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AVM Survivors Network

Hi everyone! I'm Sue and I'm new

Here’s my story. I was diagnosed in 2000 after I passed out in the bathroom while out to dinner. I was given 3 options due to it’s size and position in my brain. Gluing, cyberknife radiation, surgery (not really recommended for me) or do nothing. Since I had not had any other issues and I was told I might have had it from birth, my choice was to wait and see. Five years later, I was at the same neurosurgeon’s office and she asked me how my AVM treatment went. I told her I had opted to do nothing. At the time I was living in Fayetteville, NC. I had actually gone to see her because there was a qustion about having to have my hip replaced. I had recently gotten married and never mentioned to my husband the AVM, because I had not had any more problems. The doctor told him I needed to go to UNC Medical Center immediately and be treated. Well I opted to have my hip replaced first, because it was causing me pain. About 6 months post surgery we made my appointment at UNC and was scheduled for an angiogram (which did not go well). After consulting with the doctor and given my options of gluing, cyberknife or nothing. Surgery was not an option due to it’s size and postion in my brain. I had cyberknife radiation to try and shrink it so they could then operate. They said it would take about 5 years for it to shrink and then I should have another MRI. By this time we had moved to Wisconsin, so I made my 5 year appointment at UW Medical Center. I had started to develop the left side of my face and arm going numb for short periods of time. The new MRI showed NO shrinkage, so I was still in the same state. The doctors ran an EEG and said they thought my “episodes” were mini strokes. They told me to come back in 5 years for another check up. Back again at UW 5 years later, another MRI, episodes occuring more often and this time they said I was having mini seizures. No more space

Something else: I am retired and my husband and I enjoy camping with our 40 foot camper. We have grandchildren we absolutely adore. We enjoy going to baseball games, NASCAR races, football games and horse shows. We enjoy the retired life.

Sue

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Welcome to our group Sue! I would love to hear the rest of the story! It sounds like it has dragged on for some time,. I had gamma knife and the waiting can be challenging and mine was only two year. I can’t imagine 10 plus. Its great you’re here with us. I camped in Wisconsin once at Chipmunks Hollow in Wascott, and met some incredible people, only one night as I was passing through but had a great time. I plan on a trip to Madison this September from Manitoba. Thanks for joining, and Take Care, John.

Welcome to the family Sue and I am sure if you have any questions about your AVM someone here will definately be able to assist… God bless!

I think the hardest part of it all is hearing over and over from different doctors that there is nothing they can do for me. I have now had numbness in the left side of my face for a week, which I feel sure I had a mini stroke this time, with what might be some permanent damage. I don’t see the need for going to the doctors since there have been no changes in the week. I have just learned to adjust to what this is going to bring into my life and do the best with it. Has anyone tried CBD oils to see if it helps them at all. My daughter wants me to try it because it has helped her tremendously with her headaches.

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The research and reported results for CBD related products is quite extensive and in many cases really positive. I know a few folks here are using some products and hopefully they will chime in. I know a number of folks that there lives have been changed by managing pain that was previously difficult to manage. There is so many varieties I know little about but do have a friend that tried everything and the only success was CBD, that included opiod based. He found the results and minimal side effects really worked for him. Take Care, John.

Hey Q, (Makes me think of James Bond movies…)

Your post made me smile. My mom pestered me (really no other nice word for it - she’s almost 82, I’m 54) to try the CBD oil. She even went so far as to buy a bottle and have it sent to my house. How’s a nice way to say it - I have three medical people in my family. My mom ain’t one of them.

Finally, we got so sick of her bugging me that we finally tried it. The only impact it had on me was that it messed with my tastebuds.

Personally, I think there are some situations where it does make sense. This particular AVM saw no changes at all.

TJ

@QHraiser Hello Sue Welcome to the group.
I have tried CBD
My story started in 2011 first with a rare stroke CVST due to 5 blood clots in my brain- went into a coma had paralysis on the left side and brain damage.
Then developed my AVM - DAVF a few months later .
My stroke caused pain and my first embolism I had another small stroke causing more pain.
I’m 2014 I finally tried medically marijuana.
Just by chance my mm dr was a neurologist.
She said to try a bunch of things to see what would work for me.
So far I find gummies, tinctures and topicals work best for me.
After being on the, for a year my thalamus which was “Dead was back and my scans show no signs of stroke.

I recently had a 5 day inpatient Ketamine IV infusion which really helped my head pain.
My pain neurologist gave me a script for oral Ketamine and I am awaiting outpatient IV infusion of ketamine.

Angela

I am finding some CBD’s are giving me headaches and have not found one that is helping with my pain yet.

Hi Sue. Welcome to the site. I’m in the UK but was born with an AVM like most other members here. It didn’t show itself until puberty though when I developed hydrocephalus as a direct result of its position (Cerebellum). What an awful time you have been through and how worrying to have mini strokes. I had what doctors refer to as a ‘stroke mimic’ in 2016 but other than that my only hospitalisation has been for my hydrocephalus (various revisions of my Shunt), I suffer very little by way of daily symptoms and mostly because of that have adopted a ‘wait and see’ approach as advised by my neurosurgeon. I guess that only time will tell is this is the right decision. Lulu x

Thanks Lulu1. I am still trying to decide whether to mention any of the new symptoms to my doctor. I have now begun a new symptom. I was eating dinner and without any warning my left hand stopped working and was stuck in a contorted position. Very hard to explain. Then 2 days ago it started again in my left hand and then also affected my right hand. First time my right side has ever been effected, which is because where my AVM is it should only be affecting my left side. I am just going to keep on trucking on I guess and enjoy when I am symptom free.