Re: RS Survey

[Guest guest]

Thanks ; as the replies are coming in, I am finding most folks have

had gamma knife, I am very surprised to hear you had linac clear back in

90! Obviously it worked well for you! Marie

-----Original Message-----

/nf2convegas2000.html

[Guest guest]

Hi, not sure who to send this too. So I'm sending it to everyone.

-Nisha

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>

>What type of radiosurgery/therapy did you have

>A: FSR (fractionated radition, 1 minutes 'zaps' given over 30 days

>Where did you have surgery:

>A: Massachusetts General Hospital, Cancer Center

>When did you have treatments: A: summer 1998

>What kind of tumor: A: bilateral acoustic neuromas

>If an acoustic Neuroma, was it a regrowth? A: No

>Were you deaf or hearing at time of treatment? A: HoH

>Did you have any facial paralysis prior to treatment? A: No

>How large was your tumor? A: 2-3 CM

>

>What was the treatment protocol? A: approx 1 minute " zaps " for 30

>consecutive days

>Do you know the amount of radiation you received, either by treatment or

>intotal: A: No

>If an acoustic Neuroma, was there a " headframe " , and what type?

A: not sure what it's called. I wore a mask that was specially made for my

face. It was make before the treatments out of wet, warm, mesh plastic and

it hardened to be a mask of my face. I wore that at each of the 30

treatments.

>Was there post operative swelling? A: No

>Were you given steroids? A: n/a

>How long did you take them? A: n/a

>How long after surgery did the swelling occur? A: n/a

>Was your facial nerve damaged from the radiation? A: No

>Was your hearing decreased or did it make you deaf? A: Yes, hearing was

>decreased, but not completely lost. I still have a little residual

>hearing.. not enough to use the phone... i need to read lips

>Was your tumor close to the brainstem? A: I'm not sure

>Was there scarring on the brainstem? A: No

>What were you told about the accuracy of your method of treatment?

>A: I was told there was a 90% chance that radition would 'halt' the tumor

>and there would not be a regrowth and a 50% chance of saving the hearing

>the way it was before.

>Did you have any complications, and if so, please describe?

>A: None

>What was the most positive aspect of your treatment?

>A: Not invasive, no pain, luckily no side effects, a chance to save my

>hearing (even though much wasn't saved)

>What was the most negative aspect of your treatment?

>A: Losing much of my hearing.

>Would you recommend it to others?

>A: Yes, but at a reputable facility and a top-notch doctor

-Nisha