I am fairly new to all this. My Daughter who is 11 had a large AVM burst in her cerebellum next to the brain stem and when the doctors performed the second angio there were no remarkable ares to embollize.I am told surgery is risky; there is a 20% chance she can expire ao the table. The next possibility is proton radiation. Is this the same thing as steriotactic radiosurgery ? If not, can some one explain the difference please?
I am meeting tomorrow with the proton team at Mass. General Hospital...the lead surgeon is out of Harvard Medical School. Does anyone have any experience with this, any questions other than the obvious one's I should be asking?
My son has a large avm in the cerebellum that I think is close to the brainstem but operable. At least I think so, we are waiting on a 2nd opinion from Spetzler in Arizona. We also looked at boston because we read and researched it, all pointed to top notch. I can only tell you it is so tough as a parent, my only recommendation is to take a breathe if you can and let each piece of information soak in before making a decision. We were close to surgery after 4 embolizations and really had a wake up call when a surgeon told us about some of the things we could expect after surgery and during. Thats when we finally realized we needed to sloww down and get additional opinions. We have been blessed that our son has not had a bleed yet. We will kepp your daughter in our prayers.
No hasty decisions here. I'll be looking to get a 2nd,3rd,and 4th opinion. I'm looking at Fordham and Presbeterian in New York. I'll keep your Son in my prayers.
Tim Strong said:
Marc,
My son has a large avm in the cerebellum that I think is close to the brainstem but operable. At least I think so, we are waiting on a 2nd opinion from Spetzler in Arizona. We also looked at boston because we read and researched it, all pointed to top notch. I can only tell you it is so tough as a parent, my only recommendation is to take a breathe if you can and let each piece of information soak in before making a decision. We were close to surgery after 4 embolizations and really had a wake up call when a surgeon told us about some of the things we could expect after surgery and during. Thats when we finally realized we needed to sloww down and get additional opinions. We have been blessed that our son has not had a bleed yet. We will kepp your daughter in our prayers.
If you're looking at NYP in New York, I'd recommend the neurosurgery team at Cornell-NYP. Dr. Stieg is the chief of neurosurgery there. My adult son (diagnosed at age 15yr.) is presently being treated there. The team is great! My son has a large AVM near the basal ganglia which has bleed several times and is inoperable. Dr. Patsalides at Cornell is now trying to embolize parts of it to get it small enough for radiation. It was very risky to try this, but my son decided to go ahead. I am a nurse and my son has been seen at other major medical centers. I can't say enough good about Dr. Stieg, Dr. Patsalides, and Dr. Pannulo at Cornell! They are top neurosurgeons, but also very compassionate.
Hi Marc…I also went to Mass General and was a patient of Dr. Chapman’s. I had my Proton Beam Radiation in May of 2007. Unfortunately, I had a massive brain bleed 6 months after I had the radiation…was the radiation the reason?? I still wonder. However, my AVM went away 2 years after the radiation. If you have any other questions, please don’t hesitate to ask! By the way…sorry it took me so long to answer…I didn’t find your Discussion until today.
Hi Marc…No they couldn’t do embollized because my AVM was too fair back in my brain…The only thing they could do was PBR. Have you decided what Doctor to treat your child or what treatment they offer you?
Still speaking with 4 leading nuero’s around the country…Stanford, UCLA, Columbia Pres, Mass General. Looks like embollization first, then PBR, radioknife,etc. i want to gather more info and speak with all of them again before i decide.
Great Job, Dad! I was working so hard at my job that I only went with the second opinion, which was Mass General…Have you looked at Johns Hopkins as well? I think JH is number 1 on the 2011 list of neurosurgins and Mass General is number 2. I would really like to know what you chose…In the meantime…Keep the Faith! and remember, we only want the BEST for our kids!
Hi! I just wanted to say good luck with your choices and her outcome, it is good you are deciding carefully. I’ll share my experience, hopefully it helps. Had an avm 3cm, too big to operate on first, no bleed. Decided that Stanford and Dr. Steinberg was the place to do treatment. I have seen their whole team, they are all Excellent, including Dr. Chang on your list. They wanted me to do stereotatic, then embolize, then surgery.The embolizing was done later b/c they had hopes the radiation would shrink, then there would be less to do. After doing research, I opted for proton at Loma Linda, Ca. (It was the closest proton hosp. to my house). Then I had everything else at Stanford, because 11 years ago Stanford didn’t have proton beam. With stereotatic, it affects the whole brain and proton zeros in on the “tumor” area. I heard proton was safer, b/c you are not doing the whole head. I needed a high dose, which led to necrosis around the area (almost died but emergency surgery by Dr. Steinberg’s team saved me) The necrosis showed around 1 year after radiation, 4 months later I went to a coma state, so they operated. They only dealt with the necrotic tissue when they went in, they needed to map out the rest. Then I did 3 embolizations, then 1 more surgery and it’s gone. The second time they used a cooling blanket which drastically helped my recovery. I wish you the best with your decisions. I highly recommend Stanford. Best of luck to your sweet daughter, my son is 10, hang in there!