I am definitely a frequent flyer for hospital stays. I listen enviously when I hear friends tell me that they've never broken a bone, ever had a surgery or hospital stay. I've had many of the above. So much so, that during this most recent two week stay, I had several nurses that remembered me from previous hospital stays. It was a friendly reunion that I believe got me better bedside service. Sweet.
My doctors suspect that it was my rheumatoid arthritis that degenerated my spine so severely. As you may recall, on September 24, I had emergency cervical spinal surgery because I had serious cervical spinal compression. I was left almost paralyzed. Three months later, in true Deborah fashion, I entered the ER December 26 and ended up with emergency thoracic spinal surgery!
At the time of my cervical surgery, my neurosurgeons told me that I would need to deal with my thoracic spinal compression 'next'. The MRI showed spinal compression there as well, but the cervical spinal compression was the most important to repair first. Neurosurgeons work from the top down. When the spine is injured, it is most important to repair the cervical first because it nourishes all the vertebrae below it. Then thoracic and then lumbar last.We thought that we had more time to plan treatment for my thoracic T10, T 11, T 12.
I have been suffering with back pain and inability to walk properly for sometime now. The cervical corpectomy and ACDF helped a lot but it mainly helped my hands. I was still wearing my prescribed neck brace when I showed up December 26 to the emergency room for my right side numbness.
I had an appointment January 8, 2025 with Dr S, my neurosurgeon, to go over surgical options for my thoracic spine; but I began losing more basic abilities at an accelerated rate in December, 2024. By December 23, the right side of my body from my mid back down was experiencing occasional numbness that would last for 20 minutes and then be OK. And my right leg would buckle with no notice. I contacted Dr S and his team and they moved up my appointment to December 27.
I wanted to get through Noche Buena (December 24th) and Christmas at home. I had been in close contact with Dr S's physician assistant (PA) by phone. He told me not to white knuckle it, trying to make it to my appointment on December 27. With any new symptoms I was to go to ER immediately. He agreed with me that pretty much the ER would just stabilize and keep me in observation until I saw neurosurgeons on the 26th. I planned to go to the ER early the 26th, as my right side numbness was extending into my groin area and was more constant
Upon entering the ER, I was immediately admitted to the hospital. I saw Dr S's PA and spoke with Dr S on the 27th. They were scheduling me for surgery the following day. It was a Saturday, so I was the only operation happening that day. It was weird to be wheeled into an OR so empty as many physicians were on holiday. My anesthesiologist had to serve as surgical assist (instead of the Neurosurgeon Fellow).
Dr S told me that this was a "major, major surgery". The spinal compression was so extensive that instead of a 1 - 2 inch scar; I ended up with a 6 inch incision. I awoke with a
wound VAC and two drains. I had a complication, called a dorsal dural bleb. As far as surgical complications go, I think having a "bleb" is so funny as that name conjures up a friendly, colorful, cartoon character. This is what I think a 'bleb' looks like.
Post op recovery was extremely painful, and despite having had numerous major operations, this was the first time I actually hallucinated. I told my nurse about it and she said "oh, that's the Dilaudid you were given post op that mixed with the anesthesia that was still in your system.”
My hallucination was innocuous and kind of funny. To understand it in context, I have to tell you its backstory. 9 hours earlier, my friend , DL, was trying to alleviate my pre-op anxiety and was talking about a cheesecake recipe he wanted to try. It was called orange cheesecake dump pie. It contains orange cake mix, two packages of cream cheese and piecrust, among other things. I said firmly "No way, anything with 'dump' in the title sounds yucky!" Now, I often shoot down DL's proposed dishes because he has a way more adventurous palate than me. Also, he eats healthier and chooses ingredients that I do not think taste good. This eating difference has been a source of hurt feelings for him and frustration for me. So he playfully teased me about not being open to new foods. When I was being wheeled into surgery and we had to say goodbye, I looked at him and said "Hey D, make the dump pie. I'll eat a slice." He looked at me and said "Aw, you do love me" and I gave him a full face smile. We had a moment. Nice memory.
So my first post-op night in the hospital, I was semi conscious in my hospital bed, when I repeatedly heard a woman saying "$27, 27$!" Painfully, I raised the head of my bed, and lo and behold, I see a woman sitting near my feet. She had lime green light emanating out of her. Kool. . . And she was talking to someone that wasn't there. She was very angry with the cheesecake she had paid $27 for. I told her that I thought she had gotten what is called a dump cheesecake pie, but she could not hear me. She was on an endless loop saying and doing the same thing. I was in so much pain and loopy that I went back to sleep. That was an added perk to my hospital stay.
I was in the hospital for two weeks and I want to give a shout out to all the wonderful healthcare providers that helped me. Much appreciation to the dedicated nurses and techs of three tower two. I was thrilled that one of the PAs to my Neurosurgeon was a young black woman and I told her that I was proud of her for being a young woman of color in such a demanding, male dominated field. She appreciated it. My two surgeons were men of color, and I'm sure I had transference of my father.
Of course there were a few healthcare workers that I felt should retire. They were jaded, exuded indifference, and brought in a black cloud every time they were in my room. But they were the minority.
This story about my second spinal surgery is pretty cut and dry. But know that the emotional challenges that brought me to this point, and that I am now facing, were and are profound. I feel I do not have the words to describe how I felt slowly losing the ability to use my hands and to move and walk. Not to mention the misery of constant pain.
The chronic back and leg pain started close to four years ago and got worse to where it was unbearable all 2024. My invisible spinal deterioration began to manifest outwardly visible in the last two years. Although living with chronic 24/7pain was the worst; dealing with living in a disabled body was a close second. I now have a long neurological rehab in order for me to regain as much of my abilities as I can. The road ahead is going to be fraught with other emotional ups and downs. No doubt I will write more about this later.
But for now, I am entering 2025 hopeful. Send me your good vibes.
