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.