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Looking for a bit of support


#1

Hello all,

I had an AVM removed from the left side of my brain in July, 1994. Hard to believe is been 24 years!

Here is a brief run down:
•I am now almost 41.
•I began having petit mal seizures when I was about 8. A couple times a month, my right hand would seize uncontrollably for a couple of minutes. Sometimes, I would be at softball practice & other times, I would just be showering or something else low key - they didn’t always happen when I was exercising or exerting energy.
•When I was 12-13, a petit mal started in my hand and moved up my arm and stopped at my shoulder. This, too, lasted for a couple minutes.
My parents took me to a dr. appt. He advised that we come back for testing, but we never made it back.
•At 15, I had a Grand Mal seizure at the first day of softball practice. An ambulance arrived & took me to ER. I was there for a few days while tests were run to diagnose the problem. After CT, MRI, EEG, etc., I was told that I had an AVM on the left side of my brain.
•I visited a neurosurgeon at USC who was not very sure of himself, and left me feeling uneasy.
•The 2nd neurosurgeon I saw worked out of Harborview & UW in Seattle, Wa. - “I can make you better…” - he left me feeling so much more comfortable, and we decided that he and his team would embolize - to shrink & then do surgery - to remove the tangled blood vessels.
•Between ‘93 - ‘94 (approx. 1 year), I had about 12 seizures. During this 12-14 months, I had serveral embolizations done - they would thread plastic & silk particles up a wire catheter to my brain through my femoral artery. This was done to block off as much blood flow as possible so that surgery could be done.
•July 18,1994 - surgery performed successfully! Thank God! I praise Him for an amazing neuron team! I was in the hospital, recovering, for 6 days & at youth camp the next week!
•I had one seizure in January 1995 (6 months later) - dr. said it was most likely due to some swelling still.
•We do not know if the AVM was a congenital problem or if it developed b/c I was hit with a baseball bat (I stood too close to the batter) on the left side of my face (got a black eye) when I was about 6-7.
•I have dealt with a lot of anxiety and, probably PTSD, since then. For the first 10 years after the surgery, I feared, daily, that I was going to have another seizure. Those feelings finally subsided - I believe through much prayer.
•Anxiety still comes and goes… sometimes it is so bad that it has turned into a full blown panic attack where I am shaking uncontrollably (100% NOT a seizure) & the thing that calms me down is a supplement called “Elevate” (amino acids) in 15-20 minutes.
•The anxiety is due to my fixation on very real & uncomfortable feelings I have in my body that have been happening, in some form or fashion, for decades. The more I focus on negative feelings, the worse the anxiety gets. I often worry that something bad is going to happen or that something more is going on than I know about. The uncomfortable feelings are mostly things such as repetitive movements (very strong urges - almost Tourette like): eye blinking, mouth, fingers, etc. I have not been diagnosed with T.S. or anything else. I have been told that I just have a very sensitive nervous system.
•At this point of my life, I have a very difficult time trusting that doctors have my best interest in mind. I am sure there is one out there, but I haven’t located yet.

•I guess I decided to write tonight because I feel so alone a lot of the time… These movements, nervousness and anxiety are so exhausting and such a weight to carry. I know that God is bigger than any and every mountain we will ever face & I definitely trust in Him & know that He still works miracles today. I will continue to press on & fight this battle. I am just curious - is anyone out there currently dealing with or has anyone dealt with anything similar or have a situation like mine?

Blessings to you… & thank you for reading &/or replying.


#2

Hello @Desere Wow you have been through a great deal and it is hard to trust and find a good team of doctors. I think it is easy to worry. I think you need to listen to your body . We need to build a good team that will listen to us. It is hard because no one can see our issue and our pain and because we look ok people think we are ok. I find keeping busy helps


#3

Desere, hello and welcome, so nice to have you with us, YES !! I totally understand, your describing me in more ways than one, this year is my 30th year post surgery, also left side, I too talked with USC but finally had surgery at UCI med center in Irvine, I did OK from 25 to 50, im now 54, but the last 4 years have been a real battle, I seem to be getting progressively worse and I’m back to pre surgery condition after all these years, I’m so glad you posted, this is such a difficult aliment to deal with, the one thing I have learned over the years is only avmer’s get avmer’s, I feel the same way about Dr’s and struggle with your same complaints, this has totally and completely controlled and run my life and I’m not able to do what I want but only what my head allows me to on any givin day, I live in constant perpetual pain and can’t remember the last time my head didn’t hurt, like you I grew up doing many different sports and being very active, also have taken my share of hits to the head, even concussions but turns out I was born with mine and since birth had a 2% chance a year of an anuerism, didn’t find out until outta the blue I had a grand mail seizure at 23, then the journey began, like you my best weapon has been faith and pray, so yes your not alone, take care, be strong and may the god lord bless and watch over you,


#4

Desere

It’s great to hear from you. Whenever it’s getting too much, this place is a good place to come.

I don’t have much to share with you, as I don’t have similar effects but I do know someone who has migraines and one of the aspects of their migraines is a sense of dread that creeps over them. They find it the more challenging aspect of their migraines. Having read some of the book Migraine by Oliver Sacks, I learnt that one of the identified aspects of migraine can be exactly as my friend has… a surge of that sense of dread. I mention it to you because it is possible (in my mind) that your anxiety could be similar. I hope that knowing things like that can be to do with the way in which something is reacting in your brain might make it justifiable to you… that it might be some reaction that’s going on, driven by effects from your AVM or embolization a, rather than some “real” cause.

I’ve spoken to my friend to help them justify how their migraines make them feel – that it is some induced thing rather than “real”. I’m not sure it always helps but for me would help me say to myself “this is false. It’s just something that a migraine-like action is making me feel. It doesn’t represent who I am or how I feel, just how some migraine thing is making me feel”.

I hope this might help a bit.

It’s good to share. You’re not alone.

Richard