Arteriovenous Malformation (AVM) Survivors and side effects

Hi @lisalucier, thank you for the information. My neuro team has no answers regarding what to expect or what to do to help with my recovery. They say, “we don’t know” because as they explained, not many people have survived. I was told I was very lucky. I decided to partake in a case study in order to help others who suffered a ruptured AVM.

Yes, I did start outpatient therapy last week. It has been a big help doing exercises to improve my balance. I do daily exercises on my own at home as well. The exercises seem to get easier the more I do them. Thanks for asking.

Hi, @avmcbellar - I'm sorry to hear that your medical team has no answers. Do you mean they don't have answers about why the AVM developed, or about another aspect of your diagnosis or care?

I'd suggest you may be interested in checking out our Connect Neuropathy group https://connect.mayoclinic.org/group/neuropathy/. Regarding the changes in your sense of taste, I imagine that would make eating rather frustrating. I know that @keithwalker mentioned his daughter experienced loss of her sense of taste, and @tikigod18 mentioned his wife went through something similar. They may have some thoughts for you.

Also hoping members in this discussion like @levity @heather8900 @tanvir22 @stellgma @kariulrich and others will comment on whether they or their loved one with an AVM has dealt with any neuropathy or changes in sense of taste.

Have you now had your physical therapy assessment, @avmcbellar?

Hi, @lisalucier and @levity, thank you. Great to hear from you. Although I had the rupture of my AVM 2 years ago, I have been trying different supplements and treatments in hopes of finding improvement and relief. It has been a learning experience for me since my medical team has no answers. At the point of rupture of my AVM, 5 blood vessels were involved. The neuro medical team did not expect me to survive. I have been through an initial surgery to stop the bleed then 3 surgeries later for the embolizations to repair the AVM. During the last embolization, I developed neuropathy on left side of my body. I deal with the burning pain and extreme temperatures of my skin. It’s more prevalent on my left hip and leg. Did anyone find any relief for neuropathy? I also lost my taste to food 2 months after my AVM rupture. It has diminished slightly but I am still very sensitive to the sweetness in foods. I have learned which foods have a less overwhelming sweet taste and it has nothing to do with the carbohydrate count. Did anyone experience a change in taste with food?

Now, I only drink 1 or 2 cups of caffeinated tea daily and am happy to say I experience no headaches. What a relief! I haven’t iced my head in over 6 months. Later this week I will be starting outpatient therapy again after 1 and 1/2 years. Looking forward to the physical therapy assessment.

Hi, @avmcbellar - welcome to Mayo Clinic Connect. Good to hear you got some relief from the awful headaches following your AMV surgery.

Did you experience any other side effects of your surgery, @avmcbellar?

@levity - it sounds like you've been through a lot of therapy in your recovery following your AVM rupture and emergency surgery. How are things going with the head rushes and headaches?

Do you still suffer from tinitus? I had that as well. I consulted my neuro team doctors before starting supplements to help me. I was free of medications at that time and still am. At first I did research calling a few supplement companies before deciding to start Lion’s Mane Mushroom. I took it as directed on the bottle for 5 months then stopped. I saw no improvements until a few months later I realized I had no more tinitus in my right ear, completely gone. Last week I started the Lion’s Mane Mushroom again. Hope to see more improvements.

I had my last surgery almost 2 years ago and yes I got the awful headaches. I drank coffee on and off so not to get a caffeine headache. Even with drinking coffee, I had to deal with the migraines. I found myself using ice on my head as well. That seemed to help better. Recently I discovered by drinking black tea, a cup daily, diminished my headaches. No more coffee for me. Finally, I got the relief I needed from the migraines. Hope this helps.

I had an AVM rupture in the right parietal lobe of my brain 3/16/2014 and had to have emergency brain surgery to remove it. Dr. Ringer with the Mayfield Clinic here in Cincinnati, OH performed the 8 hour surgery. I remember about a total of 24 hours of the month I spent in the hospital. I had 9 months of outpatient OT, PT and speech therapies. The years leading up to the large rupture I had chronic ocular migraines with a kalidescope effect in left peripheral vision. And I also had meningitis 2 years prior; unbeknownst to me was probably a small bleed of the AVM. The long lasting and probably forever effects that I continue to have are chronic head rushes and headaches, tinitus, loss of peripheral vision on the left side, difficulty following words on a page, chronic anxiety and sensitivity to lights and noises. I still have aphasia, but have understanding family and friends. I am grateful I survived and have this amazing perspective now which I wish all could have without the near death experience! I have completely immersed myself into creating art now, currently ceramics on the potters wheel. I have a theory once it was removed the right side of my brain started to get better blood flow or something because I am completely compelled to create now, where previous to the tbi I thrived in interpersonal skills. I work full time from home doing sales and service for upscale retailers. I have to take frequent breaks to regroup, but, my employer is very understanding. I'm sure I'm leaving a lot of info out if anyone has questions let me know! ********* "My Beautiful Broken Brain" on netflix is an amazing self-made film of a woman who had an AVM rupture. I highly recommend watching. 💜

Hi, @stellgma - glad to hear from you and that you are doing well and not experiencing headaches. That is unfortunate the daily aspirin the doctor put you on is irritating your stomach.

You mentioned your primary care doctor put you on ranitidine (Zantac) now. Is that helping the nausea and stomach issues at all?

Hi! I’m doing well. No headaches, but my dr put me on 325 mg a day aspirin which seems to be irritating my stomach. A lot of nausea. 😖 He reduced it to 81mg at my brain angiogram on sept7, but still not better yet. My primary care Dr put me on Zantac 2x a day yesterday...hoping this helps! My 3rd lesion apparently is in a bone and is not using a brain vein to drain at this time so the surgeon will do an MRA in a year to check it.

Hi - some of you have mentioned arteriovenous malformations (AVMs), and I'm wondering how things are going. I'm sure others will benefit from hearing about your experiences.

@stellgma - have you continued to be pain free following your craniotomy? Do you know if you will be getting gamma knife radiation on the third lesion found in the surgery?

@tanvir22 - how is your brother doing?

@auldcelt - how are your headaches?