Re: To All ,but especially Ann and Corina

[Guest guest]

Ann, I saw your post and just had to put in my 2cents worth! You are only

doing what this board is here for! We come here to cry and complain and to put

our fears, hopes, whatever, into words. Do not apologize! Just come here and

unload!

Sincerely,

Carole (the older one)

[Guest guest]

Corina,

Well said!

Carole the older

[Guest guest]

Oh, gee, , don't idealize me! I'm every bit as much a baby; I haven't

even had my first surgical opinion, and I'm scared to death of procedures

involving needles. I just keep reading everyone else's reports and putting it

off. Plus I'm not in much pain, so I have the luxury both of putting it off and

of sitting and writing posts.

We all have different ways of coping with the awfulness of this condition. Mine

is to exercise a lot, work on losing weight, and stay in touch with my " feisty "

friends, in hopes that some of you will be my support when/if my time comes (see

-- I'm still in denial about the inevitability of surgery!)

But thanks for the kind words, and for all that you've shared, especially on Dr.

Glazer. As fellow New Englanders I hope we do get to meet some time.

Sharon

To All ,but especially Ann and Corina

Ann - I also feel horrible that I don't post more often to offer

support to others, but to be quite frank, I just don't feel like I am

in any postion to do so. I read this MB almost everyday and am

grateful that others are always there for us. I think Sharon from NH

is a phenomenal person. She is always right there for any of us,

responding to everyone.

[Guest guest]

Hi , Corina (and everyone else),

I feel the same way as you lately. I've been devouring the recent

posts and wanting to reply many times, but neglected to because it's

somehow been too overwhelming. Today my son is home from school

mildly sick with a sore throat and headache, and even the thought of

making him a bowl of jello seems almost too much for me. Yesterday I

was once again talking to my physical therapist about how difficult I

am finding it to rehab from my hip replacement while suffering from

flatback syndrome (HARMS) and my other hip pain. I told her that I

wished there was someone like me so that I could compare myself to

know if I'm being too wimpy, feeling too sorry for myself. She

reminded me that since we don't personally know of anyone remotely

similar to me, that I just have to forge my own path and not worry

about it. I told her that she is one thing that keeps me from

falling in the ditch along the path! You ladies and men are the

other thing that keeps me on the path, and I am so grateful for all

your posts and all your honesty and support.

So here's some questions and comments I've been thinking about after

reading recent posts. I got scared after reading that some of you

still have tons of muscle pain even after revision. I don't get why

this is. I mean I keep thinking that because my sagittal balance is

way off now, my muscles overwork trying to keep me in balance and

thus are constantly inflamed or tired or whatever. But if the docs

can get the spine back in balance with the revision surgery, why do

the muscles still hurt? Is it because they were cut and re-attached

or what? And of course I'm scared that the revision either won't

help my neurological symptoms (wide variety of numbness) or will make

it worse or more painful. Speaking of which, my neurologist still

hasn't gotten back to me with the result of my recent cervical and

thoracic MRI. It took a lot for me to get up the courage to call him

weeks ago. I guess it's time to muster it again. Wish me luck....

That's the next thing. When I had my first MRI the docs were not

able to get a good picture of my lumbar spine because of the two

Harrington Rods. With the second MRI they didn't even bother

trying. I recently heard of a metal artifact reduction sequence

which can make the image better.

http://radiographics.rsnajnls.org/cgi/content/full/20/3/699

but haven't been been up to reading enough about it to even know if

such a thing is routinely used or if it's up and coming or what.

Does anyone know offhand? The thought of calling my hospital's MRI

dept. is pretty daunting.

On a nicer note, I am SOOOOO happy for Suzy Habibi. It's about time

life cut you a break!! And I want to wish all those with scheduled

surgeries the best of everything, and to those still researching and

screwing up the courage to call doctors, etc., keep plugging - you

can do it. And if you can do it, I guess I can do it!

Also, someone was asking about exercise balls during PT. Can't

remember if you already had your revision surgery. I haven't, but my

PT occasionally has me work on the ball to rehab my hip. I refused

to lay on my back on it, though. I sincerely was afraid that my neck

or head would break off my body or my spinal cord might explode or

something if I do that. At the very least I was pretty sure it would

cause me intense pain. I am curious to know what you do on the ball.

And I would like to encourage anyone who gets a vague answer from a

doc about how many Harrington Rod type revision surgeries he has done

to try, if possible, to get them to be more specific. There are

enough vagueties with this thing that the docs can't tell us. I

think we deserve any specifics that the docs can reasonably give us.

Obviously I don't expect an exact #, but a ballpark figure would be

nice.

Well I'm sure there were other things that I've been thinking, but I

can't remember them, and this post is way too long anyways, so I'll

sign off.

I think the more I write you all, the feistier I get. I think I'll

go call my neurologist. Take care everyone,

loriann