Author Topic: All who had Radiotherapy  (Read 9973 times)

plamping

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Re: All who had Radiotherapy
« Reply #15 on: September 11, 2011, 02:02:53 pm »
my husband is looking into gammaknife or cyberknife for his AN. Has anyone had experience with certian doctors or places in the Chicago area or Illinois?  He has hearing loss so far and it is about 1.6cm x 1.5 cm x1.4cm.  We are seeing a neursurgeron at Loyola this month after seeing the ENT neurosurgeon from Loyola.

deboline

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Re: All who had Radiotherapy
« Reply #16 on: September 12, 2011, 07:54:33 am »
see your inbox for telephone number!

JLR

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Re: All who had Radiotherapy
« Reply #17 on: September 12, 2011, 07:27:28 pm »
Hi Teripo, I know you have had concerns ( like all of us) as to which type of radiation and where to go..I might have a really great tie breaker for you.  Dr. Christopher Linstrom, A Neuro-otologist, New York Eye & Ear, lower Manhattan, 14th St. 212-979-4000, bring your last MRI and report. He will examine you and then read your scans. He is very very decisive and will immediately give you his opinion. After I had a few "2nd" opinions, I was referred to this doctor. He read my report and viewed my MRI and told me exactly what I should do and even who I should see for treatment.  He didn't say maybe you should do this or do that - he says whats on his mind. I felt very secure in my decision about CyberKnife after my appt with this very wise doctor.  Good Luck, JLR

teripo

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Re: All who had Radiotherapy
« Reply #18 on: September 15, 2011, 06:17:20 am »
Thank you I will look into that...Where did you go for treatment and how many?

GRACE1

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Re: All who had Radiotherapy
« Reply #19 on: October 18, 2011, 08:08:57 am »
I had Gamma Knife at Wake Forest (NC) in Dec 2006.  Everything went well.  The last time I had an MRI the AN had decreased in size by 50%.  I was supposed to have an MRI last Dec, but missed it due to the weather.  I kept putting it off for various reasons.  I will be going soon.  I am very happy that I chose GK, and I love Wake Forest and the people there.

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

Tumbleweed

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Re: All who had Radiotherapy
« Reply #20 on: October 18, 2011, 01:39:21 pm »
I had CK over three years ago (39 months ago). I had a pretty severe reaction to the treatment but an incredibly positive outcome:

Immediately after getting CK, my balance got (subjectively) about 15% worse (for around six months) and I suffered very profound fatigue (so bad that I could barely lift my head off the table and sit up straight and I was short of breath, for about a month). Strangely, my tinnitus immediately reduced in volume about 90% after treatment and has never returned since to its former loud volume. My doctor (the preeminent Dr. Chang at Stanford) told me that the tumor was reacting strongly to the treatment, which was a good thing, and I just needed to ride out my fatigue and dizziness (or take steroids, which I declined). He assured me I'd feel better soon.

Boy, was he ever so right. After swelling 33% in volume (at the 5-month mark post-CK), my AN shrank an almost-unheard-of 59% over the following six months (as shown on my 11-month MRI). It is now smaller than when it was first diagnosed. My balance began improving six months after treatment, and my energy came roaring back. I'd say my balance now feels like it's about 80% better than it was at the time of treatment.

I did lose a little hearing (around 15 dB) in my midrange and high frequencies, but I also gained a little bit back in my bass frequencies. Had I gone with surgery, I would've left the operating room completely deaf on my AN side (because of the size and location of my tumor; YMMV). Instead, because I opted to receive CK, I still have very useful hearing on my AN side.

If you want Dr. Chang's opinion (which he gives at no charge), email him at sdchang@stanford.edu. I cannot speak highly enough of him. He, and CK, gave me my life back.

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