Gamma Knife Postie

[luttman]

Had Gamma Knife on 2/8/12 at UPMC with Dr. Kondziolka. Everything went smoothly and I feel great. Back to work in 2 days and no side effects. Now just have to wait for the 6 month MRI.

[lrobie]

Hi Luttman,

Can you share any other information with us such as how big your AN is, any symptoms prior to treatment, were you watch and wait first, etc.?  Did you see other doctors at UPMC or did you just go to Dr. Kondziolka?  I've been going to UPMC since 2009 and see Drs. Hirsch and Gardner.  I'm still in the "what the heck am I going to do" stage.

Lisa

[Jim Scott]

Hi!

Congratulations on your successful, complication-free Gamma Knife treatment...and thanks for sharing it with us.  Much appreciated 

Jim

[luttman]

1.8 X 1.7 AN diagnosed on 12/15/11. I had tinnitus for about a year and half then started noticing significant hearing loss in October 2011. MRI shows tumor pressing on (but not compressing) brainstem. Slight balance issues and my PCP said he noticed some facial droop on 2/1/12. I met with Dr. Mcall at UPMC who recommended sub-occipital and said I would have 20% chance of having hearing. Met with Dr. Chen at Allegheny General who recommended translab because he said I would have virtually no chance of having hearing after surgery. Met with Dr. Hirsch to discuss cyberknife and then met with Dr. Kondziolka. Dr. Kondziolka has had a success rate of 97% with stopping tumors from growing. I believe he has treated about 1,500 people with ANs.

[lrobie]

Thank you for sharing the additional information.  Knowing you went to the same facility sparked my interest.  It sounds like you got your opinions and made your decision...and that was that!  How much hearing do you have now and did they think after GK there would be a chance for the hearing to improve or return?

Lisa

[luttman]

I initially didn't even consider radiation as an option. Then the more I read about surgery, the more terrified I became. I got a newsletter from ANA with some testimonials from people who had good results from radiation and started researching it. UPMC is the foremost expert in the country on Gamma Knife. They were the first hospital in the country to have a GK and now are the only hospital in country to have 3 units. They recently went over 10,000 patients treated with GK. Dr. Kondziolka has had the best results of anyone with stopping AN tumor growth.

I have enough hearing that I can still use my bad ear to talk on the phone but it is becoming more difficult so I generally started using my good ear. I think my tests were about 80% speach descrimination. It probably has declined a little. I think my hearing is about the same after GK, possible a slight bit better. But from what I've read, hearing can fluctuate after radiation. Additional hearing loss can occur from radiation damage to cochlea as well as tumor causing stretching of auditory nerve and also possible damage from radiation. Dr. K told me not to look into hearing aids as I could have further (or possibly complete hearing loss) in future. I will see where I am at in 6 months and then decide if hearing aid is a possibility. I have perfectly good hearing in other ear. I don't think there is much of a chance that hearing wll improve after radiation. I believe it happens in a small fraction of people. Let me know if you want any more information about Dr. K and GK etc. I could send you some web links of information I have tracked down.

[HisHands]

Hi Luttman..... I notice that most people on this forum usually schedule another MRI about six months after GK or other types of treatment.  My Neurotologist, Neurologist & Radiology Oncologist all recommended that I wait a year for my next MRI (not because of insurance or financial issues), but because they said numerous MRIs at six months often indicate swelling, etc. (which in turn promotes more anxiety in the patient).  They did, however, stress that IF severe symptoms manifest themselves that an MRI would be conducted immediately.   I noticed in your post that the highly respected Dr. K recommended another MRI at six months and I was wondering if this is his standard procedure or if he gave an explanation for six month MRI followup that you wouldn't mind sharing (or anyone else).  Just wondering....   Thanks, Emma

[rupert]

I also had GK at UPMC.   It was recommended that I have another MRI in 6 months.  I was not having any symptoms and the 6 months came and went,   so I just waited and did it at one year.    When I sent them the one year MRI results they never mentioned anything about missing the 6 mo. MRI.   Follow up care is really up to you.  They make recommendations that you should follow and it's up to you to get that done.  In my case,   they sent a letter back saying everything was fine and recommended another in a year (unless there were an increase in symptoms)  Then call them and go from there.   

[luttman]

When I went for my office visit to Dr. K, I thought he said 6 month then a year and a half MRI. He gave me schedule after GK that is for 0.5, 1, 2, 4, 8, 12, 16, 20 years (along with hearing test). I have already scheduled MRI and hearing test for August. Dr. K didn't explain why he schedules MRIs for these timeframes. I have read that swelling generally occurs between 6 and 18 months. Maybe 6 month MRI is scheduled to try and avoid the period of on -set of swelling and 1 year to detect if swelling is occuring??? Just a theory. I could call Dr. K's office and they could probably give me a better answer.

[luttman]

Nix that last theory. I found study that tracked tumor volume and it appears almost all tumors initially swelled in volume and then decrease over time beginning about 6 months. Maybe this will shed more light on the subject.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2588215/

[HisHands]

Luttman, I appreciate all the shared information.  I'm comfortable waiting a year for my next MRI (unless something unexpected arises).  I have to admit Rupert, I got a little tickled when I read how you just skipped over the recommended six-month MRI because you felt good.  Knowing how I am.... I would do the same thing   I do realize, however, that everyone responds differently to treatments and should follow doctor's advice