Hi everyone ! Jaclyn has lived with her AVM for 6 yrs now . She bled in Oct 2002, had 1 embolization, and so far 2 Gamma Knife treatments . Her AVM is inoperable due to the location . The dr’s are afraid they will damage good tissue if they do a craniatomy. For the most part she is doing well . She has a few restrictions but it still allowed to play soccer. The sport that she LOVES . Her last angiogram in 07 ( the day of her Gamma ) revealed that the AVM ‘ballooned’ out twice it’s original size and that they could only radiate 1/2 then and 1/2 in a year. This past year she’s been dealing with alot more headaches. This is also the 2nd time we found ourselves in the ER thinking of another bleed. So far no re bleed but something else is going on and I am worried . Last week she had severe pain in her neck along with a painful headache and very weak . The ER did a CAT scan only of her brain and all is fine . She’s still in bed right now but awoke this morning very weak again and the neck and back pain is back . I have a call into our pediatrician to find out what could be the problem . Anyone else out there have neck pain and the bottom of her spine hurts to touch…that scares me .
Her pediatrician probably won’t have the expertise to help much. I agree with Lianne - her neurologist is the best person to contact.
Wondering how Jaclyn is today? Did you find out any more info?
kim this is what confuses me jacylan and lukes avm are inoperable so i do not understand how she could have gamma knife would the radiation affect important parts of her brain?? Please help me to understand this as i am wondering if this could be an option for luke