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About jimnick

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  • Birthday 06/16/1963

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  1. Thanks to all for the input and for the contact info on Dr Heffez. I've not been online for a while due to computer problems. In the meantime, I did contact Dr. Heffez in Milwaukee and have an appointment to see him. Thanks Maxine for the heads up about EDS as a possible complicating factor in surgery. I'm not aware of having EDS. I am rather flexible and been told by one doctor I have slightly hyperextensible skin, but I can't say I meet any of the other criteria I've read about. I'm also very slender, but haven't determined if that is typical of EDS. Am I reading correctly that there is no definitive test for the hypermobility type of EDS? Jim
  2. Thanks all, for the comments and suggestions. I have been doing some research the past couple days. Yes, Doctorguest, I have had quite a bit of diagnostic workup, including MRIs and myelograms demonstrating the cervical stenosis (central and neuroforaminal at C5-6 and C6-7). I've had SSEP and EMG/NCV, indicating damage in the cervical cord and brainstem as well as C5-6 radiculopathy. I've also had an autonomic workup verifying the POTs and an adrenergic sudomotor deficit of the preganglionic type. In other words, the testing is demonstrating dysfunction in several areas (autonomic, sensory and motor), which was clear from the symptoms. The main concern is that, in addition to the POTS, the neuropathic symptoms (pain, sensory and motor deficits) have progressed at an accelerating pace over the 16 months since the original cervical surgery and have become increasingly sensitive to non-neutral head and neck positions. So, yes, I definitely think there's more going on than dysautonomia. If I could just get the neuropathic symptoms ameliorated, I would be in a much better position to rehabilitate myself and get some improvement in the POTS. I have always been an extremely active person and am a big believer in physical therapy. Thus I have diligently maintained a home physical therapy regimen (and was even swimming until March), but I have had compounding setbacks and am currently quite incapacitated. I am going to look into some type of manual physical therapy (as you suggested Emily), if I can get it arranged at home. Since my condition has progressed to such a state of incapacitation, despite my own rehab efforts, I feel I really must find a knowledgeable neurosurgeon who is not afraid to take on a complex, iatrogenic case (are there any out there?). On that note, I have done some more research on Dr. Heffez and have tried to contact his office over the past couple days. Strangely, no one is answering the phone there. Dr. Heffez Office I'd be appreciative of any additional suggestions on neurosurgeons or other advice or information that may be helpful. Jim
  3. Thanks Flop for the welcome and the suggestions. I have been through all of the DINET site and found the information helpful thus far. Jim
  4. Hi, I'm new to the forum and hoping for some insights and direction with my condition. I've had cervical degenerative disc disease for at least 10 years. The major problems began a few days after a cervical foraminotomy, when, along with POTS, I developed a progressive neuropathy (including numbness, burning pain, spasticity and weakness) affecting the left side of the face, head, neck shoulder and arm, as well as the right lower ribs and upper abdomen. Doctors are simply attributing all of the dysfunction to dysautonomia and telling me they can?t help. I suspect that the neuropathic symptoms (and maybe the POTS) may be progressing due to ongoing cervical spine pathology. While the tachycardia is only triggered by upright postures, the neuropathic symptoms are triggered by both upright posture and head and neck movement (especially flexion) even when lying flat. Has anyone else had or heard of these kind of problems? Can anyone shed any light on what may be going on here? Can anyone recommend a surgeon who understands the potential relationship between cervical spine pathology and dysautonomia? Any ideas and input would be appreciated. Thanks, Jim
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