My son Joseph had a hemmorhage from a very large avm when he was six years old. He had a craniotomy to remove the AVM in 2005. Joseph now 11 years old, has two small avm's. They are likely to be residuals from the initial avm that was removed in 2005. The neurosurgeon recommended the gamma knife procedure; open surgery would require two seperate surgeries.
My concern with the gamma, is the long term affects of radiation.
I plan on doing as much research as possible. We want to be confident that we are making the best choice. We want to do this maybe over the summer.
Hi Connie. I think it's very wise of you to do as much research as you can. I did have GK and I can tell you , it takes an average of 2 to 3 years for it to work, and the radiation stays active in the body for 3 years. The procedure for the GK isn't bad at all.
As far as side effects from it, that's a tough one for me to answer. Of all of the research I did on it, I couldn't find any info. about the possible side effects. Usually what I found was: "Very little side effects occur" and "Little is known about the long term effects of GK. Since it hasn't been around long enough for long term studies." (GK has only been around for about 25 yrs.) It's my understanding that GK is used when all other options are not possible. When I had mine done, the possible side effects were not explained to me very well. I would suggest, ask the doctor to explain to you all that he knows about the possible side effects. Oh..also, it depends on the location of the avm of what - if any, the side effects might be.
Thank you for your reply. Yes I do need to find out the locations of these AVM's. All I know is one is deep.
GK sounds to simple for me. I think of the 'old time' radiation that was always associated with cancer (treating it, and causing it). My suspiscious mind makes me wonder if gk is just more cost effective.
I'm not thrilled at all with the thought of open surgery again.. I'm just not sold on gk yet. Like you say you have to wait 2+ years. All this while the radiation is actively doing its thing to everything in its path. Then there is a possibility that it does not work. Then what?
I shouldn't be so negative, but I want Joseph to be able to put this behind him. I'm trying to see the big picture, with a long healthy future.
I'm going to meet with a local neurosurgeon, new to the area. There was an article in the newspaper about him recently. He treated a local boy that suffered a stroke from an AVM.
Thanks again .
Ben Morrell said:
Hi Connie. I think it's very wise of you to do as much research as you can. I did have GK and I can tell you , it takes an average of 2 to 3 years for it to work, and the radiation stays active in the body for 3 years. The procedure for the GK isn't bad at all.
As far as side effects from it, that's a tough one for me to answer. Of all of the research I did on it, I couldn't find any info. about the possible side effects. Usually what I found was: "Very little side effects occur" and "Little is known about the long term effects of GK. Since it hasn't been around long enough for long term studies." (GK has only been around for about 25 yrs.) It's my understanding that GK is used when all other options are not possible. When I had mine done, the possible side effects were not explained to me very well. I would suggest, ask the doctor to explain to you all that he knows about the possible side effects. Oh..also, it depends on the location of the avm of what - if any, the side effects might be.
My son had a craniotomy with removal of an AVM when he was 8 -2 yrs later he had a residual AVM very small approx-3mm
we seeked out multiple opinions and got very mixed responses on the plan. We ultimately picked embolisation by Dr. Pierre Gobin CP-weill Cornell in NYC. This was done Dec12th, and he is presently cured no need for repeat angio until a year. The AVM is gone we are so happy that we researched through this site and that we went to NY. Friend me if you would like to read my son's history. If I could be of any help to you let me know. Keeping you and your son in my thoughts.
Im sure with lots of research you will make the right choice. I would second guess that too. I will pray that you find the research you need soon and that you and your son will make it through whatever you choose.
Connie I just want to say hi and give my support as I have a son who is 6 now and would be devastated if he was diagnosed with an avm. I am the one that has the avm. Mine was diagnosed in October 08. I had two embolizations, one in december 08 and one in January 09. I had radiation in September 09. I had my one year post radiation cat scan this past fall and was happy to hear my avm is already shrinking :).
All I know is my avm was in a risky spot for surgery and my Neurosurgeon chose to go with Lineac stereotactic radiation. I have been lucky, no side effects.
