Gamma knife or surgery...if you could choose..?

Okay - here is a fun one for everyone out there! I just got back from my post op appt @ Toronto Western following my femoral angiogram two weeks ago. There were three potential methods to deal with my cranial avm - gamma knife, surgery or ‘brain glue’. The brain glue is not an option, based on the location of the avm. So that means I can go with the gamma knife or surgery. The doctor told me to think about it and that the decision was personal and for me to make in consultation with my familly. My immediate thought was - “I’ll ask my buddies online!” :slight_smile: He said the gamma knife procedure can take some time to completely obliterate the avm, and there is a small chance that it may need to be repeated a few years down the road if they don’t hit the right spot, plus the discomfort of the procedure. The surgery is a 100% fix for the avm, and mine is in an accessible location, but of course, this method brings the inherent risks of surgery with it. With all of your collective experiences…I am interested in what each of you think. Thanks for your input… /pat

You want to fix your AVM 100% percent don’t you? Then go for the surgery. None of the methods are without any risk, and the treatment with gamma knife or embolization means the AVM can return, so why not go for the sure thing? That’s what I would do. /I had embolization-brain glue- but this was the only option for me/

I had AVM surgery in November 2007 for a large AVM on my ear and scalp after a 5 hour embolization . I just had a CTA and the AVM is back all around my ear and in front of my ear in the parotid gland so I don’t think AVM surgery is 100% guarantee that the AVM will be gone forever. If I could have Gamma knife (which I can’t because it’s not in my brain) I would because it can be done as an out-patient procedure, no GA. Kimberly

Thanks for your thoughts, Alex & Kimberley…I have had some time to stew over this now and really, time does help, doesn’t it? The only thing I know FOR SURE is that each person and each individual case is different. I am feeling like the surgery is the right choice for me, for a whole handful of reasons. I’m scared about the recovery, but feel like at least I’ll be able to get on with my life following it. /pat

Hello Pat, I have a husband who had Gammaknife 2 years ago because that was the only hope offered. As far as the procedure went, my husband didn’t mind the frame at all. We arrived at the hospital 6:30am and another couple were there with us to have Gammaknife also. The men went on in and us ladies went off to have coffee while waiting for the frame to be attached. Upon re-entering his room, both men were sitting up in their bed smiling at us with the frames attached! It took me back to see this but I think they got a secret chuckle at our reaction. The rest was one procedure after another until it came time to take the frame off. This was the worst pain he has ever had but his nurse was quick to administer medication. By 7:30 that evening, we were sitting back in our hotel room watching TV. The two years following Gammaknife has seen subtle changes that seem to dicipate afte a few weeks. We were told that with this procedure, the changes are so slow that the brain has time to heal as changes occur. Unfortunatley his procedure didn’t work due to the complexity of the AVM but we went into it knowing it was a long shot. He did say he WILL do it all over again if offered. Toronto Western is a great place with patient, caring staff. I wish you peace of mind and success with your surgery.

thanks so much for that info, Elizabeth. It certainly sounds like the GK wasn’t ‘too’ terrible of an experience for you and your husband. I guess it all depends on the details of the individual avm. Mine is in an easily accessible (surgically) spot. Had your husband ever suffered a bleed? I’m so glad he is doing well… /pat

Elizabeth Clarke said:

Hello Pat, I have a husband who had Gammaknife 2 years ago because that was the only hope offered. As far as the procedure went, my husband didn’t mind the frame at all. We arrived at the hospital 6:30am and another couple were there with us to have Gammaknife also. The men went on in and us ladies went off to have coffee while waiting for the frame to be attached. Upon re-entering his room, both men were sitting up in their bed smiling at us with the frames attached! It took me back to see this but I think they got a secret chuckle at our reaction. The rest was one procedure after another until it came time to take the frame off. This was the worst pain he has ever had but his nurse was quick to administer medication. By 7:30 that evening, we were sitting back in our hotel room watching TV. The two years following Gammaknife has seen subtle changes that seem to dicipate afte a few weeks. We were told that with this procedure, the changes are so slow that the brain has time to heal as changes occur. Unfortunatley his procedure didn’t work due to the complexity of the AVM but we went into it knowing it was a long shot. He did say he WILL do it all over again if offered. Toronto Western is a great place with patient, caring staff. I wish you peace of mind and success with your surgery.

