I have just joined and would love to speak to many of you.
My husband has an AVM to the rear of his head left hand side its 6cm in size and cannot have radiosurgery as its too big but may be able to do embolisation then surgery we have a meeting on tues.
This obviously has been a shock to us all and would love to hear from some1 who has been through all that we are about to go through.
Hi Claire; As the AVM is big it has to be reduced for Gamma Knife radiotherapy to work, think it has to be about 3cm, so some viens, feeders will have tto embolised first. The team will tell you on Tuesday.
Till then there is lots of info on this site to look at.
Hi Claire…our avm journey started in Jan/08 when my daughter ashley fell on the ice and hit her head very hard, slight concussion…me being a paranoid mom…made her go to hospital for ct scan…they discovered an avm so the fall was a blessing in disquise, i guess. They attempted emboliztion in May, but it was determined the avm was too close to the motor center of her brain and if they embolized she would be paralyzed, so they aborted and then at the end of May Ashley had four fractions of Cyber-Knife radiation therapy…she was on some very potent steroids, they caused her develop type 1 diabetes, so dealing with entire lifestyle changes for an active 20 yr. old. No side effects other than more hair loss than she was told to expect, and the diabetes. Follow-up Mri’s aren’t showing much change in the AVM but they said it could take up to 2years she will have her first follow up angio gram which is the only definative way to determine if any of the vessels have changed or shrank, and that should be in May. I would write down any and all questions you may have…it is easy to get flustered with the neurosurgeons speaking in complex terms, etc…but research and explore all your avenues of treatment. Best wishes!
It is hard to say what treatment will be best for him. The doctors will give you their recommendations and then you need to ask lots of questions and do some of your own reading and then you’ll get closer to an answer. There are lots of people on here who have had embolization and surgery so it is possible. How old is your husband? They found my son’s AVM the same way- because he had a seizure. Just take this one step at a time Claire. Get your information first. Sometimes you need a few meetings with the doctors to understand it all and ask the questions you have. DON’T BE AFRAID TO ASK ANY QUESTION YOU HAVE! I had a huge list when we went for our appts. AND I wrote down the answers while I was there because I was so stressed I couldn’t remember anything when I got home. Good luck with your meeting. Let us know how it goes.
claire…i had 3 embolisations…within a week where i was keept in a drug induced coma…the following week i had a crainotomony…it will be excactly a year ago tommorow…i was also told i was inoperable as my avm was a massive 12.5cm 6 surgeons told me no way…the seventh told me i would be crazy to leave it at my age…because this thing had so much wear and tear it was ready to blow…as it had 3 anurysms…and if i left it i would never have been able to have children…i was in such a delimma 6 say no 1says yes…in the end i went with the surgeon i felt most comfortable with…so i went through with it…recovery has been a long hard road and i still have a long way to go…but i never once reget my decision…yes it has been hard…but i am here with my husband and family…and one day i too can start my own family…and i have get support that gets me through each day…the biggest thing if you are considering surgery is to ask the possible outcomes…and only go through with it if you feel comfortable i was given a one in four chance of left side paralysis…and it happened and like joy said take a list of all your questions another good idea is to tape the meeting on a recorder so you can relisten to what is said…because it is so hard to remember everything…good luck with the meeting…please let me know how you go…if you have any other questions please don’t hesitate to ask…best of luck
Thank you all so much for the info.
Joy - jon is 32.
They have said radio-surgery (which I think is the Gammaknife???) is defeinately not an option yet as the AVM is too big. They have said if we choose to leave alone there is a 4% risk each year of there being another bleed. They have spoke as I said about embolization and then op, his %'s for op are high for sight, memory and paralysis loss. Its really difficult to make a decision because at the moment apart from tiredness there are no other symtons (apart from 2 seizures), we are definately swaying towards the op at mo.
I will be making my list today thats really helpful…thank you xx
I will let you all know what happens tomorrow.
The position of Jons AVM is left hand size to the rear and the AVM holds the 2 main arteries into the brain stem (I think I have explained that as well as I can!!)
just listen to the specialists as they do offer you the very best treatment its a scary road when you first start out but you have found the best website for the best info stay strong