Surgery or Wait and See

OK now what? Kyle (19 yrs) saw Dr. Spetzler a couple of weeks ago. The doctor said that surgery is a “reasonable” option. The AVM is a grade 3-4, diffuse and in an eloquent area so it is also “reasonable” to just monitor it for now. Kyle has had no bleed but has had 3 grand mal seizures in the last 7 months. There is a one in ten chance of serious complications. We told Kyle we would support what ever decission he made and he is seriously considering the surgery but is pretty scared. I value your opinions and am wondering what you would choose.

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.

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.

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

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

Is radiotherapy an option?

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

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

Hello Trish. My 9 year old daghter has a diffuse AVM in the eloquent are of the brain. I am doing my best t research as much as possible but there are not much hopeful information on the internet about diffuse AVM. Can I ask you how your on is doing?

I sent an angiogram to Dr. Spetzler and waiting fpor his review. My daughter primary neurosurgeon is Dr. Martin at UCLA. The radiologist at UCLA told me that it is inoperble.

Leeanne Newby said:

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

What a choice for a 19 year old to have to make. I personally choice to go gun ho about my AVM and have surgery only 2 months after the discovery of it. I am also 30 and have 2 children of my own so it was a no brainier for me. I think one of the most important thing in making my decision was how confident I was in the ability of the surgeons to get all of it. I am super happy I got the surgery. I have a small, but insignificant peripheral vision defect, but my eye doctor said if I was going to have any sort of visual defect this was the best place to have it (upper right of my right eye no side deficiency). Being scared is the worst part. I was scared, but the most fear came on the day of the surgery. I remember going into the surgical room and making sure everyone was well rested and in a good confident mood and each and everyone of them assured me they were 100% there and would work to the best of their ability to keep me alive and to get all of the AVM which they did!

I didn’t have to make the decision because of a major bleed, they had to operate. If it was my child, I would go with the surgery. You would not want to wait and see and then there be permanent damage. You would regret the decision for life and unfortunately could not change it. Once the surgery is done, its gone and u dont have to worry about it. I would go with the surgery. Good Luck! I hope he makes the best decision for him.

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I got the same message from Spetzler. Also had grade 3-4 AVM but not symptoms. I opted for treatment (embo + surgery). Was scared too but decision was fact-based

  • do nothing/observe: 4% risk of bleed per year and bleed w high risk of complications (and who knows where you are if a bleed happens, you might be far away from a good surgeon)
  • treament:5-10% risk of death or serious complication.

So trade-off was easy but yet scary to make…

Good luck w your choice - it is not fun to make but necessary

A.

Hello Andreas. My 9 year old daughter was diagnosed with diffuse AVM in the eloquent area by her Radiologist. My follow up meeting is not until 5/17 though with Dr. Martin, but I have sent the angiogram to Dr. Spetzler for his review. I am glad I saw your message as it tell me that there is some hope. My own research on the interent reviewing medical journals have not been too promising with conclusions ending with “inoperable”. I hope you are doing well. Thanks.

Andreas Juul Sorensen said:

I got the same message from Spetzler. Also had grade 3-4 AVM but not symptoms. I opted for treatment (embo + surgery). Was scared too but decision was fact-based
- do nothing/observe: 4% risk of bleed per year and bleed w high risk of complications (and who knows where you are if a bleed happens, you might be far away from a good surgeon)
- treament:5-10% risk of death or serious complication.

So trade-off was easy but yet scary to make…

Good luck w your choice - it is not fun to make but necessary

A.