Fw: many questions

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----- Forwarded Message ----

To: Rhiannon Phoenix

Sent: Thu, January 14, 2010 1:13:48 PM

Subject: Re: many questions

Hi Niccy,

I know before I had my tethered cord addressed and fusion skull to C6 that I

had horrific symtoms all over my body. Many in my chest and ribs, like you are

describing.I was never comfortable. I could barely eat,because I felt so much

pressure everywhere. When trying to sleep, I felt like I was going to explode,

because of the overall pressure.

Unfortunately, the fusion was done first in hopes of doing a reverse pull on the

spinal cord. This really backfired, and two weeks after the fusion I had the TC

released. It was much worse than they expected and was the cause of so many

symptoms.

To this day I wonder if I could have just had the TC release and no fusion. I

wish I would have insisted upon it before the fusion,but all discussions took

place on the operating table. Sorry I digress! Anyway the tethered cord was

believed to be my biggest problem! I can say that today.  I am free of much of

the symptoms that affected my ribs,chest,stomach etc... I wish I could say that

about the fusion. I have a tremendous amount of pressure and spsms in my neck,

shoulder and head.

Belly breathing is the proper way, so I have been told, too.

Good luck. I know it's a struggle everyday, but there is an answer out there for

you!! I am living proof of that. I know my daily life is not as wonderful

as what I had hoped it would be, but I am much better. I have to remind

myself of that. The knowledge and technology was not around for me 12 yrs ago

when I started my quest, but it is for you.

Best,

Maura

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To: CCI posting < >

Sent: Wed, January 13, 2010 7:21:14 PM

Subject: many questions

 

Hi everyone. Please bear with me as I may get all out of whack here, but I have

a bunch of questions... and I'm not sure they will end up in any sort of order.

So, hopefully I don't mess up all your minds trying to sort mine out so I can

hopefully get a few answers.

1. Does anyone get chest pains? These are very sharp and kind of burning pains.

It's not heartburn. I feel the same pain in my back at times too, though not

when I feel it in my chest.

2. Is it weird that I breathe more with my abdomen than I do with my chest? I've

been paying closer attention to the way things are with me and I've noticed that

I'm a belly breather. Does anyone else think this may be a problem, something I

should maybe worry about and discuss with my NS?

3. Does anyone ever feel like their body is solidifying? Right now all my joints

and muscles from the waist up feel like they're freezing in place. I'm stiff,

and it's painful. Heat isn't helping and there's not enough ice around to ice

myself from the waist up. It's hard to move. Just typing this makes me want to

cry because my fingers hurt so bad. But I have to ask these questions. I have to

know if anyone else ever feels any of these things I feel. I have no sensitive

pressure areas, so fibromyalgia is not the problem, though a rheumatologist

tried to say that is what's wrong. My NS didn't think that was it either. Does

MS cause this kind of stiffness and pain? I have a family history (though small)

of MS. I also have hypothyroidism (an autoimmune disorder). These both put me at

risk of developing MS. I've been tested and that test was negative (though I

think that neurologist just wanted to appease me and get me out of his hair.

plus, it wasn't the

best of ways to test for MS, so I'm still concerned).

Great, I lost the other questions I had. I hate having such a bad memory. Wow,

I'm glad I type fast or this message would have broken my stiff fingers. Lol.

Thanks to anyone that can give me any insight.

Niccy