I’m 30yo and back in November went to GP as I’d had episodes of numbness and tingling in my right arm and leg (about 6 episodes in 4 months). I put it down to lots of things but finally went to ask about it. I also suffer with headaches and have done since I was a teenager. I was referred to a neurologist who tested my reflexes and all was normal but she referred me for an MRI brain scan just in case.
They’r found an AVM on my left temporal lobe and think this is the cause of my symptoms. What happens now??
I believe I’ll either have another MRI or a CT scan. From there they’ll decide if I need an operation on it. The consultant neurologist didn’t seem concerned but surely if something in my brain is bleeding giving me symptoms (albeit not too serious) then something needs to be done??
Has anyone been diagnosed with an AVM but nothing has been done about it?? I’m hoping it’s not that serious but is it?!?!
Has the AVM bled yet? Have you had it drained?
After my AVM bleed was drained, I was stabilized and it was six months before I had surgery on the AVM itself. Because it was too deep in my head, my team decided to treat it with Gamma radiation (the Gamma knife). A frame is mounted around your head which is used to target hundreds of beams of radiation to the AVM. However, it takes up to four years for the AVM to realize it is not getting blood-flow and then die. (This means routine MRIs and avoiding any head trauma during that time.) An MRI will also reveal if additional Gamma radiation is needed. (I had this procedure twice - 2007 and 2012 - after my 2006 bleed)
Another option is removing it surgically. This involves a surgeon actually going into your skull to remove the AVM. This is usually done if the AVM is not too deep–obviously they don’t want to cut too far into the brain.
A third option is embolization done through an angiogram. An angiogram is a procedure where dye is used to enhance the imaging of the brain (can also be used for heart, maybe other organs too). The major vein is found in the groin along the inside of the leg (right, I believe). Through this vein, the blood flow to the AVM is blocked and the AVM dies. This option was considered for me, but the angiogram showed that the vein to the AVM in my brain was not straight, and it was too hard to access that vein.
Talk to your surgeon about which option seems the best for you, and proceed with surgery soon. If your surgeon does not think you need surgery, GET A NEW SURGEON! We fired my surgeon who told me I didn’t need surgery and instead suggested I should go sky-diving!! My new surgeon was ready to operate on me right away.
All the best.
Sarah each case is different so you need to do all the tests your doctor’s ask so a plan of treatment or just watch can be put in place. I am 11 months in from finding mine and we now have a plan for embolizations and craniotomy. I went through extensive testing to get where I am. The waiting is hard but you really don’t want anyone working on you without the proper information.
Sarah, welcome. I also have an AVM in my left temporal, discovered as a result of a bleed in May of last year. I had no apparent symptoms prior. I have since had gamma knife. The best advice is be ready with lots of questions to develop a plan as their may be a variety of options. Mine is deep in the temporal so they recommended the gamma route, craniotomy was/is possible but high risk for side effects. Take care, John
Hi. Welcome to the site!
There is a whole scale of these things, so you may not have had a bleed, it may never bleed but you’ll need the various scans to do the assessment of what it looks like, whether treatment is needed, is a good idea and what sort of treatment looks the right thing to do.
So… For the meanwhile, ask us whatever questions you like and wait as patiently as you can muster for the scans and results. If the doctors start to be concerned about it, things will speed up; otherwise I would say stay as relaxed as you can about it.
AVMs are blood-pressure related, so if you start to have symptoms like more headaches, dizziness or strange head, consider cutting out stimulants like smoking, coffee, chocolate, alcohol and such things, and that can take the pressure off. If you have a sudden, severe headache or other more immediate, acute symptoms like a seizure, etc, then obviously go urgently to the doctor / hospital.
Some people don’t need to treat their AVM, though if yours is giving you numbness, clearly it needs looking at and decide what to do.
Hope this helps. Very best wishes,
I also was told over the phone by my GP about 8 weeks ago that I have multiple AVMs. This is all I know.
I did have a consultant appointment booked for 8th May, but had a phone call today to say it has been cancelled as the consultant is now not going to be in that day! This I find completely unacceptable.
I do understand your worries, as I do have 2 small children. When I first found out I spent most of my time worrying. But even after this short time, I find I now hardly think about it and the sleepless nights are gone. Time is a great healer. I hope you are able to get to this place.