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    • #25021
      Sherman Paskett
      Participant

      Has anyone else noticed a connection between trauma and an acceleration of their PD symptoms?

      Last year I had spinal surgery for something unrelated to PD (obviously) but that resulted in a step-wise increase in my PD symptoms. I can trace the increase to the exact hour the surgery was performed. We had to increase my C/L by 50% to compensate for the increase in duration and intensity of my tremor.

      To his credit, the surgeon warned me that “PD and spinal surgery don’t mix.” Okay, doc, but I do not handle agony well, either. I opted for surgery.

    • #25022
      Jeff Sutton
      Participant

      Interesting topic for me also, I had back surgery to release entrapped spinal cord on L2,3,4, and 5 and had no idea nor was I warned about possible escalation! Have been left to total use of a wheeled walker having blamed the surgery for the loss of back strength, leaving me walking like a hobbit and unable to stand up straight without assistance of walker.

    • #25026
      Sherman Paskett
      Participant

      Yikes! Jeff, that sounds terrible. My surgery was on L3-L4 with a laminectomy and partial discectomy. The doctor would not put in any metal to stabilize the area, saying that metal is bad for people with PD. But without the metal to stabilize the joint it feels weak and I live in fear of pinching that nerve again.

      Did a neurosurgion or an orthopedic surgeon do your operation?

    • #25052
      Douglas Savchenko
      Participant

      I had fusion at L2-L5 in December. Neurosurgeon told me the reason for Conflict between PD and hardware is that tremors tend to cause early fail. Back to topic I have had a horrible time with accelerated PD. I too now need a walker not just for stability but so I can rest every few minutes. I feel like I am wearing the weight bands they use in Physical Therapy but not just on my ankles.  Trying to work with Pain Neuro, PD Neuro and Neurosurgeon on why is what is also exhausting

       

    • #25064
      Sherman Paskett
      Participant

      @Douglas, I am sorry you are going through this. One thing I have done for the past 3+ years  is keep a record of symptoms I experience throughout the day. Every 15 minutes I am awake I make an entry in a spreadsheet for the intensity and type of symptom I feel, the dosage I receive, and food intake. I also track sleep quality. These records are very useful when it comes time to ask the neuro for a med adjustment. Before I started keeping these records it was hit or miss as to whether I would get the meds I needed or allowed to take  them when needed.d

      When I pinched that nerve between L3 and L4 I wanted to die, but I didn’t die and my PD symptoms die not change for the week before I went into surgery.

      Then, at 11AM, Sunday 10/4/21, as soon as I came out from under the anesthesia I had tremor at a higher intensity than I had felt before, and from that time forward the PD symptoms have gotten worse at more than double the rate prior to surgery.
      I am just starting my second medication adjustment this year. The first was from 6.5 C/L 25/100 per day to 9.5 per day. Today’s change takes it up from 9.5 to 11.5 per day. I have no clue when they decide to quit upping the meds and put me in for DBS, but I feel ready for it now.

      I am grateful I had the surgeon I did. He does the DBS implants at Barrows and happened to be in the hospital when I was there. He did not do a good job explaining the impact of spinal surgery on PD patients; all he told me was that PD and spinal surgery don’t mix, but that at least was a warning. I have gotten ueed to neuros being vague because often they simply cannot give a straight up answer to the questions I would like to have answered. They stay clear of answering any question that starts with when or how long: When will I die? How long until I cannot care for myself? When will I have to quit driving? … It sucks that we have to live with such uncertainty.

    • #25070
      Daniel Novak
      Participant

      Bones and muscles are easier to predict. Brain waves are very hard to predict. As a result, many of my PD issues are dictated by the brain, IE. A muscle knot in my neck that won’t go away because it’s brain generated, not muscular or structural issues.

       

      And yes, stress is willing to top two or three influencers of our symptoms and progression. Some doctors will say if you didn’t sleep, the mids don’t work. If you’re constipated, the meds don’t work. If you’re stressed, The meds don’t work. I find those all to be true for me.

    • #25071
      Daniel Novak
      Participant

      Bones and muscles are easier to predict. Brain waves are very hard to predict. As a result, many of my PD issues are dictated by the brain, IE. A muscle knot in my neck that won’t go away because it’s brain generated, not muscular or structural issues.

       

      And yes, stress is willing to top two or three influencers of our symptoms and progression. Some doctors will say if you didn’t sleep, the mids don’t work. If you’re constipated, the meds don’t work. If you’re stressed, The meds don’t work. I find those all to be true for me.

    • #25072
      Sherman Paskett
      Participant

      #Daniel: I spent 4 weeks in physical therapy to get a knot in my left shoulder to release. Yep, there is a lot of strangeness with PD and so much we don’t understand — and many of the doctors don’t, either. All the more reason we should be armed with knowledge about the disease we carry before we let a doctor who is less than an expert on the topic do anything to our bodies.

      @Douglas: If spinal surgery is one of those things that can advance the disease we should be informed before the surgery, not find out after. I really find it hard to believe that tremor would cause a spinal fusion to fail. For one thing, who is experiencing spinal tremor? Anyone out there? My tremor is in my foot, other people have it in their hands. How many people have core tremor?

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