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in reply to: Is this all myelopathy ? #27777
I don’t know if this is relevant but I am a person that forms copious amounts of scar tissue. I have an abdomen full and have had to be hospitalized many times with small bowel blockages due to the scar tissue. And my neurosurgeon had a horrible time when he went in to do my corpectomy. It took 8 1/2 hrs to do a 4 hr surgery. He said “ I’m a neurosurgeon and I nor my colleague ( he had to call him in to assist) have never seen this much scar tissue in the neck, even around the cord”. I also have a history of forming very large bone spurs. During that same surgery the spur was very large and growing into my cord, and had set up a rich blood supply so that each time they tried to chip away at it I bled profusely so I had to receive a transfusion. Don’t know if this helps or further confuses a complicated picture but thought I would share this info. Thanks
in reply to: Is this all myelopathy ? #27775Well I’m thouroughly confused now. I had my myelogram 3 days ago and my NS nurse called me today to say that it looked “ok”, don’t know what that means. She said he wanted to get me into a neurologist to evaluate my extremity symptoms. I can’t believe this! I have had myelopathy 4 times before and this sure seems like myelopathy to me. I’m having trouble holding my head up, it’s easier to just drop my head now,holding it up causes severe muscle strain and horrible head tremors. Still can’t stand but a few minutes because my legs are so weak they tremble. Feet are burning, have pins and needles here and there on my arms and hands, not constantly but happens enough. I get relief when I lay down. I know that there is a positional aspect to this. I sit with my head propped against a couple pillows and I think this is aggravating this. When I get up from this position my legs have that heavy feeling and so does the base of my neck and right under it.
Does this ring any bells for you? I am beside myself because I thought I was close to getting some relief. I told you I was concerned about the brief visit from my NS, didn’t do any neuro exam at all. Could these symptoms still be myelopathy from an area other than my neck such as upper thoracic? The corpectomy I had was C7 T1. Is there any guidance you can give me as far as what to discuss with the neurologist? I’m so afraid of being slipped into an “oh well” category. I’m not an expert at anything except my own body and I know there is something messing with my cord somewhere. Could this also be something that is positional and has to be diagnosed in a “ positional” manner. I won’t let my self be pushed off into a medical abyss with patronizing double talk( yes I have trust issues with the medical profession, I came from that field). My first episode of myelopathy lasted 3 months before I could get my GI doctor to listen to me when I was saying they needed to look at my spinal cord( was having horrible loss of bowel issues as well as weak heavy legs). I could go into my horror stories with myelopathy and dr’s not recognizing it but my point is I have never been wrong about this. Anything you could suggest would be greatly appreciated.
in reply to: Is this all myelopathy ? #27595Need to clarify/update my post from the other day. I did not mean to imply that my essential tremors were caused from my cervical problems because I know they are not. I meant to imply that they get significantly worse during times of cord compression, sometimes have trouble signing my name. The weakness in my hands and arms together with the now worse tremors make ordinary activities challenging at best.
When I referenced ear issues I should have clarified that I have no ear pain or reduced hearing. The intensity of sounds that I find irritating are not sounds outside of myself but rather my own voice( I’ll avoid the possible husband jokes here). I do have pressure and what I would call a constant not ringing but a very slightly perceptive “ noise” and when I talk it is amplified in my own head. I did not tell my NS about this because I thought I told him enough. I saw my primary care dr a few days ago for an already scheduled appointment and mentioned it to her so that she could check my ears. She found nothing out of the ordinary.
Symptoms are all still the same with some days a little better than others. I did experience left arm pain all day yesterday with pins and needles in that hand and some slight numb feeling in the thumb and index finger. No arm pain today at all. My tests aren’t scheduled until week after next. I know myelopathy can be a very “diffuse” problem but some of these on and off symptoms are driving me nuts. I am from a medical background and not one given to worrying about myself, on the contrary, I usually ignore things until I absolutely can’t any longer.
Still want to know if you could attribute all this to cervical myelopathy. I understand why my NS wanted a CT of the head but I’m sure I don’t have a brain tumor. So much of this is all too familiar but with some new twists. I don’t have a good feeling about this time. Oh yes, have had some loss of bowel control this which I’ve had much worse in an episode of cord compression before. Would you think that a CT myelogram would be the best way to diagnose this ? I hope so since this is what I’m having. Thank you in advance for your reply
in reply to: Is this all myelopathy ? #27540In the last paragraph that should say myelogram and not “ Kyle gram” as it does, auto speller I guess. I didn’t notice it until after I submitted it.
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