HI Pat,
It’s pretty interesting to hear the opinions of different Doctors throught the world. My Neuro’s recommended embolization (that’s the glue) first and then radiosurgery. They told me that my avm was in a location that was too risky for surgery and actually said most Doctors are not doing surgery these days unless it’s an emergency situation. I had the two embo’s, one in Dec 08 and one in Jan 08 and I just had my radiation on Sept 17th. It will take three years for the AVM to go away but I’m feeling pretty positive about the whole thing. I have faith that the Docs know what’s best for me. It is truly a personal decision like your Doctor said. I’m happy that my docs chose the least invasive way to take care of my avm but in my case supposedly surgery really wasn’t an option. I had LINAC radio surgery so similar to Gamma but not exactly the same.
Best wishes to you!

Rachel

Hi Rachel…the glue wouldn’t work for mine - location and position. The only options are GK or surgery. The hospital that I am going to specializes in neuroscience, and they have a whole clinic with 8 neuroscience surgery specialists COMPLETELY dedicated to AVM’s…amazing. Truly world class - it helps so much to feel confident in your caregivers. Because I am Canadian, all of my costs for this are covered under our national health care system. I hope and pray that the US gets a health care system up and running soon! Thanks for your thoughts…are you feeling 100% yet? I know you had your procedure recenty too… /pat

Rachel said:

HI Pat,
It’s pretty interesting to hear the opinions of different Doctors throught the world. My Neuro’s recommended embolization (that’s the glue) first and then radiosurgery. They told me that my avm was in a location that was too risky for surgery and actually said most Doctors are not doing surgery these days unless it’s an emergency situation. I had the two embo’s, one in Dec 08 and one in Jan 08 and I just had my radiation on Sept 17th. It will take three years for the AVM to go away but I’m feeling pretty positive about the whole thing. I have faith that the Docs know what’s best for me. It is truly a personal decision like your Doctor said. I’m happy that my docs chose the least invasive way to take care of my avm but in my case supposedly surgery really wasn’t an option. I had LINAC radio surgery so similar to Gamma but not exactly the same.
Best wishes to you!

Rachel

HI Patricia,

Yes the whole healthcare system is in shambles here in the U.S. but I also heard that people in Canada come to the US for healthcare because they can’t get in with Docs there and that are long waits to be seen. That would scare me! My health insurance is great so right now I don’t worry too much but I do wonder what’s going to happen in the future? That’s a whole other topic though. LOL
As far as the avm goes it would have been nice to just get the thing removed but brain surgery does scare me a lot. I trust my docs saying mine is not a good candidate for surgery and at least I know they are not “surgery” happy. I am getting the best treatment. I live here in Nashville , TN where there are also incredible Doctors.
Best wishes to you, keep us posted!!
Rachel

Patricia Duguay said:

Hi Rachel…the glue wouldn’t work for mine - location and position. The only options are GK or surgery. The hospital that I am going to specializes in neuroscience, and they have a whole clinic with 8 neuroscience surgery specialists COMPLETELY dedicated to AVM’s…amazing. Truly world class - it helps so much to feel confident in your caregivers. Because I am Canadian, all of my costs for this are covered under our national health care system. I hope and pray that the US gets a health care system up and running soon! Thanks for your thoughts…are you feeling 100% yet? I know you had your procedure recenty too… /pat

Rachel said:
HI Pat,
It’s pretty interesting to hear the opinions of different Doctors throught the world. My Neuro’s recommended embolization (that’s the glue) first and then radiosurgery. They told me that my avm was in a location that was too risky for surgery and actually said most Doctors are not doing surgery these days unless it’s an emergency situation. I had the two embo’s, one in Dec 08 and one in Jan 08 and I just had my radiation on Sept 17th. It will take three years for the AVM to go away but I’m feeling pretty positive about the whole thing. I have faith that the Docs know what’s best for me. It is truly a personal decision like your Doctor said. I’m happy that my docs chose the least invasive way to take care of my avm but in my case supposedly surgery really wasn’t an option. I had LINAC radio surgery so similar to Gamma but not exactly the same.
Best wishes to you!

