I recently went to a new neurologist as I physically could not manage commuting in to NYC (see New Neurologist Visit). As a result, I had to have a new set of MRIs. I expected the usual “There’s been no change, blah, blah, blah.” Last year, my neurologist told me that but mentioned I had spinal arthritis, quite normal at my age. From the get go, Dr. F had said I might want to consider spinal surgery. My first thought, years ago, was pure, utter terror. I had a friend who on Thanksgiving Friday 1998, found a lump on his rib cage. He went to the ER that day and it was determined to be cancerous. Another lump was found on his spine. It was operated on. By 9 December, he was paralyzed. His funeral was Memorial Day weekend. When Dr. F broached the possibility again in 2017, she said it could possibly help but I would still have MS. My response to her was that I have been told that I am an ideal candidate for laser eye surgery. But…there’s always a but. I would still need to wear readers because of my over 40 year old eyes. What’s the point? Would my mobility change? I voted no.
Despite my expectations, the new doctor left a message that she wanted to review my test and MRIs. I had already received a call on the blood indicating that my B12 was a little high. I’ve had that before. The nurse also said my cholesterol was a bit high. This was unusual and mildly alarming. However, my husband’s was also high. Aha, we had made three batches of Pati Jinich’s homemade cookies in a week and a half. When I go off the rails, I do it definitively . The cookies are made with three and a half sticks of butter; in other words just about a pound and a tin of condensed milk. I actually thought Dr. M was calling about my urine test. I didn’t do it at the lab. The last time I did one was at my gyn NP’s as we were fairly certain I had a urinary tract infection. Hilarious is the word that comes to mind. Not to be too graphic but it was challenging to collect, not fall or spill. I also have bashful kidney or shy bladder. The lab was not happening. They gave me a specimen jar. Next, my husband would have to carry it it in. My middle initial is P usually for Perfick! But all too often Procrastinate. We finally got it together along with a little brown shopping bag for Tom to carry it in. LOL. I truly believed and feared that I had something urinary/renal going on. So, the phone call. My blood is as previously indicated. My urine is FINE! Really? Really. However, Dr. M tells me that I have spinal arthritis. Yes? But. I have badly herniated discs. There has been significant deterioration. I hear the words “spinal surgery”. I close down and tell her I have to discuss it with my husband. This is just graceful politeness. I always make up my own mind. I am known for consensus and collaboration but I always, always make up my own mind.
Technology is a wonderful thing or maybe not. Dr. M has said she will send me the report. However, there is a patient portal. I go on it and pull up the actual MRIs. They are so ugly and so not me. My philosophy has always been “I am very good at my job. I know it. I expect you to be very good at yours. You don’t know how to do mine and I don’t know how to do yours.” I used to argue with a friend of mine who wanted all the exact details. Why? Can you tell the doctor/hairdresser/dentist, “Wait, that’s not the right way!?” I do open the written report. I am good at words. I don’t like these. I pull a Scarlett O’Hara and “I’ll think about it tomorrow. Or next week.” The report actually makes a kind of sense. I have been deteriorating almost daily. No one wants to acknowledge it, including me but there it is. Spinal deterioration at least provides a rationale. This, then leads us to spinal surgery. Tom assures me that things have changed and it’s been almost 20 years since my friend had his. Laser surgery is now common. I read the report again. Basically, it says that there has been no additional demyelination; no increase in plaques. Actually, there has been no increase in plaques since this started. However, I have significant myelomalacia(new word!) and nerve impingement.
I am going to get a surgical opinion. I am terrified of it but what’s the worst outcome? I can barely walk now. My mother developed intense osteoarthritis and osteoporosis seemingly overnight. So, this diagnosis also makes sense in that light.
It’s always something. Once again, I find myself being my own care coordinator.
Has anyone else encountered spinal stenosis and had a positive surgical outcome? Or is this going to be like cataract surgery and because I’ve reached this state of deterioration, anything is an improvement?