My son had his yearly angiogram and they discovered part of the AVM still in his head! It is less than 1 cm. The neurosurgeons are deciding how to remove the remaining AVM. They will either use radiation or another surgery. Can anyone tell me more about the radiation? That choice seems ideal to us only because we can have it done locally and it is an outpatient procedure. If he has the surgery we'll have to travel to Utah again. I'm feeling a little overwhelmed. I thought we were finished and just working on recovery. :(
I had stereotactic radiation for the leftover part of my AVM. Doctors had me measured for a mask to hold my head in place while the AVM was radiated from five places for about 30 seconds. I had radiation five days in a row. Afterwards my hair fell off from that area and I got bronchitis. I was able to work in the meantime instead of recovering from surgery. By the way, my HMO didn't cover my treatments with a chiropractor who supported me in my recovery. What follow up treatment do the surgeons offer?
When conventional doctors give treatment, they are done. My AVM is gone. I hope this information helps.
hi i have had stereotactic radiosurgery using gamma knife twice to treat my avm. i was young like your son when my avm ruptured but had no treatment until radiation for 20yrs it worked for me after the 2nd try and my avm is now obliterated. dont worry about it see a neuro it works. good luck x
hi there. was the first procedure surgery, i am assuming? in my little opinion, i think radiation (combo treatment) at this stage may be a good option. less traumatic too. all the best on the journey to recovery.
My daughter had avm in her brain. She had several procedures that did not work so the last procedure she had done was Gamma Knife Surgery (radiation). Just want you to know it is not an instant success and can sometimes take up to 5 yrs before dissolving the AVM.
My daughter just went for her recheck two weeks ago. The AVM is dissolved, however there is left over necrotic tissue (the dead parts of the AVM) still in her brain. These dead parts have caused swelling which in turn has caused super migraine headaches.
There only happens to be one Gamma Knife Surgeon in all of Oklahoma. Right now her surgeon is getting together with physicians from across the country to see if she might be a candidate for some IV procedure known to finally dissolve any left over necrotic tissue--thing is it has never been used for necrotic tissue in the brain. So we are in a holding pattern until we learn more.
Just out of curiosity, what part of the brain is your sons AVM located in IE: emotional part, motor skills part etc. My daughters is/was located partially in an emotional area and partially in a motor sills area which set off a big chain of unexpected reactions such as manic bi-polar and seizures to name just a couple. My daughter is 29 yrs old. Her AVm was not found until she became pregnant--the pressure of the pregnancy caused the AVM to start leaking.
Prayers!
Well, I'm sorry about the news. As I know the majority of crainiotomies lead to complete obliteration.
But your news kind of had me worried. Because I had a crainiotomy in 2008 and I underwent no angoigram after that. My doctor said I was ok without a need for angiogram, but considering my age (25 at that time) I could better go for an angiogram. However, I was very afraid,and just dispensed with it and considered everything just done. Ita has been 5 years now, no problem, I'm back to even playing football, shooting by head.
Do I really need to undergo an angio??? I just don't want to, coz if I'm recognized with remained avm, my whole life will be devastated.
I had radiation surgery for my 3.5 cm AVM in my left frontal, left temperal lobe. it took 10 yrs for it to shrink. I had this procedure done in Gainesville, FL at Shand's hospital. I like this hospital because its a "teaching" hospital. I had 37 arcs of Alpha Rays and was told I couldn't have it again. It worked, side effects are small. Gave me 16 more yrs of life so far. Hope this helps! God Bless your son.
I’m sorry about your son. This is my suggestion because this is what I had to do. I had 2 surgery and the 2nd one I had a stroke and the I had radiation other wise I would have 2-3 more surgery. I went for radiation and after 3 years the avm is gone.
I've had both the regular surgery when I was 12, but my A.V.M which is located at the base
of my brainstem, ruptured when I was 26 and I had the gamma knife ( radation ) done. I would have chosen radiation from the start. I don't recall any side, not to say there is none, everyone's different, but to this day all's I have is four little marks on my head. But full discloser I had a nasty stroke fist. Don't know if this helps good luck on your journey.
I had a Cyber Knife radiation treatment for my AVM.What i can say is that's is very easy.No pain,no prep other than a CT scan.Walk in,walk out.Well,i had already had a angiogram.It can take up to two years plus to do it's job i was told.My last check showed no change.
You may wish to join this sub-group…http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother
I had a Carotid Cavernous Fistula (CCF) Barrow Type D (low flow), a type of AVM, that was too small for any other surgery except stereotactic radiosurgery. I had an angiogram to pinpoint the exact spot of the AVM. They can either do this surgery as an outpatient procedure at the hospital right after the angiogram or they can do the procedure in the Dr's office. Mine was done in the office. A mold was made of my face and I came back to have the procedure which took a few minutes. I did not feel anything during the procedure, all I had to do was put on the mask. They "shoot" the area with radiation which cuts off the fistula. It took a while for the procedure to work but eventually the fistula was closed. There is a very slight chance of the surgery area becoming cancerous later on in years. I chose to have the surgery because the success rate was very high for small AVMs.
Three years later and I am pretty much completely back to normal. Hope this helps.
Hi
I had Stereo Tactic Radiation surgery on the 6th March 2013 as the one feeder vein went over my one facial nerve which if they had embolised would have caused paralysis on the one side of my face. When they do the Radiation Surgery you feel a hot sensation going up your neck with mild pain.I suffered from Nausea for approx a week. My brain remained really swollen for quite a while and I suffered with Major headaches for ages. My head is still a little swollen and my headaches are fortunately not as bad as they were. I will have to have another Angiogram done in about 16 months so that they can check on my AVM .
Please go, my son did same thing he is now in hospital with ruptured AVM that grew back. He has 25% chance of servival. Don,t take the chance.
Hi,
I'm confused are you saying he had a craniotomy to remove his AVM, doctors left a small piece and now you have to decide which method to use to treat what they overlooked?
Yes, my son did have a craniotomy in Nov. of 2012. The doctors are deciding what method they want to use and I wanted to know more about the stereotactic radiation treatment. The neurosurgeon thought he got all of the AVM but apparently not.
The neurosurgeons are discussing whether to do another surgery or the stereotactic radiation. I wanted more information about the radiation since we've already been through the surgery and I know, pretty much, what to expect.
Thank you for your response.
Thank you!
Yes, my son had surgery in Nov. 2012. The neurosurgeons are discussing what to do next. Thank you for your response.