I have an AVM in my brain the size of a baseball posssibly a little larger on the Right side of my brain, becuase of were it is positioned it has effected the left side of my body now to the point were my face is being effected. My whole left side is smaller then my right.Everone says they can't tell but you can.I also have sezuires and i am awake, eyes fuction but I can not talk. Last night I was admitted in the hospital and they told me if I don't fix it fast I will die. I am scared and don't know what to do. I need help finding a Neurosurgeon that can HELP me. Gamma-knife did nothing.
I’m in California, so my neurosurgeon would be a long way away for you. Dr. Javed Saddiqi at Riverside County Regional Medical Center removed my AVM - smaller than yours about golf ball sized. There are a lot of wonderful caring people on this site, so I’m sure you’ll get other suggestions. I do wish you the best and will keep you in my prayers.
Margaret, It seems our cases maybe very similar. I’m not sure how long ago you had ur gamma, but I wonder if embolization is still an option? From what I have read here, there seem to be wonderful neurosurgeons and avm specialists in the NY, Philly area? Perhaps you can search for Dr. Rosenwasser in the member section, as I know of several patients here that sing his praises! I know it’s a scary time with the noticeble left side weakness, I even a slight facial droop as well. I am in Texas and would recommend my docs in a heartbeat, but I understand travel restrictions. I am now 36 and have lived a relatively ‘normal’ life so far, so you haven’t been given a ‘death sentence’ by any means! Like urs, my avm is rather large and on the right side. I pray that u find the right surgeon to help u and God gives u the strength to endure this! Please keep us posted, u will be in our thoughts and prayers. -GK
I never got to choose my neurosurgeon, but I was lucky to get a great one (Dr. Bizhan Aarabi of U of Md Shock Trauma). What I’ve learned from my ordeal is that you really need to have faith in the medical staff. As much as people complain about our health care system, I wonder what experiences they have. I found that the medical personnel (especially the nurses) are what makes it a great system. Not a day goes by that I don’t remember my trauma and hospital experience, but the medical staff gave me great confidence that I would be OK.
You might want to call Dr. Christapher Ogilvy’s team (neurosurgeons) at Massachusets General Hospital, which is not too that far from where you live. They may either want to see you or tell you who near where you live can help you! Dr. Ogilvy saved my life…I highly recommend him. Hang in there…we will be praying for you!
Oh, I forgot to tell you, Dr. Ogilvy teaches about AVM’s at Harvard and probably can tell you the best place to go once he understands your type of AVM. I also couldn’t talk right before I had a grand mal seizure. It’s very scary…again, hang in there. You can find help!
HI, SAW YOUR POST AND WILL ADD YOU TO MY PRAY LIST, I PRAY THAT YOU FIND THE RIGHT DOC. THAT CAN HELP ,I TOO LIVE IN TEXAS AND WOULD SAY COME HERE BUT I KNOW IT’S TO FAR, BUT DONT GIVE UP GOD BE WITH YOU ON THIS JOURNERY HE WILL LEAD YOU TO THE RIGHT DOCS. GOD BLESS KEEP US POSTED
The first thing is prayer and believing in the Lord. And then the second thing sounds like another Radiation Therapy Treatment. Good Luck on this.
I had three of them the last thirty five years.
And my AVM is finally gone. But I am still dealing with the radiation effects.
I was scared also but you have to deal with it. Now deal with it and get cured so you will the next one added to AVM cured…
All I do Is Pray and have faith I have to it has gotten me through many things I just still need Hi Everyone,
I have an AVM on the right side of my brain a little larger than a baseball, becuase of how big it is it has caused my left side of my body to become very very week. I can’t use my left hand very well sometimes not at all as well as my leg but I can still walk but I fall all the time, I were a leg brace, it sometimes helps. It was never in my face but I had a stroke recently that now caused my face to sometimes droop down. I have to go see a special team of docter’s to look at my entire body to do a surgury that there not even sure they can perform. It was explained to me this they were going to inject a lava type substance on some of the viens and arteries to try a kill some of it to hopefully causeing more blood flow to the left side but they do not know what the out come will be. SCARY!!! Then I have another nuerosurgeon who I have an appiontment with next month I have seen him before back when I was 16 when I first found out I had an AVM. I had Gamma-knife surgery. It did nothing I am curiose to see what else they have to offer me and if they can even help me all becuase gamma-knife did nothing but cause me pain for life in my head. All I care about is getting better for me ,my Fiance’,my family and friends and hopefully make new ones on this wonderful site 8) WoW that was alot. Feel free to talk or ask questions PEACE<3 Margaret 8)
Hi Margaret. Thanks for sharing your story. Welcome to the site. I am sure you will find good information here. We are all here to help each other. If I can do anything at all to help, just say the word! I will certainly start praying for you right away.