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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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04-21-2014, 09:40 PM | #1 | ||
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Junior Member
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Hello I am a 21 year old male with an odd problem that has caused much distress. Ever since I hit puberty I have had a problem with my head and neck where I feel every time I try to think or produce thoughts or visualizations my head hurts and I am unable to. My neck strains and my muscles tighten uncontrollably like I am literally straining to think of something that shouldn't be complicated. I was also hit around this time with other stuff but I want to focus on this. This happens all day everyday for the past 8 years. I have chronic headaches and neck pain at the back of my neck where the skull meets the neck. My head feels tender to the touch. Most of the time I am in a "resting" state where I don't feel like im doing much thinking. My cognition is ok according to the neuropych testing. My head feels lightheaded daily, not where I feel dizzy but where my head feels like air Like there is nothing in between my skull.
I have had a neck surgery about three years ago which was a craniocervical fusion of the c1 to c2 with minor decompression. This was for a retroflexed odontoid. So I have rods in my neck but the symptom i'm talking about has not dissipated. I was diagnosed with Postrual orthostatic Tachychardia syndrome because my blood pressure kept dropping when I stood up and heart rate increase. I am also chronically fatigued. I don't know what to do my doctor is baffled. I have had an mri/mrv/ct/xray/ and a Transcranial doppler (which came back abnormal for mild MCA stenosis but my doctor wasn't worried about it because he said the MRA was gold standard. I know this a weird symptom and you may ask yourself how can someone say "they cant think" when they talk and type this. But picture it as a kind of brain fog that you feel is because the base of your skull is compressed. Ive always visualized it as the blood vessels at the base of my neck being compressed and every time I try to think my neck strains and head because its trying to force blood up to my brain to complete the "complex" thought. Though it seems this is not the case because of the scans of course. Also take note that according to my Mri and the surgery my spinal cord is intact and impeccable. Anyway if anyone has any thought on the matter please share. thank you |
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04-26-2014, 03:54 PM | #2 | ||
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Legendary
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Hi,
OK, in one of your other posts you mention Ehlers-Danlos Syndrome and POTS. You also mentioned Basilar Invagination and Retroflexed Odontoid and mild MCA stenosis. You may want to check out or post over on Arnold Chiari Malformation & Syringomyelia Forum as there may be a few posts and links there that may be informative. The search feature here at NT can be used on specific forums or the whole forum - Can use use specific words or phrases e.g. Ehlers-Danlos Syndrome When you say your doctor is baffled, do you mean the doctor who performed the original surgery or do you mean your PCP? You wrote Quote:
Last edited by Lara; 04-26-2014 at 04:10 PM. |
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04-26-2014, 05:43 PM | #3 | ||
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Junior Member
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Quote:
The neck looks impeccable according to him recently post-surgery scan. I do not remember posting before but have found the last ones. |
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