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Locking C1 and C2 to stop the progression into my brainstem

Posted by day0718 @day0718, Oct 27 5:48pm

I am a 70 year old female looking at extensive surgery to fix C1 and C2 from progressing into my brainstem. Based on the condition of my spine, I may lose rotation of my head. This in itself is troublesome to me, like if I can rotate my head, how can I drive, among other concerns. That being said, if I don't have this surgery to stop the progression into my brainstem, I may lose use of my arms and legs and finally become bedridden. There is no telling how fast this may progress. It could possibly take years or happen faster. There are other issues with my spine. The plan call for posterior occiput to T1 fusion with possible extension, C2-C6 decompressive laminectomy. I do not have pain in my back at all. The pain I feel is on the right side of my neck with pain in my ear as well. I am afraid with this surgery I will develop back pain when I do not have it now. Of course, I do not like the possible alternative to not having the surgery. The main goal is to stop the progression into my brain stem. Has anyone had this issue and if so, was the surgery a success. Thanks for listening.

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Jennifer, Volunteer Mentor | @jenniferhunter | Nov 15 11:44am
In reply to @day0718 "Well, I postponed by surgery. I approached University of Florida for an evaluation. This first appointment..." + (show)
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Well, I postponed by surgery. I approached University of Florida for an evaluation. This first appointment I can get for just an evaluation is in July 2026! I am concerned about that as my surgeon at Mayo in Jacksonville felt I should get the operation sooner than later before any more damage is done. I did speak with him a few days before the surgery and he understood my hesitation and the need for another opinion. He reviewed all my tests once again and stated he can handle C1 and C2 differently so that it would not be such a physical challenge. In that, it was good news. I have a video conference the beginning of December with the surgeon. I did some research and there is another neurosurgeon at Mayo that also has extensive experience at the C1 and C2 level. I am going to try to get an evaluation with him. As for the rest of the surgery, I am looking at posterior occiput to T1 fusion with possible extension, C2-C6 decompressive laminectomy. None of it is a cake walk. The surgeon extensively talked about all the possible risks with such a surgery. If I don't have this surgery, there is a possibility of paralysis. There really isn't a good choice in this situation.

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@day0718 You are doing the right thing in asking specific questions. Your surgeon is right about the risks you are facing now prior to surgery. I know it is a tough decision. I kind of felt the same way prior to my spine surgery and I was facing some spinal cord compression at one level and I had a lot of fear about surgery. I worked through my fear and I knew the earlier the better as far as the success of the outcome would be. My surgery was relatively simple, but my fear was off the charts. Working through all of that changed my life for the better and I have no regrets. Every patient and case is different and it always is a big decision. I hope you get your second opinion soon. Waiting until summer next year doesn’t sound so good. Is there another place to seek the second opinion, perhaps at Mayo as you mentioned? You really will be in good hands at Mayo. All of my surgeons there have been excellent for spine and for my ankle fracture.

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day0718 | @day0718 | Nov 16 5:26pm
In reply to @jenniferhunter "@day0718 You are doing the right thing in asking specific questions. Your surgeon is right about..." + (show)
Profile picture for Jennifer, Volunteer Mentor @jenniferhunter

@day0718 You are doing the right thing in asking specific questions. Your surgeon is right about the risks you are facing now prior to surgery. I know it is a tough decision. I kind of felt the same way prior to my spine surgery and I was facing some spinal cord compression at one level and I had a lot of fear about surgery. I worked through my fear and I knew the earlier the better as far as the success of the outcome would be. My surgery was relatively simple, but my fear was off the charts. Working through all of that changed my life for the better and I have no regrets. Every patient and case is different and it always is a big decision. I hope you get your second opinion soon. Waiting until summer next year doesn’t sound so good. Is there another place to seek the second opinion, perhaps at Mayo as you mentioned? You really will be in good hands at Mayo. All of my surgeons there have been excellent for spine and for my ankle fracture.

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@jenniferhunter
Yes, I am looking forward to the zoom call with the surgeon. I so want to get this behind me. I have accepted the fact I might lose some movement/rotation of my head. I will just have to make changes to adjust to the new reality. It surely beats the alternative. I feel I am blessed being able to go to a hospital such as Mayo. I will post my outcome with the discussion with the surgeon and if I get anywhere with University of Florida hospital. Thanks, Debbie

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