Author Topic: radiation  (Read 6631 times)

Lise

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radiation
« on: October 03, 2009, 12:06:51 pm »
 I was diagnosed 2 1/2 years ago with a very small acoustic neuroma, 2mm and I had significant hearing loss in my right ear as a result.  My hearing has drastically reduced since then and my ENT is now strongly recommending radiation, however, the tumor has not changed significantly.  I'm very confused.  I've made calls to all my doctors and am now waiting for appointments to determine my next course of action.  Has anyone in this forum had treatment in Syracuse NY?  My Sister lives in Boston and she thinks I'm nuts for not consulting with Doctors in Boston. ..any feedback would be greatly appreciated.
Thanks so much!      lise'
Lise'

Tumbleweed

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Re: radiation
« Reply #1 on: October 03, 2009, 01:09:35 pm »
Lise, I recommend you send a copy of your MRIs and any other test results to Dr. Steven Chang at Stanford University Medical Center. Dr. Chang has treated over 700 ANs with CyberKnife radiation and will review your case and consult you for free. His email address is: sdchang@stanford.edu

You don't need to travel to Stanford. You don't need to choose Dr. Chang as your doctor. I'm just suggesting you get another opinion from an expert for free; then do with the information what you choose. Stanford trains doctors around the world in performing CK. Dr. Chang is also a neurosurgeon, so you'll get two perspectives in one consultation.

As of a year ago, the University of Pittsburgh Medical Center also reviewed AN cases for free. The UPMC practices GammaKnife radiation, which is very similar to CyberKnife. Dr .Amin Kassam at UPMC reviewed my case for free and offered his recommendation for treatment. I no longer have any contact info for Dr. Kassam, so I suggest you google the UPMC to find it.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Lise

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Re: radiation
« Reply #2 on: October 03, 2009, 01:37:44 pm »
Thank you TW, I'll give that a try!
Take care, lise'
Lise'

Jim Scott

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Re: radiation
« Reply #3 on: October 03, 2009, 01:59:48 pm »
TW ~

I'm speculating here but I surmise that your doctor feels that your hearing is in some jeopardy if the AN - albeit small and apparently 'stable' - is not addressed.  I can't comment on the specifics of your AN situation, because (a) I don't have the relevant information and, (b) I'm not a doctor.   

There are very competent doctors that treat acoustic neuromas in many cities.  My neurosurgeon was located in New Haven, Connecticut (population 125,000) where he had been performing AN removals for over 30 years.  However, the bigger cities i.e. New York, Boston, etc. often have better facilities and a wider choice of doctors experienced in AN removals/radiation.  Something to consider when dealing with an acoustic neuroma, which is relatively rare.

Jim
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.

sgerrard

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Re: radiation
« Reply #4 on: October 04, 2009, 01:00:54 am »
Lise,

Although my AN was 8mm, it was still a small one, and I had CK 3 months after diagnosis, mainly to preserve the remaining hearing. That has worked out well so far, and I'm glad I got treatment when I did. I went to Stanford for CK, the place TW mentioned, but there are several here who have had CK in Boston as well.

Welcome to the forum, too.

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.

leapyrtwins

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Re: radiation
« Reply #5 on: October 04, 2009, 10:45:24 am »
Lise -

I'm with Jim.  There are doctors all over who treat ANs with radiation - the main thing is to find one with lots of experience.  Same goes for doctors who treat ANs with surgery.

I don't know any specific docs in Syracuse (although I have a good friend from college who's lived there all his life) but there are numerous excellent docs in NY and Boston.  So while, Dr. Chang @ Stanford is definitely an incredible doctor you shouldn't have to go to CA for treatment.

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

Tumbleweed

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Re: radiation
« Reply #6 on: October 05, 2009, 01:17:31 am »
Lise, one thing I did when I was getting my consultations after diagnosis was I asked each doctor who would they recommend treating me if it wasn't them providing the treatment. Once ego and potential profit are removed from the equation, you'll get some unbiased opinions. I found it helpful to hear from the doctors who else they would recommend.

