Gamma Knife...is it working for u ???

[tatianne]

Hi everyone, hope you are all doing well.

Im strongly leaning towards GK for my 8mmx3mm AN.
Im seeing a neurotologist who spent several years doing studies at Harvard on ANs,
he feels that GK is the best option for me, that the possible side effects and complications that
arise from surgery are likely.
He told me his goal is to treat his AN while preserving my quality of life as much as he can.
Anyways, my question is to those of you who have had GK or cyberknife (my first choice but at this poitn i dont hink its available in Canada):
Are you satisfied with your choice ?
Has the procedure been a success so far ?
Has anyone had re-growth ?? or continued growth ?
Ive read that the success rate is around 98% but i feel like ive read a lot of stories
of re-growth.
All your answers will be greatly appreciated.
TY
T

[Sue]

Hi Tatianne!

I was thinking of you when I saw that story on the news of the bridge collapse in Montreal.  I thought...Oooooo, hope Tatianne is okay.  And here you are!!  Good.

I had GK, but it was just this past April and I think it's too soon for me to give you any answers to your questions, except to say so far, so good!  However, you could visit the GK support site at this address and see what some of the veterans have to say.

http://health.groups.yahoo.com/group/Acoustic_Neuroma_and_Gamma_Knife/

Sue in Vancouver

[GM]

Hi Tatianne,

I had my GK in November of 2003 for a 1.8 cm tumor.  The only symptoms I had were hearing loss and tinnitus in my left ear.   After treatment there is a 35% chance that your tumor will swell after the radiation...I fell into that category.  My doc told me that the tumor was reacting to the radiation.

Are you satisfied with your choice ?    Yes, I still have hearing in that ear, and still can use it.  My hearing level is just about the same as it was before the treatment.

Has the procedure been a success so far ?   My tumor is just hanging out at the moment.  It will be 3 years in November of this year.  I'm now on a yearly MRI follow-up with hearing/speech recognition tests done at the same time.  My tumor has shown signs of darkening in the center but has not shrunk.  Although, success is not always measured by shrinkage of the tumor...the object is to stop the growth.  Not all tumors will shrink.  Your doc will tell you this as well.

Has anyone had re-growth ?? or continued growth ?    I guess you can say I had continued growth because of the swelling...but it is currently holding at 2.1 cm (originally was 1.8 cm)

The reason I chose the GK was after an exhaustive research effort, I decided that I wanted my treatment to 1) try and save the hearing that I had,  2) Least complications as possible,  3) Return to work as soon as possible.  I had the GK on a Friday, and returned to work the following Monday.  The only people that knew were my supervisors. 

I hope this helped.

Gary

[Goh]

Hi Tatianne,
               Just like Gary, I opted for gamma knife after exhaustive research and also indepth discussion with the ENT surgeon and the neurosurgeon.  I had the GK done in August 2004 and so far I have had 2 yearly MRI scan, in June 2005 and June 2006.  So far so good! No further growth was detected and my next MRI scan is in June 2007.

               In answer to your query, yes I am very satisfied with my choice of treatment. It was fortunate that my tumour size was within the acceptable size range for GK (2cm by 1.8cm).  My hearing loss pre and post GK was the same in that I have no useful hearing and am now relying only on my right ear.  There were no complications as a result of the GK other than some pain on my head where the screws of the headframe were attached as well as some severe vommiting for a couple of days. I was back to work after a week.

                 Tatianne, whatever choice you make I trust you would have done so after extensive research and discussion with your doctors.  Personally, in view of the relatively small size of the AN I think GK is a good option (though I do not have anything against the other forms of treatment). By now you would have found out all the pros and cons of each treatment. 

                   I wish you all the best and hope that the above is useful to you.

Goh from Singapore

[tatianne]

thank you all for your responses and taking time to share your stories.

I have decided on GK unless my next MRI in January gives me ay reason not to.

Im happy to hear that you are all doing well, moving forward with life in a positive way.
It means so much to hear personal experiences and feelings, i will definitly do the same after ive had my procedure.
Thanks again
T

[mll]

I had GK in March  of 2003 and am happy with my choice.  The tumor is not growing and is showing a tiny bit of shrinkage.  I did lose some hearing in my affected ear.  I also had periods of dizziness earlier this year. My neurologist said it was a delayed effect of the radiation.  I've been doing much better now and think GK was the best choice for me.  Good luck with everything.

mll

[Dicko]

I had Gamma Knife in 1997.  Four years later, one end of it started to grow, so I had a second round of GK, and so far it has been stable. I would still recommend GK.  If I can provide anyone with more info, send me email: wrommo@msn.com

[michael]

I wish everyone could have the same level of success that I have experienced. 11 MM 4/2004 and hearing loss is the same as before GK, 18 month MRI showed slight shrinkage and continued to be dark in the center. I must have had some swelling first six months after GK as I experienced some slight balance issues. Nothing to stop me from regular day to day, just a light headiness. I went in at 7:00 AM and was home and going to meetings that night, flew out of town for several days of meetings the next morning and felt fine. It took several days for the novicane to wear off in my scalp, it felt odd but was anticipated.
Best of Luck!!!

Michael