I’m so glad you got in touch with the Doctors at Hopkins. Louisa recently posted the link to the best hospitals and Doctors in the US under the forum titled, “AVM Diagmosed in the USA.” Johns Hopkins is listed as #1.
hi there i have a left frontal avm and to tricky to operate on have had radio done on it three years ago now it has shrunk 90something percent. it still is a pain to deal with ive had a slight stroke and right leg and right arm very weak. am here to answer any questions . Janine
Hi Janine, I too have my avm in my left frontal lobe. I can't remember how many radiation sessions I had after they amoblized the avm but it was done within a week...maybe I went in for 3 ? It was back in 1991 ...I guess I could go through my history of medical records here in this enormous pile I have. This was done at the University of Penn hospital, at that time they had this Dr. who was afraid to operate on the veins..I should've kept that xray but no one told me I could keep it and I didn;'t see the importance in it but they did say it was huge,like a size of your fist all tangled together in a huge mass of veins. I was only 19 years old, a kid, and not much support at all since my grandmother and I just moved to Philadelphia from Hawaii.The top surgeon in the state of Hawaii referred me out to either go to Berkley,CA or Philadelphia,PA. My mother was here at the time so I chose here...but um... just to let you know the kind of mother I had..we were sitting at the consultation table with the Doctor who once again... was scared to touch it and tried to send me up to New York. Then my mother blurts out "WHO's Gonna drive her in that TRAFFIC?" I had to excuse myself from the table...went out the halls and cried.
...just to add... a big cyst had formed over the years, they said it was from the avm and that 3% of people with avms develop these cysts but I kinda thought maybe it was from the radiosurgery I had done. They never went in surgically and I kinda think it's best when they don't because we are talkin veins in the brain...I mean...its not a tumor or a cyst where they can just take it out but the veins..my God..the veins ,were talking arteries with blood flow ...it's no wonder why all these Doctors are afraid to touch them...well, I kinda think it depends on the size of them of course. 1 or 2 deformed is much different than a huge tangled mess of veins... I mean ...where would they begin? It's not fair, I know. And there were times I broke down in tears of course. Especially when you don't have any family around. My mother moved back to Hawaii and my grandmother died in 1995 , so when they had to do an open brain surgery in 2005 I had no family with me. Just my 2 kids who were 11 and 15 yrs. old, I didn't want them to see me in the condition I was in so I had my friend stay with them.She dropped me off at the E.R. lol. I can laugh at it now because I tell folks "yeah, I got dropped off at the E.R> for a brain surgery". I was in between churches at the time so there weren't too many friends by my side. After the surgery itself I had a few come to see me in the hospital...but when I had the "actual" surgery...no one was there.This is not a pity party please understand me when I say this. I wasn't afraid...I had my Bible with me, the best surgeon Dr.Sean Grady who did the best , and of course I had Jesus with me ALL the way...and His support is really all that matters. I mean when your looking at death in the face...the only thing I say was not "dear Jesus please heal me ...but it was "Dear Jesus, please forgive me of my sins".
So u were fully healed now me I am scared no neuro seurgeon dare touch me bc of were it is ans when they did my 3rd embo they were only thirty percernt of what they whanted to get done and found two major artries running through it caused mine to bleed and almost caused me to have an anurism on the table so because of the size of mine and the arteries they found and it being in my left frontal lobe no surgeon will touch me i went to john hopkins where a couple people told me to go on here and they gave me a doctor but he told me the same, sorry took so long to reply siezures have been worse i have been in bed a couple days, but finally had to do the radiation surgery and i am so weak and vomiting dizzy a little, but the doctors never want to tell you if they cause something .like after they almost caused my bleed and almost anurysm i limp badly he told me he didn't do it would go away after 2 months and 4 visits he finally admitted after the surgery mabey from what happened now my brain is telling my leg to hurt and not work right .I think radiation is bad for you and yes i think there is a big chace it caused your cyst even x rays people get behind glass and they are shooting 1000 times that into our brains imagine it that way i would like to hear more from you like i said i got my first dose today and have 5 more i wanted to know where yours was me and you sound alike our frame of mind you sound more brave then me though ,write me back if you can.
I went to get my secon opinion no surgeon will touch me bc of size location and mainly bc of those two main arteries running through it they were reat there i have to give they had the mri and all the doctors reports i had plus the stuff he got from the hospital he just couldn't do anythythinthing else for me i still had to get the radio you know i had start today i barely feel like me i feel so sick i might have died but today i wish i would have left it alone. i did want to thank you i needed a second opinion so i knew a doctor more then one of you agreed on a good doctor before i started this even though i still don't want to go through with the next 5 treatment ant never wanted to startfrom the bottom of my soul i know all docs agreed no one would or could do anything else, so i needed to thank you for giving me more peace of mind then i at least had before thank you sweety.
do these siezures migraines, my spinal fluid id blocked so my back and neck kill me constantly, the contant pain in my head like something trying to push forcefully out, and i have been having those stokes since i was 21 before i ever knew i had an avm now the strokes are worse and it is so hard not to be able to talk and the waking up in paralttic sleep yours is 90% gone has it subsided at all do you think even if it goes all the way gone it will stop or should we all just hope it will, as it gottonany easier? thank you for offering your guidance.
I am sorry u had t go through that with you and your mom it is harh enough, me and my mom are the same way she took me to my first appt and she made me walk the rest of the way home we haven't ever got along kicked me out when she found a husband who didn't like me i was 15. You know why she kicked me out of the car bc i asked her 4 a pic of my dead father and wanted to know how could i love a dead person more then me I only wanted the picture to comfort me.. anyway then i found out bc i really don't have famly don't consider her her and her husband ad a fundraiser for my avm i have full ins.but can't work i didn't i found out later they used it for all kind of stuff for them and thier house ipad cell phone work on thier house ect... so i am sorry you had to go through that with your mom, when you were so young at leasy i'm going on thirty i could tell we were alike, i wish i was i was as brave as you i cry every time i get on that table for the radio i feel like thats killing me to.Sorry to get off subject i guess its a sore spot for both of us