a little late to the party, but here’s my bit - my brain AVM is about 3 cm big, so luckily on small-ish side. I was diagnosed after a middle-of-the-night seizure. Three different specialists told me its inoperable and that gamma knife is the best way to go, so I felt pretty confident going in (and I still do). I had my first round in March 2016 with my 12-month checkup around the corner. No real side effects so far and hopefully nothing will come. So yeah, finger crossed for me
How does your story continue? what did the doctors suggest?
I did get a second opinion and have switched over to those new doctors actually. They were much more knowledgeable. The only old doctor I had to keep was the one who actually did my cyber knife radiation and the plan for it. I have been having complications with brain swelling from the radiation. It has been 8 months since I got radiation and they haven’t been able to get me off the steroids due to the significant brain swelling. I have been in the ICU once since also. They are taking scans every few months to check on the swelling and are shooting to tapper me off the dexamethasone in March. Hoping everything goes well. Every time I have tried to tapper something goes wrong and I end up in the hospital. They are also concerned because I have been on the steroids since June 2016 that my adrenal glands may not wake up and they may have to put me on hydrocortisone, I really hope not. I also hope hydrocortisone doesn’t have the same effects of weight gain, moon face, leg pain, etc.
They were going to try a chemo drug called Avastin to reduce brain swelling but they want to take one more MRI and see if the swelling goes down any this next time first. It’s been a bumpy road. Thanks for asking! Overall I am pleased with their plan of action, just annoyed that my brain swelling seems to be occurring much longer and with a lot of side effects than most normal cases.
I’m glad to hear that things are moving along and that you are getting the right treatment. At the same time, I’m sorry to hear about the swelling and other complications. It’s great to see how positive you are despite all the side effects the treatment had so far. I really hope it’ll all be smooth sailing from here on and the swelling and all other side effect are finally gone.
Fingers crossed!
jeg hadde ein 3,5 cm på høyre side, den ble fjernet med operasjon 19 juni, fikk hjerne blødning dagen etter operasjonen, den ble operert med ein gang. Mistet litt følelse i venstre hånd, i dag sliter eg med utmattelse, håper det blir betre med tiden. Operert på Haukeland sykehus i Norge.
regards
jørgen
English text… I had a 3.5 cm on the right side, it was removed with an operation June 19, got brain bleeding the day after the operation, it was operated in one session. Lost some feeling in my left hand.
Today I’m struggling with exhaustion, hope it gets better with time. Operated at Haukeland hospital in Norway.
I managed to recognise the Norwegian dialect (one of my best friends is from Norway ). Sounds like you have been going through a really tough few months. I wish you a swift recovery of your energy levels and I hope with rehabilitation and healing from the surgery your hand regains more sensation. You have accomplished a great deal- not many people can say they have undergone a brain surgery or gotten through a bleed so it makes sense to be exhausted at this stage!
I start up woorking the 8. okt, I feel that my brain work bether than before the surgery, my ploblem was that one of the main arteria whent throug the AVM and strait back in a vene, soo the oksygen and nuttrian how shoud feed the brain cel, went back wihtout do this.
soo no I am back in business.
regards from jørgen
I am so happy to hear your feeling your brain functions better now and your soon fit to start up working again! This is really great news, best wishes to you to continue to have a briliant recovery
). Sounds like you have been going through a really tough few months. I wish you a swift recovery of your energy levels and I hope with rehabilitation and healing from the surgery your hand regains more sensation. You have accomplished a great deal- not many people can say they have undergone a brain surgery or gotten through a bleed so it makes sense to be exhausted at this stage!