2/17/19

I am writing from my hospital bed in Cleveland Clinic. When I saw my spine doctor on Thursday, he was not at all sure that he wanted to go forward with surgery yet. He felt that the L4-5 issue simply could not be responsible for the extreme weakness and pain I was experiencing. He suggested that the spondylolisthesis could have caused the pain but not the weakness. He thought perhaps it was my MS that was complicating the matter. I said I was sure it was not MS, neither from the past nor from a new lesion. He said my MRI’s simply did not justify the reaction I was having. I was disappointed because he wanted me to have an appointment with my MS neurologist and then get an epidural before considering surgery. Having worked my way through the Cleveland Clinic system since June to get to this point, the idea of more waiting was very frustrating.

Imagine my surprise when my surgeon called me on his cellphone Friday night after hours to say he had spoken to the neurologist himself. She had concurred it was not MS so he had rethought my issues. What made sense of the whole presentation, was that the stenosis at my neck was very bad. Even though the affect on my hands and arms was not yet a huge problem, the pictures of my neck vertebrae pressing on my spinal cord shows it is very bad. That could account for my balance problems, and the lower back and leg involvement as well. He asked me to get admitted into the hospital on Saturday for pre-op testing, and he’d operate on Monday. He arranged for me to just stay in the hospital Sunday so I wouldn’t have to travel painfully back and forth to Oberlin to come in again on Monday.

At 1:30 on Monday the 18th , I will have the procedure done. I passed all of my pre-op testing (you will be thrilled to know that my heart and lungs are in perfect shape) and now have all the information I can glean. The doctor will do a laminoplasty. This means he will open my neck from the back, cut open the lamina bones of four vertebrae, C3-C6, releasing my poor squished spinal cord from its bony prison. He will use the cut bones as a hinge, like a door, using screws put in place a new cover plate . It will take 3-4 hours, and I will remain in the hospital for at least a few days post-op. To make sure that I can breathe, I will be intubated while lying on my back for the procedure. That means a sore throat. My neck will also be quite sore and I will be on muscle relaxers to prevent painful spasming for some period of time.

There should be immediate relief when I wake up, but realistically, I suspect it will be months before I know how much my spinal cord can recover after years of bruising. I look forward to my rehabilitation at home in Kendal with the nurses and physical therapists I have come to know well after my eight months in Ohio. I look forward to working at exercises that can start to accumulate building strength once more. I am sure I can handle the new pain and discomfort that must accompany the post-surgical life. To know that the pain and reduced mobility is not chronic, but has the possibility of healing, changes the whole trajectory of living with this body that has suffered so much, for so long

All of it sounds perfectly doable. My body is still aging just like anyone else. But to consider the possibility of regaining any lost body function at this moment is a medical miracle. MS nerve damage has been intertwined with this stenosis for years. It is with much curiosity I anticipate what will be revealed as I heal.

7 thoughts on “Surprise

  1. Thinking of you today! I’m sure you’ll do great and recover quickly; your positive outlook is sure to supplement the skill of your surgeon. All the best and let us know how you are doing as soon as you are able.

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    1. Hey Jac, in short, the surgery went very well indeed. Right after I came out of post op I was already able to move my left leg significantly better. My freed spinal cord is searching , searching to inform what has been gradually silenced for many years. Most of my life, what has been tagged as MS, was the stenosis in my neck after all. Hard to tell how much I will regain as the nerves have been crushed for a long time. My PT today was astonished and delighted by what I could already do today, 3 days post op. I am in a LOT of pain, which is entirely normal. A doc on the spinal team said I have a very high threshold of pain considering the agony most people experience after laminoplasty. The pain level is also improving hour by hour. Moving from a 10 on the pain scale to 7 after pain meds. I am in skilled nursing care at Kendal for another week and a half before I move back to my sunshine room. I am doing my best to sit up more, and want to to sit in my recliner chair in this room tomorrow for at least one meal. I am t o dizzy yet and need to practice short standing bouts as much as I can.The pain won’t kill me even though it feels like it will. The biggest change is that my recovery moves towards positive change and doesn’t fall into the category of MS which moves only downhill. I will post more when can be summarized. That is a huge life changer. I will write more when my condition is less fluid. Can’t summarize things yet. xoJ

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  2. Hi Judi, Glad to hear your voice coming through the pain. You have been awesome given as much pain you’ve been in for years, lots of every minute meditation practice. It’s amazing to me that the source of your weakness was finally revealed. I’m cheering you on from across the ocean on the winds of our connection. much love always, Raechel

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