This is my first post here.
I am a 25 year old female. living, working, and going to graduate school in NYC.
Last week I was diagnosed with a grade 5 AVM in my cerebellum.
I have seen 3 doctors so far, all of which do not recommend any treatment because the risks are too high.
I have been relatively lucky with my symptoms. Balance issues and Vision (nystagmus) which is being helped by glasses.
My question is, what is the likeliness that this will grow and cause me further/worse symptoms? I don't want to deteriorate.. I'm scared.
Thank you for your answers.
An avm can grow by recruiting new feeding arteries. An avm may also grow during puberty and/or pregnancy due to certain types of receptors that are located in the avm’s blood vessel’s cells that will cause cell growth when they are trigged by whatever type of receptor(s) that is present in a cell. A progesterone receptor in a cell would trigger a cell to grow if it is exposed to progesterone.
I was diagnosed with a large AVM in 1986 when I had a seizure out of the blue, I had seen a few doctors and one doctor which back then that was doing embolization, the risks were high something would happen, paralysis, blindness, so I decided not to do anything and just live on seizure meds. Which worked out pretty well for thirty years until this past February when I had a bleed. I was lucky to survive and get back to work in two months. I had a second stage embolization June 2nd and was back to work in a week. I am setting up 3rd and last stage soon. So for the 30 years I was monitored by my neurologist with cat scans and mris and there was no change. My symptoms stayed the same. some days I felt totally normal, some days not so good. We are all different so question is what you think is best for you. It is important that you take good care of yourself, no smoking, eat right, well that's my story, good luck to you
Hi there. I also have a large AVM of the Cerebellum. Mine was diagnosed when I was 14 (I am 42 now) and it caused a secondary condition (Hydrocephalus). I have had surgery several times for that but never on my AVM which is un-ruptured. The docs once said they could try embolisation or Gamma Knife (surgery is not an option due to location) but it would still be very risky. Fortunately I don't have much deficit. And although it means I have to live with the AVM I chose not to proceed with treatment. Time will tell if this was the right decision to make. But for now I work full-time, drive, have a family etc. I have routine MRIs every couple of years and so far there has been no significant change to my AVM. AVMs are all different and what's best for one person may not be best for another. We all need to make our own decisions. I just decided the risk of deficit was worse than the risk of living with an AVM. Best of luck to you.
I agree with everyone that ultimately you have to weigh your options but I will say this...you are young & recovery will be easier compared to if you were older more than likely. And if it's already beginning to cause some minor issues than it will more than likely bleed or cause a seizure or more deficits. I know treatment is scary, I just went through mine last week. You mentioned you've seen 3 different drs...they all recommended no treatment at all? Have you gotten an opinion from Barrow Neurological Institute? They are the best! You can upload your images along with reports & they will email you their opinion in a week. People from all over the world go to Barrow for their AVMs. Worth looking into if you haven't already. https://www.thebarrow.org/Neurological_Services/2nd_Opinion_Program/index.htm
Good luck to you on this crazy journey! AVM STRONG!
I initially passed on treatment opting to just have my AVM monitored. However this was because I thought if the AVM ruptured I would just die. Then I saw a show about a young man with an AVM in the same location who wasn't so fortunate, who had a major bleed and sadly for him he wasn't lucky enough to die. Now he is in a wheelchair, total care, unable to do anything for himself, severely handicap yet aware of everything going on around him. I never want to wind up like that ever! Once I realized this thing could rupture and not kill me that's when I knew - oh no way in hell! Dig it out, get it out, get it out, out, out!!! Of course they couldn't operate so I had gamma knife. Initially I regretted it because it caused swelling which caused me to have both headaches and seizures from hell. Also just when it seemed I had truly beat it and was finally getting back to normal I developed brain necrosis. Not fun. I eventually had to have open brain surgery. All told it's taken me eight years to get back to me. I wouldn't wish all I went through in that time on anybody. However today I'm really, really glad I went through it, feel happy, fortunate and very blessed to have had the opportunity to get that rotted, cursed, freaking, ticking time bomb thing out of my head. It feels wonderful to be cured!
In my opinion, and that's all it is, I'd listen to the 3 doctors. The fact that they know about your AVM means it can be monitored. I'd be sure to tell them about the symptoms.
My heart goes out to you. It's natural to be scared. I think other than AVM's we all have fear in common.
I just had AVM surgery and it's all out. I've been through headaches, etc., and I agree fully, In am so happy that it's out!!
Thank you for the replies.
jjsbabies- I am sending my records to the Barrow Institute tomorrow! As for treatment, I have seen 5 surgeons in NYC and they have all said that the treatment (partial embolization) is very risky and could very possibly compromise me further than the very mild symptoms I am showing now. The game plan right now is to be monitored and if anything should progress, then we can go ahead with treatment.
Good for you rmcfad. I think you need to hold firm and do what your instincts tell you (and the docs have advised). I can entirely understand folks who want to get rid of this thing asap. But sometimes you have to weigh up the risk of living with deficit after treatment too. No-one can predict this and there's no point in making the rest of your life more difficult than it could be.
I’m 30 and was told by doctors mine is inoperable/untreatable without high risk and little reward because of location and other factors, that was 5 years ago… I’ve gone up and down… Having one that’s untreatable is rough and i feel like constant attention to rest rehab and recovery is needed to live regular life. I’m sorry. But ya never know. I’ve lived 30 great years and every good moment is worth the struggle.