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The results of my visit:

Saturday, November 14, 2020

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
.gov/pmc/articles/PMC3037100/
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Member Comments About This Blog Post
  • JANIEWWJD
    Surgery is always scary, but know that our Lord will see you through this!!! emoticon I will keep you and your family in prayer!!! emoticon
    98 days ago
  • SPARKUVU
    Surgery is always a BIG decision, but it does sound like the odds are highly in your favor--but doesn't take the terror away! Best of luck on whatever you decide. The Rowdies aren't gonna let you off the hook tho--you may have to sit out Winter 2021, but we'll be watching for your rejoin for Spring (doesn't that word make you smile) 2021!
    102 days ago
  • BE-THE-CHANGE
    I know this can all be very scary. You need to try to take it one step at a time. From an earlier blog, it sounds like this has already impacted your ability to do things. It sounds like the doctors are very confident you will have relief after the surgery, so this is a good thing. The doctors also sound very confident that things will go with the surgery, so another positive for the surgery.

    The recovery will most likely be tough, but you will have a lot of support with OT and PT. I am sure your husband and family will also be very supportive. You do have to give yourself time to recover and ask for help when you need it. Tough sometimes, but not scary.

    I am sure the mobility issues will resolve over time. You will overcome some of the with PT and OT. With others, you will have to figure out different ways to do things. But I am sure you can do it, especially once most of your current symptoms are gone.

    You can do this. Come here to vent when it seems like it's too much and then get back to work. We are here for you.

    emoticon
    102 days ago
  • CHERYLSCOTT54
    There is one person you did not mention to take this problem to. You and your family needs to take this to JESUS; remember HE is the great healer. I pray HE will be with you and your family.
    103 days ago
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