Best,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ppearl214

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Re: radiation
« Reply #7 on: October 05, 2009, 05:45:21 am »
Hi Lise and welcome.

Well, I'll chime in as one that was treated with CK in Boston at Beth Israel Deaconess. I can well understand your sister's comments about Boston.... as a reality is... Boston is a medical mecca, offering all choices of AN treatments within a short distance. I know of MANY successful AN surgeries at MGH/MEEI.... successful CK treatments at BI.... GammaKnife Radio at Tufts, terrific surgeons at Brigham & Woman's, etc. 

If you have questions specific to Boston, myself or others here in the area can help answer questions.... and hoping some of the Boston gang chimes in for help.

Since your AN is deemed "small", you do have time to research your options.  Take that time, do the homework... and if it becomes overwhelming, take a step back to take a deep breath.  You are not in an emergent situation so get to know folks here and the info we can share.  In the long run, it'll be helpful in helping you make the best, well-informed decision you can for your particular situation.

Again, welcome.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Lise

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Re: radiation
« Reply #8 on: October 06, 2009, 07:54:49 pm »
Thank you all for your input, I know I have time to research, however, part of me can't help but feel like I've already wasted 2 years.  I know the tumor is small, but if I had been treated 2 years ago I might be able to hear out of my right ear now, and if I wait any longer, what's next?   I know it doesn't do any good to look back so I'm doing everything I can to remain positive and make the best possible decision.  I think I'm a little stressed, I've had other challenges that I've been able to conquer and I know I'll conquer this one as well.  Thanks for letting me share, it's nice to know you're out there!
lise'
Lise'

Lise

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hemangioma and Acoustic Neuroma
« Reply #9 on: October 06, 2009, 09:15:44 pm »
I have another question, does any one know if hemangiomas of the spine are related somehow to AN's?  9 years ago, I suffered severe sudden pain in my back, turns out I had a hemangioma in my spine which caused my vertebrae (T8) to collapse.  I was lucky enough to have a wonderful surgeon perform kyphoplasty on me and rebuild my vertebrae.  Do you think these two conditions could be related?  Just a thought, so many thoughts after reading so many stories.
Thanks again!
lise'
Lise'

Jim Scott

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Re: hemangioma and Acoustic Neuroma
« Reply #10 on: October 07, 2009, 03:58:07 pm »
I have another question, does any one know if hemangiomas of the spine are related somehow to AN's?  9 years ago, I suffered severe sudden pain in my back, turns out I had a hemangioma in my spine which caused my vertebrae (T8) to collapse.  I was lucky enough to have a wonderful surgeon perform kyphoplasty on me and rebuild my vertebrae.  Do you think these two conditions could be related? 

Lise ~

This a good question for a trained, licensed physician to answer.  However, as a non-physician I can tell you that a spinal hemangioma is somewhat similar to an acoustic neuroma (a benign tumor) but beyond that, I wouldn't care to speculate and risk offering inaccurate information.   

Jim
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.

Lise

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Gamma Knife
« Reply #11 on: January 21, 2010, 01:05:11 am »
Hi Everyone, it's been a while since I've been to the "Forum," and, well, I had Gamma Knife on Tuesday, and I have to say, it was quite the experience.  The worst part was screwing in the frame, it took several shots!!!  I'm feeling a bit tired, but can't seem to fall asleep.  I feel like I want to jump out of my skin.  Has anyone experienced this sensation?  Just curious. 
thanks!!!
lise'
Lise'

Tumbleweed

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Re: radiation
« Reply #12 on: January 21, 2010, 02:04:50 am »
Lise, assuming they gave you steroids as a preventative measure to stop any possible tumor swelling before it starts, the steroids are probably what's causing your insomnia and "feeling like you want to jump out of your skin." It should pass in a couple days, once the steroids leave your system.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

 


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