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Jennifer,
You raise a good point on bladder issues, I could consume quite a bit of water or liquids while up on my feet being active and never have to urinate. However, if I lay down for an hour during the afternoon, I will have to get up 3 to 4 times to go even though I did not even consume any water or liquids. I have never brought this symptom up yet, is this the expected bladder impact? One other unusual symptom is periodic sharp pain in my left eye, the eye Dr I see for annual exams could not find anything wrong, just prescribed some anti-inflammation drops. I had been wondering if it was nerve related too.
Unrelated I see an oncologist for MGUS, during my recent follow-up with him on October 4th, I asked his opinion about Cervical radio frequency ablation (RFA), although not his area of expertise he said from what he has heard and seen expect to see 60% to 65% success. I was even more concerned about RFA after I contacted the Orthopedic nurse for a follow up from my August 2023 visit. At that time, the orthopedic surgeon felt that I would benefit from pain injections at C5-6. When I mentioned the RFA procedure to the Orthopedic nurse last week, she highly recommended that I do not proceed with it. The nurse said they would review an MRI prior to scheduling my follow-up, but since it had been over a year since my last visit, I would need my PCP to order the MRIs. Can you even believe my PCP said no twice? I got the Pain management Dr doing the scheduled RFA to order them. I am heavily leaning towards postponing the RFA pending the Orthopedic Surgeon recommendation for the C5-6. I had been expecting to see the more severe impact at the C1-4. This is all beginning to make more sense now too, what has been dismissed in the past as peripheral neuropathy in hands and fingers is more likely from the C5-6 issues. One of the neurologists I had seen was leaning towards early stage Parkinsons due to what she felt was a noted weakness in my arms and a mild tremor in my hands and Small Fiber Neuropathy causing the dull burning ear pain. She was totally wrong. I am glad that I insisted on an updated MRI. Thank you for your input.
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@dstone501957 Consider how your spine shifts position between standing or laying down. The spinal cord floats inside fluid and has to shift like a rope inside a garden hose if you bend, that is.... except when the spinal cord is tethered by compression and there is no space left for the spinal fluid. There may be some instability causing a vertebrae to slip past another one that changes when you change position ( called listhesis). It could effectively make your spinal canal smaller because alignment of the "spinal canal hole" is offset, so it narrows the space. That also changes the amount of the pressure on the spinal cord. You must tell this to your spine surgeon about what changes these symptoms.
When my spinal canal was offset (by 2 mm), I had trouble emptying my bladder. I would get half done and it would stop, but I could force it to empty. You have retention until you lay down. It sounds like a more advanced condition to what I had. I was working with a PT who was realigning my spine, and she corrected those bladder issues and my walking with a limp until the next muscle spasm moved the vertebrae and started it up again. That is how I know it was related. I have no problems since my surgery. These problems can become permanent if permanent damage occurs. There was another member on here and his doctors were about to do a colostomy because of severe constipation issues. He didn't know it was spinal cord compression causing it. He was bad enough that he was wheelchair bound and could not walk. Since spine surgery, he began walking again and did not need a colostomy. He was about to go down the wrong path and then he talked to me. Surprise, he did have an un-diagnosed spine problem and I don't know why his doctors didn't question that possibility.
I don't know about your eye, but the optic nerves do not come out of the neck, they are under the brain at the base of the skull.
60% to 65% is not a good statistic for surgical success. With my TOS condition, there is surgery for it with that same statistic and the specialist recommended against it because it could make things worse. I think your orthopedic nurse is giving you good advice. Surgeons are very busy, so she has to get the doctor to look at your imaging around the schedule he already has doing surgery and appointments. You will need some patience, but I think you should have an answer soon about a next step. I am so glad you are reconsidering the ablations. A doctor told you they thought it was Parkinsons. I was told I could have MS, but there was no evidence on imaging of any of that. If they don't know, they take a guess. Arm weakness is related to spinal compression at C5/C6 and I also had that. You need a doctor who knows and does not guess. Do you see how easy it is to get a wrong diagnosis, and perhaps unnecessary treatment that could have an adverse effect? Knowledge is power.