Arteriovenous Malformation (AVM) Survivors and side effects

@avmcbellar -- I do the exercise while I'm watch shows I recorded the evening before or I turn the TV to a music channel and that seems to help with doing the exercise without too much boredom. I think it distracts the mind a little so I can exercise a little longer than I normally would.

Hello to all. Mockinbrd here. I've thought of those who post here and continue to lurk (lol). I find it comforting to think and read about you all. It's been just over a year since my craniotomy. I see improvements in many areas but unresolved challenges too. Oops. I need to run. I'll post more later. Nothing like a good phone call.

Hi, @mockinbrd - sounds like you had to go soon after your post, but it's good to hear from you. You are right that with every thread on Connect where members are posting, many more are not posting but following and reading. Glad that reading about others here in this AVM discussion is comforting to you.

When you get a moment, will you share more about in what areas you see improvements post-craniotomy and where you see unresolved challenges?

@johnbishop TV shows help a great deal to pass the time. I started doing the Sit and Be Fit workout. The 30 minute show seems to end quickly for me. Now, I continue the vestibular therapy for my motion sickness until I can eventually use the elliptical machine for exercise.

Hello. I came across this group as I was searching for information that might help me to understand why my daughter is having the migraine headaches she is having after radiation treatment on her AVM. She was initially diagnosed due to having complicated migraines or migraines with stroke-like symptoms. She would get them maybe 5 times a year. She gets the vision disturbances, numbness/tingling in the hand, arm and face and slurred speech. She will also get dizzy at times. She had her radiation treatment in April and on 6/15 she had one of her migraines with all the symptoms. This past Friday at midnight she had another one, again around midnight on Saturday and around 6pm Sunday and today around 6pm. We had a MRI done this evening and are suppose to meet with the neurologist and surgeon tomorrow to go over the test results. I am so worried and I can't help but to search the internet for answers. Anyone out there experienced the increased number of migraines like this?

Hi @bobbiejo13 I am sorry your daughter is going through the migraines. Did she have a ruptured AVM? I don’t understand the radiation treatment for an AVM. Was something else discovered? The outcome of deficits depends on the location of the AVM, in other words, what part of the brain the AVM affected. With my ruptured AVM I did get the awful migraines for which I received a prescription for a pain medication but I opted for Tylenol. The headaches came 3 times per week initially but a bag of ice on my head offered better relief. I found myself using ice on my head in order to sleep. I was told the headaches were part of the healing process. I could feel when my brain was making new connections. It occurred more often in the beginning. I too have visual disturbances. I do not get the migraines as often as I used to, maybe once every 10 days, but I wonder if the migraines are due to my diplopia. What kind of visual disturbances is your daughter experiencing? I did not get much information from my neuro ophthalmologist for treatment. Not much information was provided by my medical team of doctors because not much is known since there are not many survivors. Basically, I was left on my own to learn as I go through my experiences. Everyone is different but I will gladly help in any way I can. I strongly urge you to question each physician with what the plan of treatment is and why. After all, they are not the ones experiencing the awful deficits. How can they understand when there is not much information out there?

@bobbiejo13, I wanted to check back in with you. How was the appointment with the neurologist and surgeon? What did you learn? What are the next steps for your daughter?

Sorry for my delay in responding. The neurologist visit didn’t really give us much info other than they felt she may have had a tad bit of swelling but nothing to cause the episode of migraines she was having. They put her on about a weeks worth of steroids and this seemed to stop the cycle of the migraines every 24 hours. They didn’t rule out a break-through seizure. They switched up her meds but ended up putting her back on Keppra because the side effects of the new meds were too much for her. For now we are in a waiting period to see if the radiation treatment worked and keeping our fingers crossed she has no more side effects during this waiting period. It can take up to 2 years we are told and that they sometime see brain swelling issues around 6 months after treatment in which they can treat with steroids. October is her 6 month mark. Fingers crossed. 🤞🏻

Praying that the radiation treatments worked...with no side effects 🙏

Hi @bobbiejo13 Since my last conversation with you my headaches are now once a month. A member has recommended an herbal tea called “Shifa Turmeric Headache Relief Tea” by Shifa Naturals. It is a product available on Amazon or through their website. I haven’t tried it yet but will on my next onset. I am hoping for great results. I hope the Keppra offers help. I only took the medication for 2 months but with the side effects it was difficult to tell whether my symptoms were caused or exacerbated by the medication. I cringed when taking it. For me it was not a good drug. My doctor had agreed to wean me off the medication since I was a low risk for seizures. Wish you both well in finding answers. It is not easy. Toni