My personal gamma knife experience 1-24-13

[robinb]

Hi Petrone-

I will update periodically, although so far nothing to report except came down w/a cold.

I finshed up steroid round yesterday, will see if anything changes.

Feel great, hearing the same as before, fluctuates and always best in the morning. If I press the pin sites, they are still a little sore.

No other symtoms!!!

[dtorres135]

sounds great. 

[sarahinPA]

Dtorres,

I had GK with Dr. Kondziolka in 2009 at UMPC. I had such a positive experience with him and his team there. He is a wonderful doctor, even though he was no longer treating me I was sad to see him go, and im happy hes still treating AN patients in NY or NJ for the time being.

I have also heard wonderful things about Dr. Lunsford at UPMC. Get a few consults if you feel comfortable with that, and pick the doctor that makes you feel the most comfortable.

For me, Dr. K. worked closely with my previous boyfriend's brother who is the trainer for the Pittsburg Penguins, therefore we "knew" him at the time and he was able to get me scheduled for GK 2 days after my initial consult. We were also so very close to Pittsburgh, that it was a no brainer for me.

My results were not typical, as I did have regrowth, and eventually had to have my tumor removed in 2011. But this is a low chance, and no one should be discouraged from my experience. I would have GK again if I was in the situation I was in back in 2009, with no questions asked. My tumor was 2.2 at that time, and then later grew to 2.5 before having it removed after GK. 

I went back to UPMC with Dr. Paul Gardner to have the surgery, and although I am deaf on that side, and have some daily discomfort around the mesh area, Im happy with my decision and my life has moved forward in such a positive way.

[arizonajack]

I have scheduled GK for myself this April after my AN showed growth from 1.4 cm to 1.8 cm on my annual MRI last October. I am pretty hopeful that this is the right decision for me and my family (wife and 2 teenagers), but it helps to hear that your experience has been positive.

Hi Petrone.

I see this is your first post here so welcome to the club. This is a great place to learn and get moral support.

I, too, opted for GK when my AN grew 20% in 6 months and had my GK on 1/22/13. My hearing on that side was already gone for a while so GK was a viable alternative to surgery.

GK is an outpatient procedure so you are in and out in a day. You can read my thread about my experience:

http://www.anausa.org/smf/index.php?topic=18287.0

GK has a very high success rate. Here's an article:

http://emedicine.medscape.com/article/857604-overview

[Petrone]

Hi Robin, glad to hear your recovery continues to go well! I have two questions, if you don't mind. 1) Was steroid treatment "a given" as standard post-GK protocol? and 2) any noticeable side effects from the steroids?

To Arizonajack, thanks for the warm welcome and encouragement! After reading and learning from this site for a couple of years, I thought it was time to formally join the group now that I have GK scheduled in April. Thanks also for the link to your personal GK experience, and for the link to the very informative article on radio-surgery. My favorite part of the article was reading about the 94-97% success rates with GK!  I hope to be in that group too someday with you and Robin!

Be well, 
Petrone   

[robinb]

Hi Petrone-

I finished the steroids last Friday. Since then, I have had some mild tinnitus on and off. Its a high frequency ringing that most of the time I just dont notice.

I dont think steroids after GK are standard. They were presribed in my case because I have had positive reactions with prior rounds. There have been about 4-5 rounds prior to GK of a high dose tapering off. Almost every time, I had some hearing improvement. I did not begin having noticable tinnitus until after the holidays.

At any rate, what the professionals refer to as "servicable hearing" preservation is not what I would consider highly usable. Can I comfortably put a phone to my right ear and hear a conversation; can I put an earphone into that ear and hear the lyrics of a song; most of the time the answer is no. But most of the time, the hearing loss is not something I notice. Sometimes after steroid use, it does improve a great deal. However, steroids cannot be prescribed on an ongoing basis due to potential side effects. However, I will continue to get them probably a couple of times a year if I can until there is no improvement while taking them.

My goal in choosing GK was a minimally invasive procedure that would stop the tumor from growing and preserve as much hearing as possible that I had l left, with little down time and side effects. For me, the six and one year MRI's will be the test.

Hope this answers your questions.

[arizonajack]

If I press the pin sites, they are still a little sore.

Can't help yourself, right?

Neither could I.

I'm still poking at them, even two weeks later.

But almost can't feel them anymore.

[robinb]

ok, very funny!

I stopped poking at them as they are not sore anymore!

[MDemisay]

Guys,


The novelty wears off after a while. The tactile memory of having such a heavy implement screwed into your skull lasts and lasts however. Even as it fades from sight!

Mike

[robinb]

A little over two weeks post GK; all is great; have not had any tinnitus for two days!!!

I will check in periodcially to post contunied good outcome, more frequently if anything else to report.

Thanks everyone!

[robinb]

Four weeks since GK; occasional tinnitus (high pitch ringing). Most of the time I dont even notice it.

Other than that, back to normal....

[MDemisay]

Dear Robin,

Please please continue to keep us posted! Following your posts keeps my spirits lifted!

Thanks!

Mike

[dtorres135]

I'm ready to schedule my gamma knife procedure in June.  Nervous but relieved that I made a decision.

[robinb]

Congrats on the hardest part; making the decsion!

Once I made mine, I couldnt wait to get it done. Youre a few months out; likely you will second guess yourself, but dont make yourself nuts over it. I did up until the day I met the docs, thats why I had it done so quickly after I decided. Would have been even sooner if the holidays werent looming and I had to wait for insurance to get worked out before I would finalize travel. Even with doing that, the claims are a mess, so will have to spend hours sorting through that nonsense now.

[lizjohnson11]

Thank you for your information Robin. It is very helpful in making a decision. I has a small stroke on January 6,2013. When doing an MRI to confirm the stroke diagnosis they discovered my AN. My local neurologist scared me when he finally saw me on February 12th. He said I needed to have surgery. He said there was no reason to wait. I said there was a reason. I am a teacher and financially I needed to wait until the summer. He very quickly said no! He got an appointment for me at the University of Washington 3 days later.
At UW I was greatly relieved to hear I could wait until the summer with no problem.
My AN has a cyst. Dr. Rockhill who would do the gamma-knife procedure said the cyst is not a problem but that some doctors will tell you that radiation is not advised when there is a cyst. Sure enough in my next appointment with Dr. Duckert, the ENT surgeon I was told that gamma-knife was not always successful. Dr. Duckert believes I should have surgery. He told me with kind but right now I can't remember the name let alone be able to type it.
Does anyone have experience with gamma-knife when your AN has a cyst?
Humor helps me get through a lot in life. In this case I can't believe my problem (AN) has a problem (cyst)!