Blessings,
Rachel
Connie, I just wanted to say good luck. My daughter was 6 years old when her first AVM ruptured and required emergency craniotomy. We don't have any GK experience. But my daughter has had 13 catscans and numerous other radiological tests, so her medical team is now very cautious and a bit worried about all the radiation. If your team says GK is best for your son, I hope you trust them enough to let them do what they think is best for your son. If not, then get a second or even third opinion until you're as comfortable as you can be with treating an AVM in the brain of a 6-year-old.
Good luck to you as well, Connie. I know how hard it is making these decisions as the parent of a small child. To see your little one in a hospital bed is a painful thing for a parent.
Connie, I just wanted to say good luck. My daughter was 6 years old when her first AVM ruptured and required emergency craniotomy. We don't have any GK experience. But my daughter has had 13 catscans and numerous other radiological tests, so her medical team is now very cautious and a bit worried about all the radiation. If your team says GK is best for your son, I hope you trust them enough to let them do what they think is best for your son. If not, then get a second or even third opinion until you're as comfortable as you can be with treating an AVM in the brain of a 6-year-old.
Good luck to you as well, Connie. I know how hard it is making these decisions as the parent of a small child. To see your little one in a hospital bed is a painful thing for a parent.
Thank you so much for your well wishes. I am taking Joseph for a 2nd opinion this week and have another appointment scheduled in 2 weeks for a 3rd. You are right.. I want to be comfortable and confident that I made the right choice. Actually I think I will only feel comfortable when this is one day, behind us, and Joseph is 'AVM Free'.
How old is your daughter and how is she doing now? Thanks again, connie guarnieri said:
Tina White said:
Connie, I just wanted to say good luck. My daughter was 6 years old when her first AVM ruptured and required emergency craniotomy. We don't have any GK experience. But my daughter has had 13 catscans and numerous other radiological tests, so her medical team is now very cautious and a bit worried about all the radiation. If your team says GK is best for your son, I hope you trust them enough to let them do what they think is best for your son. If not, then get a second or even third opinion until you're as comfortable as you can be with treating an AVM in the brain of a 6-year-old.
Good luck to you as well, Connie. I know how hard it is making these decisions as the parent of a small child. To see your little one in a hospital bed is a painful thing for a parent.
Connie I just want to say hi and give my support as I have a son who is 6 now and would be devastated if he was diagnosed with an avm. I am the one that has the avm. Mine was diagnosed in October 08. I had two embolizations, one in december 08 and one in January 09. I had radiation in September 09. I had my one year post radiation cat scan this past fall and was happy to hear my avm is already shrinking :). All I know is my avm was in a risky spot for surgery and my Neurosurgeon chose to go with Lineac stereotactic radiation. I have been lucky, no side effects. Blessings, Rachel
I hope you are doing well. Did you have this Lineac Radation opposed to GK because of the location or the size of the AVM. It has been about 18 months since your treatment.. When will the know that the treatment was a success?
Stay positive! My best to you Rachel:)
Rachel said:
Connie I just want to say hi and give my support as I have a son who is 6 now and would be devastated if he was diagnosed with an avm. I am the one that has the avm. Mine was diagnosed in October 08. I had two embolizations, one in december 08 and one in January 09. I had radiation in September 09. I had my one year post radiation cat scan this past fall and was happy to hear my avm is already shrinking :). All I know is my avm was in a risky spot for surgery and my Neurosurgeon chose to go with Lineac stereotactic radiation. I have been lucky, no side effects. Blessings, Rachel
Im sure with lots of research you will make the right choice. I would second guess that too. I will pray that you find the research you need soon and that you and your son will make it through whatever you choose.
Thank you Diane for your help. I am not great a navigating around this site yet, so hopefully I will not lose you! I think Joseph’s avm’s are, maybe too big for embolization (they are under 2cm). Not sure, so I will put it on my ‘questions’ list. Thanks again. Diane -Paul Faherty Mom said:
My son had a craniotomy with removal of an AVM when he was 8 -2 yrs later he had a residual AVM very small approx-3mm
we seeked out multiple opinions and got very mixed responses on the plan. We ultimately picked embolisation by Dr. Pierre Gobin CP-weill Cornell in NYC. This was done Dec12th, and he is presently cured no need for repeat angio until a year. The AVM is gone we are so happy that we researched through this site and that we went to NY. Friend me if you would like to read my son's history. If I could be of any help to you let me know. Keeping you and your son in my thoughts.