Hi my name is Andrea. I am still trying to figure out what my AVM really means for me. I started having episodes of numbness when I was 13 (I’m now 30) but I never told anyone about it. Part of me just thought it was nothing but the other part of me was scared and I didn’t want to know what the problem was. It didn’t bother me very often so it was easy to forget about. A few years ago I started feeling dizzy and off- balance, but I thought it was due to a car accident and again I just lived with it. This year after being diagnosed with diabetes I finally talked to my Dr about everything because I was/ am also experiencing severe headaches. A week and a half ago I had an MRI and then a week after that an angiogram to diagnose me with an AVM and aneurysm. I am hoping to hear from the neurosurgeon’s office tomorrow to discuss what treatment options are best for me. I know no one but my doctors can give me definitive answers, but I have a few questions about other’s experiences of anyone is willing to share.
•how long after diagnosis were you able to get the treatment needed?
•did you have to make major modifications in life style after diagnosis? (I am a ballet teacher and worried about my level of activity at work)
•I am feeling somewhat isolated from friends and family right now because the AVM is all I can think about lately. Is that a normal or am I crazy?
Hi Andrea:
Welcome to the AVM-ers support group. We are here to encourage and support you. If you scroll through some of our topics, you will find answers to a lot of your questions. My AVM in my Cerebellum ruptured in Nov, 2014. I had Gamma Knife Radiation in April, 2015. I think anybody with a ruptured AVM has to modify his/her life. For me, I had to learn to walk again and when I did, I had (and still have) balance issues; problems w/short term memory; couldn’t drive for 6 mos. because my reaction time was super slow; imperative that I not over do anything; get plenty of rest. However, it is possible to have a very productive life after an AVM diagnosis. We’re here for you. Wishing you the best.
Andrea,
Welcome! It took me ages to get seen by the right doctor and then get treatment but you’re in the US, I think, where the way medical treatment is prioritised is different.
Have a read around and get yourself used to the idea of treatment, etc. With luck, you won’t have long to wait and getting your mind in the right gear before the doc tells you lots of new things might be helpful.
How much adjustment you need to make post op is completely dependent on the size, location and treatment plan for your situation. There are three main forms of treatment:
- Radiotherapy, for example with something called “gamma knife radiation”. So far as I know, this is suitable for hard-to-reach-safely AVMs and very small vessels. This treatment can take years to complete but is intended to be low-impact.
- embolisation, which is blocking off the AVM blood supply using glue or particles.
- or a craniotomy, which is removal of the offending thing by surgery. This treatment carries perhaps the greatest risk. Often, people will have an embolization as a precursor to a craniotomy, though I’ve had just the embolization.
If you’ve just had an MRI so far, it is likely the doc will want an angiogram to get a good look at what you’ve got.
It’s absolutely normal for a discovery of an AVM to take over your life for a while. I hope that by reading and getting support here, you learn a bit about what this all about and can go into surgery or whatever better informed and calmer. Not everyone needs surgery and not everyone who needs surgery can have surgery as the risks of surgery can outweigh the benefits… there’s a whole scale here.
So… welcome, have a wander around. I hope others will offer their experience; and carry on asking questions.
Best wishes,
Richard