Life after AVM

I had surgery for my AVM about nine years ago. They first thought it was a tumor, but after the second arteriogram they discovered the AVM. Had 7 1/2 hour surgery and they put a coil in my brain. Told me I would never have another problem. I have just recently started having extreme pressure in my head upon standing and can hear my heart beating in my ears....not the whoosing like before just the pulsating sound. Has anyone experienced a relapse since there surgery? I don't know if I should go back to the doctor.

Hi Susan. Did they do a follow-up angiogram after surgery? Sometimes MRIs do not show everything. If any part of the AVM is left the it can regenerate in an adult. Could also be a problem with scar tissue. A lot of members on this site have problems in that area. If you have good insurance…go see a doctor. Please keep us posted!

Thank you so much. No they just said they fixed it and sent me on my merry way. No mention of ever having a follow up done.

I am supposed to take my scuba diving class next week and now I'm wondering if I should because of the pressure under water....going to make an appt with a neuro and discuss. Hate to go through this again!!!!!

Please talk to your Dr. Before you scuba dive. My friend had an aneurism and was told she could never scuba dive again. I had an AVM but I have never been scuba diving so I didn’t think to ask the question.

Def go to your doctor! I had GK last May and I have had pressure in my head since January with hearing my pulse, and that ringing noise. mine doesnt come when I stand tho, i have it constantly. i had an MRI on Saturday and I have a lot of edema, but my AVM has shrunk significantly apparently. But they found nothing else. I am going to an AVM clinic in Toronto (I'm from Winnipeg) in June for a second opinion tho. I hope you find the answers you need. I do not recommend going scuba diving either...

Hi Susan,
I'm almost 4 years post crani. I still sometimes hear my hearbeat also. It started when I started having issues with vertigo about a year ago. My neurologist ran a bunch of test (to determine if it was seizure related...it wasn't) and I also had an MRI with contrast. The AVM is indeed gone, no regrowth. I find the heart beating worse obviously with or after exercise. The neurologist doesn't know why but we do know that it's not an AVM. Talk to your doctor. Good luck.

I am 50 years post craniotomy for AVM and bleed. I still go to a neurologist about every two years. This year I had an EEG and a cat scan just to make sure it was the same, It is obliterated, but it makes me feel good to hear those words.

beans

Please check with your Doctors before the scuba diving class! Even if you have done lots of diving it would be good to revisit this.

I have been doing hyperbaric oxygen therapy (for radiation necrosis, long story) and this involves diving to 45 ft depth and then breathing pure oxygen for 2 hours.
The pressure changes from compressing to 45 ft and then decompressing make my symptoms (constant grim headache) from AVM go epic, and I passed out during the treatment from the pain the first time I did it. This may not apply to you at all as far as pain, I hope not! But other changes may occur under pressure - and trust me, I’ve seen 3 diver emergencies since I started treatment and i would not wish that on anyone. I think an AVM related dive emergency would be very ugly.

My docs say people are also more prone to seizures when breathing oxygen under pressure. Since people with AVMs are at a high seizure risk anyway, this means you may really increase your risk of seizure while underwater. I still do the treatment and have never had a seizure in there, its pretty routine now, but they do a different oxygen mix for me and monitor me more because of this.

It may be still possible for you to dive. You may have to be extra super careful about your air mix because of the increased seizure risk. I’m on dive #87 and its been very routine now that they figured out what pain meds I need to get through it. The staff at the hyperbaric medicine center at Virginia Mason in Seattle have been fabulous and wonderful.

Thank you Jessica. I have never been scuba diving before. This would have been my first class. I have cancelled it and have a neuro appt on May 29th. It is amazing what everyone has been through. Every story is different or more intense then what I've been through. I feel for everyone who has to deal with this. Good luck to you and with your treatment.

That is great. Thought I was done after my surgery and now nine years later I'm here again. Hopefully this doctor has a good knowledge of AVMs.