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Retroflexed Odontoid Surgery


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Hi i'm a 18 year old male who has been suffering for almost 5 years now. I have a specific problem that I thought I could get ideas on because this site is related to the chiari/ POTs spectrum. Well It all started with headaches and me complaining I couldn't "think" when i was younger. Well I have POTs(diagnosed about a year and a half ago) and had just gotten a tethered cord surgery. My main problem which i want answers on is my memory/ thought process.

I Can't say the Abc's in my head without it straining. I'm always "subdued" and can't follow conversations much less have anything to say, like I don't have enough brainpower. I can't visualize anything and it strains my head to try to do so. I can't remember what i did yesterday. I don't react to any outer stimuli(example when watching a movie have no reaction) I don't have constant thoughts, judgements of people, or wonderings going on, like I have force to think. It's like my mental energy is so low and my head constricted. I also don't have any emotion really like I don't get sad or angry like that part of the brain doesn't register.I have a really tender scalp all the time with a dry head. I also can't speak up loud or yell(because it talkes up too much oxygen i guess) It just literally feels like my head is constricted at the neck and i'm not getting enough blood to my brain.

I was diagnosedwith a retroflexed odontoid and am in the process of scheduling surgery. I think the problem has to do with

circulation issues possibly caused by stenosis of the blood vessels in the neck area. My Doctor (Dr. Peter Rowe) is optimistic

about the surgery of the retroflexed odontoid but I wanted your opinion too and wanted to see if anyone could relate or had

ideas. This is like vascular dementia not brain fog and it has been like this from the beggining but has gotten steadily worse.

More info-

Forehead gets cold as well as hands

cold sweats

facial flushing alot

spotty hands

headaches 24/7

really deep thin veins

neck veins hurt as do temples

Scalp very tender and dry all the time

I know this might be hard to understand but I wanted to see if anyone could relate or has heard of this before. (Also yes i have been to the emergency room several times but as many of you probably know they don't do anything) I am seeing Dr. Henderson for the surgeries.

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Hola Michael~

I'm sorry, but your medical issues are out of my range of knowledge. I do want to welcome you to the Forum, though, and to all the support and information you can find here. Perhaps you could try to PM Maxine if you can figure out how....I would guess there are a few others out there with similar issues to yours, too. I can relate, in a way....what they think is causing my POTS and small fiber neuropathy and heart issues is a rare disease, too.

Take care of yourself and let us know how you're doing!

Cheers,

Jana

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