Well... that didn't go as planned......
I met with my new NS yesterday, and I started with the PA. After a review of my history she went over her impressions. She obviously confirmed the Chiari Malformation 1.5, but when we started talking about my concerns, I brought up the possibility of Cervicrainal Instability She was thorough, and responded very succinctly to my questions. She agreed that the angle and invasion of my otinoid process (OP) is a concern and that it could impact the recovery success of my decompression surgery. So, she asked permission to have their skull based surgeon (Dr. Gardner) review the images. Both he and Dr. Friedlander met with me after review and consultation.
Both surgeons agreed that attempting a decompression in it's traditional sense will fail if the congenital deformation of my skull base is not addressed. They did the medical "figure it out" thing right there on the screen, which was like watching an episode of house. And Dr. Friedlander stated that he could do a modified decompression surgery, removing less of the skull, to facilitate the need for the OP to be removed at a later date, and that this would provide some relief of the symptoms but that the could not identify for how long.
Dr. Garder described this procedure and answered my questions and concerns regarding this being done. He did say that it will require a cerviocrainal fusion of the C1-C4. This will reduce my neck mobility by 40-50% and will require some life style modifications.
By doing this they will address four things. The procedure will have a 3-4 month recovery period, and will require OT and PT during after care. He was very careful to address my major concern which was my previous NS's description of this surgery and the statement of morbidity (30%) that was made during his discussion. He stated that the trans-nasal approach has a 0% morbidity rate, especially in my age group.
It was a lot to take in and process. And they gave me the option to do either route. After talking to my family, my husband, and my therapist yesterday, I have committed to the bigger surgery one time, instead of the smaller surgery now, knowing it will fail. . . there are too many unknowns in that scenario. I am planning on surgery after the first of the year, as I don't want to ruin my kids Christmas and would like to enjoy this holiday season.
I am utterly terrified, I'm afraid of the surgery, I'm afraid of the recovery, and I'm afraid that the loss of mobility is going to really impact my ability to take care of my family, my job, and the things I enjoy doing. I have to look at the optimistic side of things, in that the surgeons (both top medical professionals) are confident that this will relieve about 95% of my current symptomology. www.ncbi.nlm.nih