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Spinal Cord Disorders Message Board


Spinal Cord Disorders Board Index


Hi Marcia,
You don't know how much I appreciate talking with you. I read a few of your posts, we seem to be in the same boat, so to speak. I do belive the cavernoma is posterior dura, whatever that means. Can pin point the area, yet am not suppose to have pain there. Have lots of pain above it, around the base of skull, like a band to both ears.
Can post the mri in a few days, at moment, am having another whatcha callit. What do you call it, a flare-up? We tried a tiny small dose of my extra bp pills, and am still going through coming off of from last week. Boy did my feet swell, as well, put me into the condition, more, of feeling fluish. I don't so much have what one might call rushes, or the quick response feeling of a flush, but is as gradual as you might feel if you had air inside you veins, and it took that time to travel upward. Wow, that sounds strange. Kindof hard to explain, just feel lots of pressure, almost toward bursting.

This has been pretty much ignored or downplayed, am not in a good geographical area for the specialists. Neurosurgeon who I just saw is the most intelligient, and humane that I have seen so far. Others were quick, and treated me like I was dumb, even denied the MRI findings. Wow, how could that be, geez. Just have the wrong insurance, I guess. But so much for attitude. I have been able to weather through knowing what others have experienced, am sure you heard this all before, just had to get it out.

Docs are scared, I believe, to work with these things. And after years of suffering, though I am the one who is, I can understand them too.

What I wanted to know was do you get a flare up from different positioning of your body, like bending or reaching, does it bring on the symptoms, and any relation to blood pressure. I really want to get my bp under control. Convincing my PC, is that I need to see a specialist for this without first trying all kinds of different meds, is my problem. It is like I have to prove every symptom that I have with my docs. I wonder often if they think I am reading this stuff.

Was so upset, told her last time, that they should be spending every moment listening to these symptoms so they could learn more.

You must be a genius by now. But sure would be nice if we could just spend our time playing cards, reading more interesting works. Weird part, am from large family and they are showing signs, so similiar illnesses, that collagen defect seems to be the problem. Family is so big, a distant niece, if you can believe that, is the only one that I know of that has had cavernomas. But brother has AAA, stent in recent years, and has the weirdest MS that they have ever seen.
So tired of studying this, but is harder to get around the house anymore. Seldom go anywhere, anymore alone, and use the wheelchair most of the time when I do. Am only good a few minutes in any position or I become a pain show. Not a pretty sight, embarrassing, and really distracting at place that is trying to conduct business.
Shall try to get back with you with that MRI.
katey





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