Houston Gamma Knife / FSR

[Tigermaiden]

I was diagnosed with a 1.5cm AN last fall.  My second MRI taken this month showed no change in size.
I have lost 30% of my hearing and 90% of my balance on the right side with occasional headaches, dizziness and tinnitis.
Am trying to decide between FSR and GK in Houston.
I would love to hear from anyone who has had any form of radiation or is exploring these options.
Any guidance or input would be appreciated.  I am sleepless in Houston.

Thank-you !

[shoegirl]

Tigermaiden,

Welcome!  I have a similar size AN and had mine treated with Cyberknife in December.  I am very happy with the results so far.  I still have the same level of hearing, balance, and overall feel really good.    If you read through some of the posts in this section you will see some of the results members have had with different forms of radiation.  I chose CK because of the accuracy, I didn't want to wear the headframe, and I liked that it is done in 3-5 sessions.  So I can't speak to FSR or GK, I would happy to answer any questions you might have otherwise.

Good luck in your decision process,

Suzanne

[ppearl214]

Hi TM and welcome!

Same as shoegirl as I'm having my CK next week here in Boston.  Same reason as well... accuracy.  My AN is still in the left IAC and accuracy is the key for me.

I know that, based on my research (Mark, correct me if I'm wrong, ok?):

CK has an accuracy of approx .87mm..... GK has an accuracy of 1mm-2mm... FSR accuracy falls around 2mm-4mm.  So, for me, in weighing this all out, the reason I went with CK is ... if we are going to hit the thing, it better hit it as my AN is still smaller compared to others (only 1cm x 7mm x 4mm) and still in the IAC.

All of these choices are very viable.  I think it is personal preference if you want the headframe or not, as well as 1 dose with GK vs. Fractionated doses (anywhere from 3days to 28 days) course of treatment.

I learned that:

CK will be 3-5 days (5 for me) with minimal side affects (hopefully). Mask, no headframe, highly accurate. Short term available data of efficacy as it's not been in existance as long as other radio-treatments, but data looks good thus far.  Hearing preservation runs approx 60-85% of current hearing levels.

GK is extremely viable, one dose, temporary discomfort of headframe (from what I have read and researched).  A proven track record of efficacy for almost 30 years.  Didn't think hearing preservation % was as good as CK but hoping someone here can confirm.

FSR (as well as Proton Treatments) very viable options as well.  Proven treatments in their histories although accuracy not as good as other options. Image guidance used during treatments, more "rigid" mask to hold head in place.  Didn't think hearing preservation % was as good as CK but hoping someone here can confirm.

These are just things to share off the top of my poor little head but a head start. Hoping others will chime in with their thoughts as well.

TM, welcome... we're all here for you!

Phyl

[minnkris]

Tigermaiden,
I had GK last August and an MRI in late September already showed my AN had shrunk. My AN was a bit smaller than yours (8mm x 6mm) and I got 2 five minute doses of GK and that was it!
The head frame is not that uncomfortable, it's very light weight. I was given something to relax me first (valium family) and local anesthetic for attaching the frame. I had some minor swelling for about 2 days.
I have not had a hearing test since, but I personally think my hearing is the same as it was (also about a 30% loss).
All in all my GK experience was very good. However, we all know that not everyone reacts the same. I have read some pretty sad GK posts here. The best advise as always is research, research, research.
Good luck to you.
Kris

[SuzeAN]

Hi Tigermaiden,

Just thought I would put in my 2 cents...javascript:void(0); I had CK in Oct 2005 for 2.5cm AN; and so far so good.  I go for 6 month MRI this month, and so far have had no side effects requiring steroids.  The treatment itself was easy, no head frame and like Shoegirl I chose CK for its accuracy.  There is information at www.Cyberknifesupport.org that may be helpful for you, also www.irsa.org.  Good luck with you information gathering journey, plus there are many experiences to read about on this site...I have found this site extremely helpful and encouraging!

Cheers,
Sue

[Boppie]

I had translab in Houston.  My doctors come from the group with Dr. Coker as the head honcho.  You can find them in the Houston phone book or online. Type in Coker and you'll get there.  I simply loved Dr. Vrabec for my surgery.  Any info I can give about the surgery option, I'd be happy to.  I haven't met any radiation or Gamma knife patients.  I know of three or four other patients who have had translab in Houston.  ANs are treated in San Antonio, too.