Severe Stenosis - Doc advises surgery

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!

@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.

Thanks Jennifer. One last observation...Post surgery, I have been 10x more emotional than before. I'm sentimental, weepy at times, I fight off feeling sorry for myself. I've come to appreciate I may be suffering from a sort of surgical PTSD. I haven't seen that in these discussions but I do believe PTSD is a possible diagnosis partly due to the impact my surgeries have had on my life...but the impact is slowly resolving and I have maintained (mostly) a sunny outlook for the future.

Thanks, Jennifer, for your unstinting contributions to these discussions. I think every spine patient would benefit from the contents.

@upstatephil I appreciate your honesty. When you can no longer do something because you can’t move the same way, it’s a loss and you grieve that loss. I have felt that before too. Everything changed. That’s OK. Sometimes the loss can force you out of your comfort zone and you look for new ways to see something.

A long time ago, I decided to live my life not placing blame on others or circumstances that affected me. Instead, I would make my own choices and be responsible for my success or failures.

Sometimes circumstances are that you are just in the wrong place at the wrong time and an injury happens that you didn’t see coming, and you couldn’t avoid it. It would be easy to blame the driver 5 cars behind me that caused the chain reaction collision that caused my whiplash and spine injury and stay angry. That is a choice that would cause a lot of stress for myself. Back then, I told myself I was going to be OK because I was too scared not to be OK. I was really afraid of what would happen if I had to have surgery and I had an HMO insurance policy at the time and my primary doctor never sent me to a specialist. I never considered that physical therapy may have helped and I was in new territory.

No one would choose to be a spine patient and go through some scary surgery and we do our best to heal our bodies with the choices we make. I prefer to always think of it that way. In this moment I can chose how I look at myself and the choices I make for my health care will also influence what my future choices will be. I didn’t ask to be a spine patient, but the lessons I have learned from it about facing fear are really valuable and I wish I could have known this when I was younger. Instead of running from a problem, I can now embrace it and deal with it so it doesn’t take over my life.

These days I have been painting a lot so I can enter art competitions, but also because it lets me focus on something positive rather than something I can’t change that is a personal loss for me. When I enter that “space” where creativity comes from, it is a sanctuary and I am immersed in creating and separated and distracted from what was bothering me. It’s my way of choosing what I want to think about and to be positive. It also gives me a great sense of accomplishment and yes, it is therapeutic and healing through art. It probably always has been my sanctuary instinctively and I can design my thinking any way that I want to respond to a difficult time. Sometimes that isn’t so easy, but each step can take me just a bit further until I can soar again over and above something that was dragging me down.

These very profound lessons in my life are also what brings me here to try to help others who are facing similar circumstances.

Jennifer

Such a lovely note. I'm impressed with your introspective appreciation of your life situation. I feel much as you in terms of accountability and not being distracted by events/outcomes/causations over which I have no control.

During my surgical journey I saw and experienced some very traumatizing (to me) things and I still struggle to compartmentalize those things, fully. A work in progress...

My equivalent of your wonderful artistic outlet may be in a decision to write more fully about my experiences with spine issues and what I've learned along the way. Doing so might be cathartic plus I love the idea I might be able to help others gain perspective for their spine issues. I am thinking of creating an outline ... I may ask to share it with you when the outline has some structure.

These conversations have been of inestimable help to me.

@upstatephil Phil, that's a wonderful idea. I did something like that too and you will benefit by writing and finding the connections. With my journey through spine surgery and all the twists and turns it took before I found surgeon who really would help me, I struggled with the fear and how to overcome it. So I also wrote about how I figured out where this fear had come from, how I coped with it, how I felt being dismissed by surgeons, and I deprogrammed it.

None of us are born with fear. I decided that if fear was learned, then I could unlearn it and break the grip it had on me. It is something we learn in our lives and our brain holds onto that very tightly because of our survival instincts, and it can run away with you very easily. This is why it is so amazing to me to have unraveled it and unlearned the fear pathways in my memory. I have been tested since my spine surgery with surgeries for a fractured ankle and oral surgery, and I flew through that fearlessly. I didn't ever think I could be that fearless person, but here I am.

Jennifer

I appreciate the encouragement. My motivation is multi-fold: (1) Catharsis for me. (2) Helping others who are facing the same complex decisions I have (and you). (3) Scratch m,y author-itch.

I'll let you know what I do. Step one is a detailed outline...

I had an Epic spinal fusion to fix previous fusion & beyond (first fusion they cut nerve to left leg! Still numb.
However, pain is my constant companion now & not on opioids either. Stenosis is very bad down to 7 mil in neck & new fracture in C 6-7 & T-3 nobody seems to care at Ortho Dr. anymore.
trying to send me to his Neurologist friend (again) who does nothing. I get ping ponged back & forth.
Depression is a real thing when you can’t enjoy life & do simple things like walking in the woods, or just walk my dog.

I feel for you. So sorry. I’d suggest you keep digging, switch your focus 100% to a neurosurgeon, and select the best facility you can find to help you get to the root of things.

Good luck!

@cbeasley
Do you have osteoporosis? Are you talking about a spine compression fracture? Is this something your doctors are helping you with?

I agree with Phil, that you need another opinion. I'm glad you have a dog. Pets do have a way of helping, don't they?

Jennifer