One week into "the journey"

[Anomar11]

Yes indeed, it's been a whirlwind week.  Thanks to all of you, I've learned more in a week, than I would have learned in several months without this forum - and all with a positive spin.  I've been reading away.  Don't underestimate the power of this group.  To the founders, administrators/moderators, or whatever you're called  , to all of those working to offer other references, resources, old posters/new posters, thanks a MILLION times over.  I enjoy the sense of humor of many of you.  I appreciate individual outcomes shared (good, and those wished to have gone better) for the benefit of those of us starting out.   One thing about these little rascals, - it does get your attention as to what is and isn't important, and to be thankful for what we do have.  And as we all know there could be worse things, indeed, to get our attention.  At 51, I have several acquaintances facing cancer and ALS and the like diseases.
I have decided for my first consult at Mayo Clinic with Drs. Link and Driscoll.  My tumor measures 2 x 1.1 x 1.3.  There is no doubt in my mind that I want radiosurgery, if possible.  Main problem is significant hearing loss, not sure how bad, ear fullness, tinnitis, mild burning.  If asked about balance problems, I'd respond - no.  But, I've always been prone to motion sickness, so now if I get a little dizzy, I blow it off to that or hormones, or whatever.  I am hoping if I do have balance issues, it won't negate radiosurgery.  Will let you know how initial consult goes.   Mona

[Jim Scott]

Hi, Mona:

Thanks for the words of appreciation.  They help validate what we try to do here and encourages us to keep doing it.

I would guess that you'll be a good candidate for radiosurgery but of course, only a qualified radiation oncologist can make that decision. 

Acoustic Neuroma tumors are not all exactly alike.  Your AN may not be much involved with the balance nerve, making balance issues a moot point.  The MRI scan should make that fairly clear to the doctors you're in consult with at the Mayo Clinic so you'll know, soon.

I agree that having an AN certainly can refocus one's priorities, even though it's almost always a benign tumor.  Many of us have friends or relatives in middle-age with serious, life-threatening health problems.  Learning we have an Acoustic Neuroma is a bit scary at first, but when my pre-op tests came back showing that my BP was near ideal and that my heart, lungs, prostate, etc were all in very good condition, it was somewhat reassuring, considering many of my friends and relatives that are close to my age (65) are diabetic, overweight, have heart, joint or breathing  problems and so on.  I no longer take my lifelong good health for granted and am very grateful for being relatively healthy.  I underwent a delicate surgery to cut down my AN and emerged with minimum complications and was quickly back to my normal lifestyle.  Following radiation, I remained as good as ever and my last scheduled MRI showed definite tumor shrinkage and the beginnings of necrosis.  I am blessed, and I not only acknowledge it but fully appreciate that reality.  I didn't always - but I do now.

I hope and will pray that your AN is treatable with radiation and that such treatment is ultimately successful.

Jim

 

[sgerrard]

Hi Mona,

The sort of balance issues that are a problem for radiation are the real vertigo attacks - the kind that put you flat on your back for an hour. If you just have a little wobble, that's just a typical AN. I wobble when I turn quickly, but it isn't a problem otherwise.

I hope things go well with your consult, and that you can get the treatment you want.

Steve

[cindyj]

Hi Mona,

Welcome to the site!  I'm a relatively new one here, so don't have the expertise that so many others have, but know you will continue to find this site a great source of information and support.  I am still trying to decide what to do myself...Like you, I found this site before my first consult and it was very helpful to have learned so much before meeting w/ the docs. 

...Steve, can you elaborate on the problem of radiation with "real vertigo" attacks, please.  I did not realize that could be a factor in choosing radiation.  Thanks.

Good luck on your "journey," Mona, and let us know how things go.

Cindy

[sgerrard]

The problem with radiation for real vertigo is that it doesn't do anything about it. The story goes something like this:

If the balance nerve on the AN side is severely compromised, the brain will get mis-information from the nerve, which is worse than no information. The scrambled balance signal can produce the symptoms of true vertigo, a nauseating experience that often forces people to lie down and remain motionless for an hour or more.

In all AN surgeries, as far as I know, the balance nerve is snipped, since it is usually the origin of the AN. Once cut, the nerve produces no signal, and the brain can adapt over time to getting balance information from only one side. It may take several months to be riding a bicycle again, but the outcome is quite manageable.

Radiation treatment doesn't cut the balance nerve, or have much effect on it. If the balance signal is causing severe problems, you might need a surgery to disconnect the balance nerve after radiation. In such cases, it probably makes sense to have surgery on the AN in the first place.

Or something like that.

Steve

[cindyj]

Thanks, Steve.  That makes sense - in fact, think you and I had a brief discussion about this on a different thread in a slightly different context - I just didn't put 2 and 2 together.  Can I chalk it up to my AN reeking havoc w/ my thought processes?

Hope to hear from you again soon, Mona.

cindy

[er]

Good luck Mona

They have been an inspiration
eve

[leapyrtwins]

Mona -

"whirlwind" is a perfect word to describe AN journeys 

I've heard good things about Mayo.  Good luck with your appointment. 

Please let us know what the docs say.

Jan

[wendysig]

Mona -
Wishing  you good luck!  You are right about this experience making you revisit your priorities.  Hopefully it affects that particular part of your life in a good way, I know it did mine.  I have, in a very short space of time, become a lot more patient than I have been in quite a while and while I hae always tried o be considerate of other people's feelings, it has made me more sensitive in that respect too, for at least the most part.  Not bad things to come back to.  You are right about the folks in this support group.  They are the best!

Wendy

[Anomar11]

Thanks for the responses.

Wendy, I agree with you.  Positive things will and already have come from this.  I too find myself more patient, understanding and a better listener.  I work in healthcare, and I have a major change in perspective.  I'm up down and all around with this thing.   Between my panic attacks I believe I will come through this fine with many lessons learned. 

Mona