What treatments have you received if you have/had a right parietal occipital lobe AVM? What size was your AVM? Do you have any defects as a result of your treatment? Thanks for any help.
Hello☺my avm is about 2cm in The left temporal lobe. I’m going for gammaknife treatment in june.
What is your story?
Linda☺
I have a 4 cm posterior parietal occipital lobe AVM that bled when my mother was 5 months pregnant with me or when she gave birth to me. I am currently 30 years old and have not had a bleed since my mother’s pregnancy with me. I have some disabilities as a result of the bleed. I have been given the option of Gamma Knife or watch and see approach. I have chosen to watch and monitor for the time being. I am continuing to research different options. I am hesitant about Gamma Radiation due to my AVM being 4 cm and the possibility of my current visual defect becoming worse due to radiation damage to healthy tissue.
my daughter's avm is in this side, not sure how big it was, but for her they couldn't get the pressures down or swelling & had to remove 1/2 her skull in a crainatonomy not once but 2x & is now awaiting a prostetic bone.
Yikes Desertlily83. I hope that your daughter does not have anymore complications. Many hugs to your daughter and you.
thank you helen I hope not either, still has angeo gram to go through & poss gamma knife, hope we don't have to go through that...so many surgeries for this condition.
My AVM is 2cm in the sulcus of my right parietal lobe, near the motorsensory section. I’m 33 and had stereotactic radiotherapy April last year, the evening of my treatment I did have swelling which resulted in focal seizures however the seizures have slowed.
At my 12 month check up last month I was informed there as no change and the 1-2 year timebase was changed to up to 4 years.
I had 1 high dose of stereotactic of 17gy.
In saying all that, I do not regret having had the radiation although it’s been a tough ride and the brain swelling to start was scary it was certainly better than possibly stroking out on the table undergoing surgery.
My suggestion would be this… You have so many more years ahead of you, do you want to live with the possible chance it could heamhorage again or do what you can to fix it and not have the stress. Don’t get me wrong I still stress bit it’s only been 12 months since my treatment.
Gosh Desertlily, I hope all goes well (I’m sure it will) it’s sad to see young ones go through this sort of stuff 
Thanks for your reply Shannski. Did they say that it is taking longer for the Gamma Radiation to work since your AVM is larger than 1 cm? I have read research that suggests that Gamma is best for AVMs that are less than 3 cm in size and treatment time varies on size, location, number of feeding and draining arteries and veins,type of nidus, flow rate, and other factors.
my avm is on my right frontal cortex (i think) as my memory isnt so great! i apologise for that, ive had 3 glue embolisations and was told there was only a small residual piece left, that was in 2011, last year i got sent to sheffield to see a consultant as im from scotland it was a 6hr train journey, 4 weeks later i was back in sheffield for gamma knife surgery, that can take anything up to 3yrs to see if it works,had that and now go for my latest angio on thursday, go into hospital tomorrow, and if the gamma knife hasnt worked they want me to go for a crainiotamy, my avm got diagnosed 5yrs after id started taking siezures, i still take siezures for which i take 26 tablets a day for, and i suffer memory loss, i feel like 90yrs old and im only 37,
Thanks for your reply Sazzybear. I hope that your angiogram will not show any residual AVM and you will not need a craniotomy. I will keep you in my thoughts and prayers.
thank you helena i appreciate it. i wish id know of this site before now i would have had a lot more support from people like yourself and others, i hope everything is ok for you aswell, once again thank youXX
My occipital temporal parietal avm was 40-50% of my right brain(sorry I don’t remember its size in cms). i received 3 embolizations followed by a crainiotomy. The first surgeon recommended that I not treat it but the thought was too unsettling for me so I sought a second opinion. I now have a visual field of about 110 degrees. The most concerning aspect isn’t the vision loss, but the “mental fog”. I randomly feel out of it and have trouble concentrating. It comes and goes at random and is seemingly uncontrollable. Nobody warned me about the “mental fog” and I wish I’d known before I decided to receive treatment.
Thanks for your reply Daniel. I have a visual field defect on both eyes. Both of my optic nerves are small. I have bad myopia and have astigmatism in both eyes. I suffer from double vision, flashes, and floaters, and other vision issues. I have a benign pigmented chorodial lesion on my right retina. I have some mental health issues. I do not know if any of these or my other current health conditions would be made worse by treatment. I hope that you have seeked advice about your mental fog. I have tried a few different mental health providers but they do not seem to comprehend what I am going through. I will be seeing another provider later this week to see if they can help me. I know that there is help out there but it might take time before I find the right one. I will keep plugging away.
I had a subdural hemmorhage almost 13 years ago from a burst AVM in the right parietal--I believe in the motor-sensory area. I had a craniotomy because I was told by my neurosurgeon that a small AVM was much more likely to bleed again and he felt (at that time) that the risk was too high to wait the amount of time that the gammaknife would take. Others here will have much more up-to-date info on gammaknife.
When I had the bleed, I was numb on my left side from my armpit down to the bottom of my foot. The numbness has remained in most of my foot and toes and to a lesser extent on the outside of my ankle up to about mid-calf. It's really just an inconvenience, and sometimes it makes me laugh. I can adapt very well but when I do something 'new' and my foot doesn't know where it is 'in space', my brain spazzes out LOL.
I hope this helps you a little bit. I wish you the very best!! Gail
Thank you Gail for your reply. Do you use a DAFO or AFO on your left side? My left side is weaker than my right. My left heel cord does not move very often. I use a DAFO to prevent falls from dragging that foot and toe walking.I wish you the best.
Hello Helena,
I had AVM in the right parietal occipital lobe.If I remember correctly it was 3.5 cm and a grade 3 or 4 Martin Spetzler grade. I had 3 aneurysms. Two of the aneurysms were small and the other was 11.8 mm. I had the larger one coiled. I luckily did not have a bleed. I traveled to Duke university were I had two embolizations and then a craniotomy. at my one year MRI it was found that the two remaining aneurysms complete resolved and my AVM was completely obliterated. I was very lucky. One, finding such a talented surgeon and two, walking away with so little deficit. For me Gamma knife was not an option because I was told it could take years to take effect and with two remaining aneurysms ( with a probable of more to come), in my mind I didn't have the time. I definitely could not do the sit and watch thing. I could not be happier with my results. I now have quality of life. I suffered horrible migraines for years. I have not had a migraine since. If I can help you in any was just reach out.
Thank you Tcm423 for your reply. There has been no aneurysm formation within my AVM. I am glad that your craniotomy and coiling with the one aneurysm went well for you. It appears that you had one spectacular surgeon to be spared no after effects. I have not read or heard about very many outcomes with no after effects. I appreciate you sharing your experience.
Helena they cannot really tell me what the reason for the time being longer than initially told. Aside from that is could and in 12 months time if my MRI shows no change I will need to have another Angiogram. From what I recall there were no major feeding or draining arteries or veins but it's positioning and my age were factored in for treatment.
I do hope this helps you. although I am in Australia my understanding is the treatment is very similar
Thanks for replying to my follow-up question Shannski. Any and all information is helpful since it more than I had before.