Author Topic: Gamma Knife Question  (Read 2773 times)

Lorbis

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Gamma Knife Question
« on: June 10, 2011, 04:58:54 pm »
Is there anyone who has had gamma knife who wishes they had chosen not to? That is, over time, have you had results or side effects which you did not anticipate which made you sorry  you chose GK?

mk

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Re: Gamma Knife Question
« Reply #1 on: June 11, 2011, 02:44:36 pm »
Hi,

OK, I will go first. My story is not the typical success radiation story. When I was diagnosed my AN was already quite big (approaching 3 cm), although at the time of diagnosis I had been told that it was 2.4 cm (after I learned how to read my MRIs I realized that the value had been underestimated). Anyway, at that point in time I was just coming back from maternity leave from my second child. Having two very young children, being just back to work with a very demanding job and not having any help close by from family, that was a really terrible time for me to have surgery. So I opted for the GK, even though I knew that the size of my AN was borderline.
I went through the treatment with no problems and no side effects. I didn't miss a day of work. At 6 and 12 months the tumor showed darkening, but then it started slowly creeping up in size again. After last October's MRI I knew it was time to seek microsurgery. By that time my kids were already quite older, I was much more secure at job and my mother in law had retired and was able to come and help me out. I had the time to consult with many neurosurgeons (I live in a small city, so this involved quite a bit of travelling). I chose one quite far from were I live (5 hour flight), and finally I had surgery 3 years exactly after GK. The surgery went very well and I couldn't have wished for a better outcome.
So to your question: Am I sorry that I chose GK initially? I would answer no. I knew that in my case the chances of success weren't that great, because of the size. But GK did buy me valuable time, making it possible to find a competent team. If I had surgery upon original diagnosis it would probably be at the local facility with who knows what outcome.
I have corresponded with many other forumites who had GK, for ANs of sizes similar to yours (around 1-1.5 cm). All of them had very good outcomes. So I am confident that GK (and CK) are very good treatment choices.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Lorbis

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Re: Gamma Knife Question
« Reply #2 on: June 11, 2011, 04:51:47 pm »
Thanks for your response.  I'm still in the "discovery" phase of all of this.  A doctor told me that a lot of patients who have had gamma knife are wishing they hadn't.  I meet with a gamma knife doctor on Monday, so I'll probably become even more confused.  Then, in July, I'm going to Philadelphia to the other team that was recommended to me to see what they have to say.  Some days I think I'll be doing gamma knife, other days it's surgery.  I wonder when I'll know for sure!!

mk

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Re: Gamma Knife Question
« Reply #3 on: June 12, 2011, 07:32:30 am »
Many doctors are not knowledgeable about stereotactic radiation and are quick to dismiss it. Make sure to consult with specialists doing radiation. Even more ideal would be to find a doctor that does both surgery and radiation and can provide a more unbiased opinion. Make sure also to research GK vs. CK. When choosing surgery or radiation one should be fully aware of the possible side effects. The decision process is one of the most difficult parts of the journey but from what I have seen here people who have made an informed decision rarely regret it.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

AnnR

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Re: Gamma Knife Question
« Reply #4 on: June 15, 2011, 09:34:55 pm »
I had GK April 1st.  Not sorry at all.  At this time, I have had very little to report.  No significant post op symptoms.  I still have a small area of numbness on my scalp on the AN side.  Possibly some increase in tenninitis and some possible decrease in  hearing...It's hard  to say just how much has been effected since I hardly notice it at all.  My experience has been mostly uneventful.  I will have another MRI in August so that may tell us something.  I surely hope that things continue to be "uneventful"  except that I do hope for the AN to stop growing!! 
This forum has been such a help to me especially when I first discovered that I had this AN.  I like most others find that the more we learn about what we fear that the fear lessens.  It has for me.  I want to know everything I can...I don't want any surprises unless they are good ones. AnnR