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Guest Julia59

Hi Gayle,

I talked with Catherine today and I gave her my phone number also. My husband saw your post just as I was ready to call her. I got a new calling card so I thought I might call her instead of her using her long distance.

I've got a little mess going on, and now I have a possible new diagnosis, (functional cranial settling). The Doc thought my symptoms pointed in that direction. I'll need to do invasive cervical traction with screws put into my skull and then traction in bed during a two day hospital stay to see if I have it or not. Then after that----I'm afraid to guess. If you go to the web site on that, there's some pretty ugly stuff. It's just one more thing I DID NOT NEED ADDED TO THE MIX.

This is not a sure bet----it's just that my symptoms point in that direction. A lot of my problem is that brain stem involvement can be progressive if it doesn't get fixed. He belives the EDS plays a role in the cranial settling.

Take Care, and thanks for letting me know Catherine lost my number---I must have been reading your mind, because I picked up the phone right when my husband saw the post--LOL.

Julie :0)

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Julie,

Katherine said you called but I guess she wan't feeling too well. She's probably a good person for you to talk with beacause you have similar issues.

I'm sorry everything is so up in the air for you right now. When are you going to start the traction in the hospital? It would be easier if you could just get a definite answer as to what is going to help.

Keep us posted about how you do with the traction.

I go tomorrow for another C spine MRI. My neurologist is talking about surgery if my herniation and stenosis is worse. One day at a time. I'm not rusing into any surgery.

Take care and good luck with the traction.

GayleP

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Guest Julia59

Gayle,

I have know idea when i'll have the invasive traction. I'll be talking to the Doc on Monday. I was told to e-mail him on Monday to remind him to call me.

I have a lot of PAIN---more then I ever had----and headaches from ****. I was lucky before to escape the headaches. Now I know how all the other feels who get the headaches---from POTS and neck/chiari issues.

Mine is a splitting pain, across the back of my head. It hurts a lot with movement of any kind. Sitting, standing----any moving is difficult. I slouch like a 90 year old in my chair. I know this is bad posture, but the weakness has gotten terrible. This is not all the time, just after exerting myself from shopping, doing a few dishes, folding a load of laundry-----running errands. Just trying to survive as I am not able to get out much lately------the boredom is terrible.

I 'm rambling-----and I can't type any more................tahnks for your support.

I will certainly keep you posted and let you know what happens next week.

Julie :0)

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