FRS or microsurgery?

[skier]

Trying to make a plan for treatment, and so far, lacking clarity on whether to go with radiation or microsurgery (and which one).

It is so strange to be told that treatment type and timing is, essentially, up to me, without my having any special background in this very complex medical problem (VS/AN).

After consulting with 2 ENT's, I am more confused than ever.

All I can think to do is to keep consulting with other experts until I have enough information to make a reasoned decision.

Is asking 4 or 5 MDs a pretty common thing? It seems like it.

All for now,
Skier
(I edited this post down, as I think I was in a whiny mood. Sorry about that.)

[CA Marti]

Hi skier,

I would agree that asking at least three experts, a combination of neurosurgeons and radiologists is the way to go. I found it helpful to get the opinion of a neurosurgeon who also does radiation equally helpful. I had a consultation with Dr.Link from the Mayo Clinic who I felt does surgery and radiation so he wasn’t as biased on treatment. I also found Dr.Schwartz from UCSD San Diego to be very honest and informative and extremely experienced at evaluating mri’s. Have you had more than one MRI yet? From the information I have found doing research on my own, I’ve come to the conclusion that small to medium acoustic neuromas should be initially observed and only treated if growth is shown or you’re experiencing many troubling symptoms. I understand how frustrating it is to have to figure this out on your own. I have found that I was less frustrated after consulting with five separate doctors. Best of luck on your journey and if you’d like me to forward some articles to you I’d be happy to, as I have been researching this for the past 6 months.
CaMarti

[skier]

Thank you, CA Marti.
That's very helpful. I agree that it seems best to have a consult from a highly qualified MD who has no inherent bias towards surgery or radiation.

I am trying to think rationally and comprehensively about a condition that I knew nothing about until this past October--while not feeling well since last March due to symptoms.

So, I will reach out to MAYO clinic, and thank you for that doctor's name. I continue to hope I can find an excellent treatment option in Boston, but perhaps first, as you say, it helps to clear the confusion through 4 -5 consults.

Best,
"Skier"

[CA Marti]

     I'm glad I could be of some help. I am in the same boat as you are and can only share what I've learned and maybe a little support, as obviously I also have no medical background.

I just thought I'd add a few more things that were suggested by some of the doctors I've seen. Several have said that I could take 81mg of aspirin daily, which I am doing. When I asked Dr.Link if he thought it would be a good idea, he responded that it's a good idea for everyone over 50 to take one. There was one study done by Massachusetts eye and ear I believe which showed that it could help slow or halt the growth of the neuroma. I also occasionally take turmeric, a very small dose, as it reduced inflammation in general. I figured it couldn't hurt. Also, a neurootologist told me to take at least 450 mg of magnesium per day as it may help to diminish the tinnitus. Also, in the early stages of my diagnosis I seemed to experience more twitching of my eyes and chin etc. and was given .5 mg of lorazepam to calm things down which I only took when needed but which really worked for me. I was also very nervous and anxious and it helped with that too. I also started using the calm app, and doing more yoga and walks in hopes of trying to stay calm. I think anything which helps you to reduce your stress levels may be a good idea. Just a few things which worked for me, but I'm sure everyone is a little different.
Best wishes,
CA Marti

[CA Marti]

Oh, yes, great idea! I’m all for the holistic approach! I only used the lorazepam in the very beginning even before I was diagnosed because I was trying to get a handle on my anxiety. I remember reading broccoli could help also, and luckily, I already eat it almost daily. Thanks for the article! I can never remember which sources I’ve read. I also read that Brussels sprouts and cabbage can have similar effects to the broccoli. And, oily fish may be also helpful, something about the omega 3, I can’t remember exactly but it’s so healthy, it couldn’t hurt! I also have been trying to reduce my sugar and alcohol consumption. Reduce, meaning I still have some, just not a lot. Thanks for the information.