Oh my yesturday Johnathan cried after seeing his neurologist

We went to see the nuerologist and he was against this embolization and any intervention surgery because since john lived with it and it never bled and that he should keep on living and do what you always been doing?. He did say to him that this was major MAJOR craniotomy surger and having high risk of dying or paralysis or neurological problems. He told john it was up to him to make that decision to get operated and that its not the me or surgeons to make that decisions and that you should make that decision. We left the doctors office and John frowned and cried when he couldnt hold it any longer. I told him sorry that the doctor scared him . I said you need to stay strong and that I was there for him.
I justed want to know if you can live with embolization with no re- growth or does ot regrow?
Anyone who had craniotomy surgery???

no treatment but am in processing of researching CYBERKNIFE. There are many centres now in the United States that offer this treatment. I am going to ask my neurosurgeon about it in february at my checkup,. I too was told to leave and just monitor as i had no bleed etc just a small focal seizure in july 2007. since going on kappra, no seizures and no side effects. it is a hard decision for your son to have to make so young. please read into cyberknife and see what you think. margy from canada.

i am so sorry that your son has to go through this. When my AVM was found, I was told that I should just leave it but 2 months later it bled…I was planning on removing it and just got my dates! I will get an embolization then the craniotomy the next day. I don’t really know what to tell you; it is a tough decision and my prayers are with your son and family.

i had many different opinions on my avm the majority saying to leave it…but i could never have children…and one telling me that my avm was bound to bleed sooner than later in my life due to the wear and tear…as i had several anurysms…caused by the avm over the years…due to the extra pressure…and if i was to have a bleed the effects would have been devestating…most likly death…after taking upon board all opinions…i decided to go ahead…i am now on the hard long road of recovery…but do believe i did the right thing…it hasn’t been easy …but i have learnt to walk again and continue to work towards regaining use of my left hand and arm…all the pro’s and cons…along with possibilities of outcomes by surgery and if it is left…must be disscussed with your son…a hard life lesson for such a young person…have you sought opinions from more than one neuro?i think that other opinions are important it helps in making such an important decision…the biggest decision your son will ever make in his lifetime…i will be praying for you all xxx

Thanks for all the responses it helps us alot. I havent looked any further i do have one of the best nuero surgeons and he did say well now that embos are done its time for the craniotomy im just frieghten that he may not wake up or something im so scared.


I feel so awful for you. I can’t express it, actually. You’re where we were such a short time ago. I know that everyone has different experiences and opinions, but I’ll tell you our story. When Danielle had her bleed, we were fortunate in many respects. We were close to the hospital and one of the best neuros in the country attended her. Once Dani regained consciousness he talked to us about her treatment. He did not give us options. He told us that the chance for rebleed was 2% per year. Since she was only 9 years old, there was a 18% chance that she would have another bleed before graduating high school. Having seen her on the brink of death, we knew the risk was unacceptable. But it was never discussed. The neuro told us the risk of rebleed and that he would do the surgery as soon as the pressure was relieved from her brain. He told us he would do an angio and attempt to put coils in and do the craniotomy a couple days later. It turned out that he couldn’t implant the coils, but the news from the angio was good and craniotomy was successful. We are 7 months post surgery and Dani is almost fully recovered. She has some vision problems, but that is so minor. I knew that the surgery was the right thing. I knew that I couldn’t live or let Dani live a normal life knowing that monster was in her head. Parents have to make hard choices. All you can do is make the best choice. I can’t tell you how overjoyed I was when Dani woke up from her craniotomy. She looked up at my dad, who had flown in from the coast and arrived during the surgery, and she said, “Hi, Papa.”