Author Topic: W&W is over, treatment consult tomorrow  (Read 2986 times)

free2be

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W&W is over, treatment consult tomorrow
« on: July 01, 2010, 01:23:55 pm »
This is my first post, though I've been reading the forum a lot in the last week. Everyone here seems so supportive and the information has been invaluable in my preparation to talk to my doctor about my options. My AN was diagnosed about 2 years ago. It has grown more rapidly than expected. The doctor now indicates it is pushing out the nerve canal and heading toward the brain (or brain stem...I think I stopped listening in there somewhere). I've known it was growing, but until now there was not much discussion of treatment. The doctor mentioned radiation once as a "what if." Now with it approaching the brain (stem), I'm wondering if that is still going to be the best or most logical treatment. I can barely comprehend surgery. The fact that my mother died from a Glioblastoma multiforme brain tumor back in 1983 probably doesn't help, though I know this is by no means the same animal.

I'd be lying if I said I wasn't scared though. I haven't had the best couple of years health wise and I don't seem to have much time to get past one thing before another crops up. I left work last October on disability because of severe depression and fatigue. In March, I finally found out it wasn't depression...it was adrenal insufficiency (Addison's Disease). Another 1 in 100,000 of rare diseases. How's that for "luck"? I was close to an adrenal crisis it had gotten so bad. I guess, under the circumstances, I was doing pretty good just surviving. The lifelong hydrocortisone treatment finally really kicked in about 3 weeks ago. Now, this week, I have this to deal with. I guess, the positive side is that, if this had come up a few months ago...I honestly don't think I could have dealt with it; surviving by resting and not doing anything was a good day. So, it's good that I feel better so that I can deal with this, though I'm not happy that I have to even think about it.

I've read a lot on here about the treatment options; pros and cons. I'll know more after tomorrow when I see what the doc has to say, how big the darn thing has gotten, and how close it is to reaching the brain, etc. I'm very comfortable with my Atlanta doctor. I've seen him mentioned on the forum several times. I'm not so sure I'm comfortable with the hospital though; so, I have to sort that out.

So, I'll probably have more to talk about after tomorrow.

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

Jim Scott

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Re: W&W is over, treatment consult tomorrow
« Reply #1 on: July 01, 2010, 02:00:20 pm »
Hi, Connie ~

Although I'm sorry you have an acoustic neuroma, I'm glad that you found the ANAUSA website, decided to register and post your message.  Welcome.

You certainly have had a rough time of it recently and of course, an acoustic neuroma is no picnic, but they are non-malignant (99.9% of the time) and eminently treatable.  

Your doctor will advise you as to whether or not irradiation is still an option for you but please don't fear surgery any more than necessary (no one likes surgery) because many of our members (this one included) have gone through it and came out O.K.  We're here to inform and support you, Connie.  We've been where you are and understand your concerns and emotions as you deal with this AN business.  I hope you'll consider the AN forums a resource and please keep us informed as to how you're doing, because we care.  Thanks.

Jim
« Last Edit: July 01, 2010, 02:02:36 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

free2be

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Re: W&W is over, treatment consult tomorrow
« Reply #2 on: July 05, 2010, 10:46:53 am »
Thanks, Jim. You sure are a busy guy on here. You pop up everywhere :D

Last Friday my doctor indicated we needed to treat the darn thing. It is very close to the brain stem. He gave me options of radiosurgery, which is of the single dose LINAC type, which I don't see a lot about on the forum. The surgical option he offered is translab. I'm having trouble with that as my hearing is still very good and he said I would be deaf in that ear with that procedure. I am 51, which I guess puts me on the line between the two major options. Will I outlive possible regrowth or what? I'm trying to figure out what to do.

He indicated that the LINAC is more accurate than GK or CK (I'm not sure which). I read about the annoying symptoms from radiation on the forum and the potential hearing loss anyway, which the doctor did say was probable. The brain fog/wonky head, fatigue, etc. concerns me. I have Addison's Disease and more fatigue is the last thing I need. But, I sure am having trouble considering surgery if it isn't necessary.

Anyone with LINAC treatment 1 1/2 years out or so who can tell me how they have done would be appreciated.

For those who have not been treated, does your hearing vary? I was sure the hearing test in June would show some loss in that ear. I can't stand to talk on the phone with that ear anymore. It sounds so muffled. And other times it just seems that ear is not getting what the left one is, but they said there was very minimal change at the high frequencies and was still excellent. I wonder if that happened to be a better hearing day compared to others I'm experiencing.

Thanks, Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

leapyrtwins

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Re: W&W is over, treatment consult tomorrow
« Reply #3 on: July 05, 2010, 04:11:17 pm »
Good luck with your consultation tomorrow, Connie.

I hope it brings you closer to making your treatment decision, which is never an easy thing to do.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: W&W is over, treatment consult tomorrow
« Reply #4 on: July 05, 2010, 11:22:54 pm »
I don't think you can get out of the "brain fog/wonky head, fatigue, etc.", no matter which treatment you have. Your head is not designed for this kind of thing!

That said, there is no reason to think it won't be tolerable, if somewhat inconvenient. I had CK in Sep 2007, and it was bumpy for the first six months, but after that it settled down, and I have been fine ever since. I would think the one dose Linac you mentioned would be similar.

Best wishes, Connie.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

 


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