've had no growth I'd continue on w/ the W/W until things changed "enough" that something MUST be done. Your AN is not a large one and surgery is a drastic move in my opinion.
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I would worry about the tinnitus. I think a general rule of thumb, with exceptions of course, is that you often keep what you came with. I think if the tinnitus is bad, it is a quality of life issue. I had radiation of a tumor about that size because it involved the facial nerve.
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I live 45 minutes outside Boston. My tinnitus is getting much louder than last year at this time so I imagine my hearing is getting worse as well in the affected ear.
You don't want to imagine or guess what the status of your hearing is. You need a good quality hearing test so you can make a better educated decision. Many people think their hearing is much better than it really is so, knowing for sure where your hearing is at is a must.
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ANER,
Only you can decide. But we can help you think it through. If you want the relative certainty of getting it over with, then microsurgery is a good option. If you prefer to avoid surgery and take the risk to monitor whether it causes more damage over time, then wait/watch is a good option. If hearing preservation is important, then I would think surgery sooner rather than later would make sense. But this is really a question for those doctors. Ask them not just whether you should wait and watch or not. Ask them what is better for your specific concern (eg, hearing preservation, etc). All the doctors you mention are top knotch. I had Schwartz with an excellent outcome.
By the way there is also radiosurgery. I think there are some very experienced radiosurgeons up there in Boston. And there is always Dr Chang for Cyberknife in CA who gives free phone consults if you send him your MRI. He has claimed some success with hearing preservation with CK.
Let us know how it goes. We are here for you.
Rich
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ANER,
At 1.1 cm you have some time. Mine was 1.4 and I elected to have it removed at Keck last week. I hoped they could save my hearing, but I did lose it. However I have no other bad side effects - face is fine, taste is fine, balance is improving with lots of walking. I had no pain really, just taking Advil once or twice a day. My eyes are off a bit (some double vision) but improving with daily exercises. I am glad to know the AN is in the rear view mirror now.
I'm not finding SSD to be so bad, although I slept right through my alarm this morning, with good ear on the pillow - trying to wake early and walk before it gets hot. I'll check out hearing devices after I heal from surgery.
By the way, retrosig has 50/50 chance of saving hearing. Middle fossa odds are better (70/30?) - my tumor was too "medial" (in the CPA) for middle fossa. Docs at Keck can do middle fossa, you may want to ask why they did not recommend it for you.
I decided to take mine out at 1.4 because I did not want to allow it to get bigger and also my health and my insurance today are good. The risk of side effects increases as the tumor size increases.
For the tinnitus - I heard Gingko Biloba helps but only if you take it every day. Someone told me their tinnitus just stopped after 6 mo Gingko, and only returns if they stop taking it. I ordered 6 mo supply and plan to take it daily for a while and see what happens. My tinnitus is not that bad but is loud at times. The person I talked to uses Gingkoba brand so that's what I ordered at drugstore.com, costs $10/month.
Docs are great in Boston as well as in LA (House or Keck).
Wait and watch is also a rational thing to do, supposedly like 50% of tumors sit at same size for years. But if it's growing then personally I think it's better to take it out sooner rather than later. I'm 54 so I didn't want to wait and then find it resujme growing in 5 years or so, when it may be harder to recover from surgery and my insurance may not be so good.
The surgery is quite serious - if you have access to docs doing several a week (not month or year), that's the way to go.
Good luck with your process.
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ANER,
It is your decision when to get treatment, but keep in mind that ANs can grow in spurts so it is important to get continued MRIs to monitor. Symptoms can increase (e.g. worse tinnitus and decreased hearing) even if the tumor doesn't grow.
I noticed you spoke with a Neurotologist from USC and MEEI, but a Neurosurgeon from the House. I'd suggest you speak with both physicians (Neurotologist and Neurosurgeon) at all facilities. Keep in mind that the Neurosurgeon is the physician that removes the tumor from the nerve(s). The Neurotologist performs the opening and closing. You would like to see the opinions from both physicians match up at each facility, but it may also help you decide on the best approach and facility.
Hearing preservation often depends upon the location of the tumor. You didn't mention the location of yours, so this should be discussed with your physician. For example, my AN was next to the cochlea, so I completely lost my hearing in that ear within 6 months of diagnosis. If the tumor is further in the canal, you have a better chance of hearing preservation.
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I was on the W&W train for 5+ years. My decision to do a microsurgery was a very natural one. Things got worse this Jan. I got a very severe vertigo (I couldn't stand up and move) and a couple of moderate vertigo. All Doctors suggested I have to do something. So I did Middle Fossa at House. It seems that the Keck only does Middle Fossa for AN size <=10mm. At House, they can go with Middle Fossa for AN size < =18mm. In this forum's archive, I could see someone did Middle Fossa at House with AN size 20mm.