Arteriovenous Malformation (AVM) Survivors and side effects

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. 💜

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.

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.

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?

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 - 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, 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.

This is my first post on Connect. I have an AVM that was recently discovered via an eye exam, confirmed via an MRI and then a brain angiogram. My AVM has not ruptured and I plan on having it fixed at Mayo’s in the future. Any ideas, recommendations, or thoughts from your experiences. Thank you and yes,I'm scared.

Welcome @mockinbrd we are happy to have you here, you are not alone. I know you will get a lot of insight and support in this group. I have a small AVM that was discovered several years ago that found while monitoring for my vascular disease. It was very scary when I was told... honestly at times, even though mine is small and has not changed significantly there is always an underlying fear. I believe it is a good to know so you can prevent future problems. I look forward to what others have to say and know I am thinking of you.

I have had change of taste in foods years ago, but it was not contributed to anything vascular. I thought maybe I was having a TIA as I having other strange symptoms. My neurological exam and work up were normal. Following this post. Thank you for sharing your experience.