Guest Julia59 Posted October 24, 2005 Report Share Posted October 24, 2005 WEll---how do I begin? I liked the neurosurgeon---he seems like he know his business---no doubt to that. But I still think the other two --Dr. Heffez and Dr. Bolognese know thiers...I am confused as this latest appointment was somewhat of a mixed bag. He was not dismissive. He thought my cervical spine stenosis did not warrent surgery, and he thought I did not have significant cervical/cranial instability.My neurological testing was positive in some area's and negative in others. I felt that they were testing me to see if I was faking---I'll find out when I get MY COPY of the report. He felt a lot of my symptoms were more related to CFS---and fibromyalgia----once again an easy lable to put on the whole mess.I told him that I was happy that he thought I didn't need surgery, but I also said I am very concerned about the instability because I can literally feel it, and my neck slips a lot lately---SIDEWAYS TOO--EWE. He told me it might feel that it is slipping---when in reality it might not be. In other words---maybe I imagine it----HMMMM- I don't think this could be imagined---and if it is, I have quite an imagination---and could quite possibly be a little disturbed. Maybe he wasn't implying that at all-----it just sounds a little off.I also told him about the swishing sounds I hear, and my sore ears---and the fullness I feel in them all the time. Of course the weakness in the arms and legs-----and how my walking has been affected, like i'm walking in mud----I don't think this could be realted to CFS---or the POTS. I know with POTS we can get weak----this is a little different then the weakness I experienced from my POTS.He wants to order a bone scan to make sure my fusions have healed correctly, and he is also ording another MRI on my thoracic spine because of the hyper reflexes in my legs. He thinks the EDS may cause some possible instability there---Hmmmmm. Also, he ordered a flexation/extension X-Ray to double check for instability. Then he wants me to see a CFS specialist at The Cleveland Clinic because he is thinking my neurological problems may be more related to something systematic.I'm on the same page as he is regarding the surgery. I think it should be a last resort until all other measures are exausted. However, Dr. Heffez believes I have myelopathy developing due to the stenosis---and believes surgery is warrented sooner then later. I guess i'll take a chance for now and wait things out for a while and see what happens.I'll see what his notes say------------then I will take it from there.I'm frustrated----and depressed. I could not sleep at all last night---my neck was killing me. It was so bad I thought I would be rolled in for surgery today----I could not hold my head up. It is feeling a little better now------but in no way do I feel at ease about the whole thing. Last night I started to feel panicked----my heart was racing, and the BBs were not working...finally it passed---but no sleep---- My SSDI will probably be screwed up as it seems I have doctors who have different opinions on my neck/cranial issues. not being able to hold my head up very long is one clue that this in not going away any time soon.It would be nice if this was fibromyalgia---then if they fixed that--no more neck/cranial issues. But my gut tells me I have the on going problems----because I can feel it every day----it feels very unstable. Just typing this makes my neck slip....God you guys have to be sick of hearing me whine about this.... I sound like I can't make up my mind on what's wrong.Frankly---I just want to go to bed and stay there-----it's just too much for me mentally..................................Julie Quote Link to comment Share on other sites More sharing options...
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