My Mom had an AVM in March 2011. It took a biopsy of her brain and several other tests to come to this conclusion. Her AVM ended up supposedly healing itself. To this day she is still dizzy. Some days the dizziness is better than others. She is able to walk without a walker now after months of therapy and is able to go for car rides and out to dinner. She is improving! However I was wondering if being dizzy after this long is to be expected? She always says she "just doesn't feel good." It's starting to get her down because she says no matter what she does she doesn't get any better. Thoughts?
I'm not a doctor but I have to say I've never heard of an AVM "healing itself". It sounds as though your mom had a bleed, yes? First, I would suggest seeking another opinion by a neurologist, neurosurgeon, vascular surgeon, that is knowledgable about AVMs to confirm that it is not still in her brain. They should at the very least order and MRI with contrast and/or an angiogram. As for the dizziness...I had a bleed almost 4 years ago and I still get dizzy on occasion. Sometimes worse than others, sometimes very bad. My neurologist ordered a series of tests to make sure there wasn't another underlying issue and there wasn't. I thik it's just something that I'll probably have to deal with the rest of my life. Your mom should discuss that with a doctor too. Do please insist that she get confirmation that the AVM is gone.
Basically, this all started with vomiting and dizziness. It took them a few months to figure out what was causing all of this. They did many MRI's and CAT Scans. Ended up doing the biopsy of her brain. Then they did the angiogram and noticed that the area that looked suspicious on the MRI's showed signs that at one point there was activity there but that it was healing. They said 50% of them heal themselves. It was in her cerebellum. I don't know if she actually had a bleed? I don't know what that entails I guess. They said that her blood was flowing in the wrong direction in that area. She had to be in a nursing home for a couple of months and then had therapy at home. Now she is done and is doing the exercises on her own. She has a checkup tomorrow with her neurosurgeon so I guess she will know more then. Thanks for the reply! =)
Wow! 12 years! Oh my goodness! She gets the vertigo as well. She used to vomit constantly it was so bad but now that doesn't happen. It just seems like she is dizzy most of the day. She has to sleep in a recliner at night because she can't sleep in her bed. It's such a terrible thing because she just can't do anything she wants to. :( She just stays at home and will get out for maybe an hour a day to go for a car ride with my dad (which is a huge improvement)! I just want to see her be able to enjoy life again. Perhaps I'm just getting impatient. Thank you for replying and I'm so sorry you have to deal with this. :(
You are right! We are so grateful for how very far she has come!! She has made such an improvement the last few months! I guess I'm just being selfish because I live hours away and want her to be able to come visit! =)
Hi, Trish. It is RARE but an AVM can shrink and even disappear over time through a process called calcification according to my neurologist. It happens naturally with age (I am 56) and is a very slow process. I've also read that having several miniscule bleeds in the right places can close one off. But don't ask where I read it -LOL! When diagnosed, I became a sponge for info and read anything and everything I could get my hands on.
Wow Karen! I have never heard that. Learn something new every day. Thanks for the info. I'll have to look into that a bit more.
I can still experience dizziness sometimes (it s rare)at 11 years out from surgery. Also check into nutrition. You will want to make sure that she stays well hydrated and might benefit from and eating schedule to stabilize blood sugar. Blood sugar might play a role in when she gets dizzy along with the AVM. But play it safe and consult a nutritionist.
Another good idea is to log meals and snacks into a notebook to bring with you so that the nutritionist has something to go off of.
Its not selfish at all to be worried about your mother at a time like this and living so far away I'm sure brings up feelings of helplessness. That said, you are in a process that calls for patience and acceptance of that helplessness. You may all have to embrace a new way of living, which doesn't have to be a bad thin., It can show you strengths and a sense of peace you never knew you had, which is a wonderfull thing. Please don't give out to yourself for being selfish, what comes across for me is your love for your mother. Blessings
Hello, I still get dizzy from time to time.The doctors haven't given me a solid reason. It used to scare me terribly. I had surgery for m avm in 1999 and in 2005 it had returned. I had a bleed in 2009 and had gammaknife twice. I didn't experience the dizziness until after my 2nd bleed. Tell your mom to take her time and just keep telling herself that she can do it!!!