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Severe Stenosis - Doc advises surgery
Spine Health | Last Active: Jan 23 10:05pm | Replies (64)Comment receiving replies
Finally a chance to address Jennifer's questions...
1) I tried to follow a scientific process in deciding on surgery. I could see/feel the path I was on w/o surgery. I managed with core work and stretching for decades. But I started having quick-onset total leg numbness (multiple times a day) and I grew fearful of falling. Doing nothing was no longer an option. So I researched, had three consults with different docs - ortho, physiatrist, neuro surgeon, and discussed at length with a research scientist (not medical doc). I reached a point of adequate understanding the risks: (a) Doing nothing placed me at risk for a damaging fall and/or extended nerve pressure could create permanent nerve damage with no correction possible (wheel chair bound?). (b) Face and accept the risks of surgery (three for me). I felt the surgical risks were worth it.
2) Recovery: actual vs expectations. Recovery has been harder and slower than I expected. It's taken me a long time (and two different PT specialists) to appreciate the truism that bone recovery is probably a 9-12 month process and there's virtually nothing I can do to speed the body's own healing processes. More PT? Didn't help. Harder work on rehab? Can't speed the bone healing process. This dynamic has been very frustrating. As is the common outcome of what seems like 1.0 step forward followed by 0.9 steps backwards. Randomly. Maintaining a diary has helped me appreciate progress is being made - albeit slower than I'd hoped.
3) Would I do things differently in the future if more surgery is needed? That's for "future me" to contemplate. For now - it's all about regaining the strength and activity levels I seek. I didn't do the full-monty surgery (my neurosurgeon's words) as suggested. In the lumbar region - he wanted to do something like T11 - S1 full decompression and fusion. He thought the need was clear but I just couldn't imagine recovery from that! So we did L2-5 and I hope I can manage further spinal degradation w/o more surgery...
Somewhat in the rearview mirror (4-level cervical work 11 months ago and 4-level lumbar stuff 8 months ago) I would say this has been the greatest challenge - both mentally and physically - I've ever faced. There is nothing "simple" about this sort of work.
I'm always happy to share more if it assists integer in their decision process!
Replies to "Finally a chance to address Jennifer's questions... 1) I tried to follow a scientific process in..."
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@upstatephil Phil, that is a fantastic reply, so thank you! I hope I wasn't putting you on the spot too much by asking these questions, but I knew you would have an interesting perspective on this.
I think you were smart to be a bit conservative and do fewer operated levels than the "Full Monty". That could be addressed in the future if you felt more surgery would benefit you. I am glad that your surgeons gave you choices, and to me, that shows that the surgeon is listening to the patient's concerns. That is the kind of surgeon I want to see when I'm in a situation like this.
Recovery is slow. After all, you need to grow some new bone to fill a void and that takes time. If you break a bone, the doctor puts it back together and the parts are touching each other, so bridging that with new bone isn't traveling as far as a fusion in the spine where bone needs to fill a space the thickness of a disc that was removed. It just takes a lot longer than a typical fracture repair. With a fusion, if a donor bone disc is used, there are no bone cells in it. It is a mineral matrix excreted by the donor's bone cells, but it has been cleaned of cells and is a just a scaffold. With a fracture, putting that together is putting pieces together that are the matrix and the living bone cells within it, so it is primed to begin the repair. I remember being very tired after my single level fusion and sleeping a lot because my body was directing all my energy to healing. Phil's experience of having 2 major surgeries with multilevel fusions in less than a year is asking a lot of the body to do it's magic in healing.
My experience of a single level cervical fusion was it took 3-4 months for the bone to start to fuse, and by my own choice, I was in a cervical collar for all of that because I asked for a fusion without hardware. It took about 6 months for me to stop noticing that I had spine surgery. I was working on the tightness of the scar tissue with myofascial release with my physical therapist, and I still work on it because it periodically tightens up, and I can keep things moving better if I stretch. My motion with a singe level fused isn't very different than before surgery, so my experience is different than Phil's because of several levels he had fused in each of this surgeries.
If anyone else wanted to share their decision making process to go forward with spine surgery, please jump in. This is a valuable discussion. We're all different in what we need and how we recover.