Surgery or Wait and See

Replies to This Discussion

Permalink Reply by Trish on June 2, 2009 at 2:05pm

This is a very difficult decision to make, I'm sure. I'm actually glad I didn't have to make it as I had a major bleed and the decision was therefore taken from me. I guess I would suggest that you first make absolutely certain you feel confident and comfortable with this Dr. I know for my husband that was key. Also, it couldn't hurt to get another opinion or even several others. Maybe you would find a doctor that makes you feel like he absolutely can treat your son with the best possible outcome. Again, I don't envy your or your son's decision, but I do wish you the best of luck with whatever that decision is.

▶ Reply to This

Permalink Reply by avmgirl on June 2, 2009 at 2:44pm

This situation sounds familiar. See my story. However, the headaches are something I haven't experienced and sound really rough. Just take your time and don't rush in your decision process. Also, you might want to check out my posting in the forum section on unruptured AVMs. Just some more data for Kyle and you to consider on this crazy journey.

▶ Reply to This

Permalink Reply by Alicia on June 3, 2009 at 4:22am

trish,
i know exactaly,
what Kyle and your family are going through at the moment....when i was ist diagnoised with my avm i was told by several surgeons it was inoperable...my avm was syptomatic and causing several central nervous system problems at the time..i finally found a surgeon who would take the chance and preform the so called impossible surgery...the road of recovery has been long and hard and i still have along way too go...but i know if i didnt have the surgery i wouldnt be here today....if you have any questions or there are any other way i could help please dont hesitate to drop me a line...i am thinking of you guys...you and Kyle are in my prayers...stay strong and keep positive...and its most important to have no regrets no matter what you choose...best wishes ...please let us know what you guys decide xxxxx

▶ Reply to This

Permalink Reply by Jenny on June 3, 2009 at 8:38am

My AVM was a Grade 3, Deep and in a non-eloquent area. It was diffuse as well. I had not had a hemmorage or seizure. I had an opinion from Dr. Spetzler. Reasonable was stated in each sentance. I asked another neurosurgeon what 'reasonable' means to them. He just smiled. I assume that excludes them from any liablility incurred from the path that the patient has chosen. Anyway, I had surgery with embolizations before hand. I could have chosen radiosurgery or nothing. It was a tough choice.

I will pray for Kyle and that he has a positive outcome!

Jenny

▶ Reply to This

Permalink Reply by Pattie on June 10, 2009 at 9:00pm

Hi Kyle welcome to the group. I have been away from the support group for awhile my Husband and I have been taking our 21 year old daugther back and forth to the Cleveland Clinic for her consults She will undergo the Gamma Knife in a few weeks to help remove the rest of her Avm residual.She did not have the difficult decision to make that you have she had a major bleed while she was attending the Motley Crue concert at Blossom she was 20 at the time. She had to have a cranitomey and they had to remove part of her cereblum on her right side we were told later the part that was removed control all her motor skills.It will be a year come August 20,2009 and she is now able to walk with a walker and her speech is getting better she has limited use of her right had but it to is getting better. I know surgery sounds scarry but if it could help you prevent what my daugther had to go through then it is something to think about. It is going to be a hard decision to make but what ever you decided my prayers are with you and your family

▶ Reply to This

Permalink Reply by jessica on June 10, 2009 at 11:15pm

Is radiotherapy an option?

▶ Reply to This

Permalink Reply by Bonnie Kanaski (McKenzie's mom) on July 2, 2009 at 9:18am

Our daughter's avm is inoperable at this time. The risk of surgery was way higher then a bleed. It sounds like your odds are pretty good but when you're a parent you want to hear 100% don't you? That 1 in 10 just sounds unacceptable when you're a parent. Our neurosugeon is amazing. He didn't use words like "reasonable" I asked what he would do if it were his child and he answered, that says a lot to me. He also said that the advances in interventional radiology are advancing so fast that he expects to see better options for avm treatments in just a couple of years. We have no choice, we have to wait. Our heart goes out to your son, just make sure he understands all of the pros and cons of surgery before deciding. His heart will guide him in the right direction.

▶ Reply to This

Permalink Reply by Leeanne Newby on July 4, 2009 at 3:40pm

Hello Trish,
I can empathize with your son and the difficulty of the decision. I just found out that I have an AVM (unruptured) in my left parietal lobe. I am also struggling with a decision to do brain surgery with a 10% risk to my life, speech and mobility or gamma knife with the uncertainties of long term radiation.
Tell your son to not rush his decision, this is a process that requires much thought and consideration.
I think I am going to do the gamma knife in the Fall but the anxiety of the time lag before obliteration is going to be considerable. I have young, dependent children who I need to be around and capable for which is why the brain surgery with a long, hospital stay and therapy is not as attractive. But the radiation and cell necrosis is frightening too.
My best wishes and prayers,
Leeanne

▶ Reply to This

Permalink Reply by Leeanne Newby on July 4, 2009 at 3:41pm

Leeanne Newby said:

Hello Trish,
I can empathize with your son and the difficulty of the decision. I just found out that I have an AVM (unruptured) in my left parietal lobe. I am also struggling with a decision to do brain surgery with a 10% risk to my life, speech and mobility or gamma knife with the uncertainties of long term radiation.
Tell your son to not rush his decision, this is a process that requires much thought and consideration.
I think I am going to do the gamma knife in the Fall but the anxiety of the time lag before obliteration is going to be considerable. I have young, dependent children who I need to be around and capable for which is why the brain surgery with a long, hospital stay and therapy is not as attractive. But the radiation and cell necrosis is frightening too.
My best wishes and prayers,
Leeanne

▶ Reply to This

▶ Reply to This