Tomorrow we are finally meeting with the neurosurgeon, Dr. Bejjani. I know he is well cited for his work with ACM, but I feel like I need to know what questions to ask, and am feeling ill prepared. My daughter is very symptomatic, and no one has told us any details about the ACM1 (mm, levels of hernaition etc). I hope to find all those answers tomorow. She is 16, and feels as if her life has just been invaded by a body snatcher. I cant imagine what this feels like, only that I watch her as a mother, and all of the puzzle pieces are fitting. The prospect of brain surgery is scary, yet the prosepct of her not finding relief is just as scary.
I would appreciate any insight on questions to ask Dr. Bejjani, so we can feel like we are not missing any opportunity, so my daughter can find some kind of relief or answers.
Thanks! I did find that resource page while I was looking. The appointment went well, I feel we were informed and empowered. Dr. Bejjani said her hernaition is 8mm, and compromising the CSF . He basically talked as if the decompression was routine and they could get her in as early as Monday! Since she has major symptoms which are worse during her period(due to water retention and swelling), surgery would be better while she is young and resiliant. She could go on untreted, and she would just be misearable. He seemed to think once the decompression(with a titanium plate) she would be able to be normal, with no restrictions ( after 6 weeks of healing). So we decided to schedule the surgery for November 7th. I am now trying to really find out about post op...restrictions, helpful hints etc.
This is a surreal moment for me, as mother...and for her...facing brain surgery. As routine as Dr. Bejjani made it sound, it is brain surgery. I know he is one of the best....and am fully confident in his ability. He even showed us the films, and the video and explanation of the surgery. *sigh*....At least we have a plan.....
It does feel better, yet scary. As a mother I am second guessing everything. I know she has to have this to have a quality of life, but…its brain surgery. She has suffered so long…I am trying so hard to be optimistic about it and of course cannot show her any doubt.