Sorry its taken so long to write this update, but I needed a few days to recuperate and process all the information we got from the neurosurgeon. First of all, we really liked him as he was very thorough, clear and patient with us, laying out all of the issues, options and possible complications. The surgery he feels best for me at the moment, will involve taking a 2 section of bone from the back of my skull, cauterizing and shrinking the herniated tonsils (the part of my brain that has fallen into my spinal canal), then shaving down the first vertebrae (C1), all to make space for spinal fluid to flow properly. Before proceeding, he has ordered a few specialized MRIs that I cant get locally, to check for cranio-cervical instability, since the procedure could make my head and neck even more unstable. If the MRIs show instability, the procedure will change and I will have a 4 incision to do both the decompression described above and a head to neck fusion surgery. A two for one, if you will. He is also sending me to a geneticist, scheduled for 11/4 in NYC, to check for the connective tissue disorder, Ehlers-Danlos Syndrome (EDS), which could impact surgical decisions and how I heal. He wants to wait to see if the tethered cord that was spotted in my lower back MRI will resolve itself after all of this or if I will need to have more testing and tethered cord release surgery at a later date. As of now, I have no other dates, but was led to believe surgery will be done within the next month or two. Thank you for all your support and positivity through all of this. We have been so humbled to have so many Angels bless our lives. If you would like to make a donation to help us get through this, please follow the link... youcaring/medical-fundraiser/carrie-s-crowded-cranium/229876
Posted on: Fri, 17 Oct 2014 03:18:41 +0000
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