Rachel

pat,
this is a very interesting topic,
in the begining i was giving no choice i was deemed inoperable and sent home…being told my avm was ready to rupture and nothing could be done…i serached and searched until finally my 11th opinion agreed to preform embolisation and and a very risky brain surgery…and as hard as the road of recovery has been i can say i will be enternally grateful to Prof.Morgan for saving my life…when 10 other surgeons said it could not be done…when making the decision to go through with the surgery i told myself no matter the outcome i can never have regets and i think thats the important factor in making the right decision …make sure you make it knowing you will have no regets …no matter what decision you make…make the decision with your heart…you will know which is right for you …please let us know what you choose best of luck …thinking of you xxx

Femoral is a big artery. However, with that being said if they said to you that surgery would completely get rid of the AVM, go for it. I’d kill to be symptom free.

My husband and i are also trying to decide wether or not to have the surgery. Its a huge decision. Having no A.v.M to worry about would be the best feeling ever. Recovery may be difficult but at least its “recovery”. U may have the surgery and be perfect! Go for it, i now just have to convince my husband :slight_smile: good luck!

Yea, thats the thing, isn’t it? I have spent so many years living with the symptoms, and I basically handed over my life this past winter to have the embo’s done on my lung avm’s. After reading all these amazing stories on this site, I can’t help but feel lucky to have a clear cut (pardon the pun) option. The best part is that it will be FIXED AND FINISHED! Let’s hope… :slight_smile:

Melinda said:

Femoral is a big artery. However, with that being said if they said to you that surgery would completely get rid of the AVM, go for it. I’d kill to be symptom free.

Hi Ashley…it is a big decision. I’m 45 and have two daughters in their early 20’s. They symptoms have been pretty significant for me over the years, so I am looking forward to the idea of being rid of it. It can take over your life - the worry and anxiety. where is your hubby’s avm? Is it operable?

Ashley Callahan said:

My husband and i are also trying to decide wether or not to have the surgery. Its a huge decision. Having no A.v.M to worry about would be the best feeling ever. Recovery may be difficult but at least its “recovery”. U may have the surgery and be perfect! Go for it, i now just have to convince my husband :slight_smile: good luck!

Shawns avm is in the front left lobe of the brain, it is operable and we were set to have it done and he cancelled saying he needs time.

Patricia Duguay said:

Hi Ashley…it is a big decision. I’m 45 and have two daughters in their early 20’s. They symptoms have been pretty significant for me over the years, so I am looking forward to the idea of being rid of it. It can take over your life - the worry and anxiety. where is your hubby’s avm? Is it operable?

Ashley Callahan said:
My husband and i are also trying to decide wether or not to have the surgery. Its a huge decision. Having no A.v.M to worry about would be the best feeling ever. Recovery may be difficult but at least its “recovery”. U may have the surgery and be perfect! Go for it, i now just have to convince my husband :slight_smile: good luck!

It is a big deal…I have to get my work organized so I can take an extended leave and know that everything is ‘in order’, my family and our holidays will be affected, and - I am scared. Everyone has their own individual way of coping…he is lucky to have your love and support to help him through. I am standing tall in the knowledge that although this is pretty scary, it is something that they can actually ‘fix’…there aren’t many afflictions that you can say that about. When I think of it that way, it helps me to feel ‘braver’ (if that is even a word). You are both in my prayers.

Ashley Callahan said:

Shawns avm is in the front left lobe of the brain, it is operable and we were set to have it done and he cancelled saying he needs time.

Patricia Duguay said:
Hi Ashley…it is a big decision. I’m 45 and have two daughters in their early 20’s. They symptoms have been pretty significant for me over the years, so I am looking forward to the idea of being rid of it. It can take over your life - the worry and anxiety. where is your hubby’s avm? Is it operable?

Ashley Callahan said:
My husband and i are also trying to decide wether or not to have the surgery. Its a huge decision. Having no A.v.M to worry about would be the best feeling ever. Recovery may be difficult but at least its “recovery”. U may have the surgery and be perfect! Go for it, i now just have to convince my husband :slight_smile: good luck!