Kathy Re:

[Guest guest]

I can't remember if I was a member of TSC, I may well have been because I've

been searching for answers for a very long time.

Yes I do sign most of my emails as Jules, that's what everyone calls me so I

might as well use it LOL

This is one thing I've told every Dr I've ever seen.

If they look at any of my records my story has remained the SAME. The pain

has remained the SAME, from the same source, in the same spot....but has gotten

worse in intensity.

I tell them that IF I were just out for attention and my story wasn't

working, wouldn't I have CHANGED my story by now to find one that worked?

That is how some of them thing, I've been called crazy, its 'in my head',

even had a few Drs think I was looking for drugs. (because a lot of people DO

con Drs so the innocent get lumped in with them from time to time)

I do have an appt soon with the SB clinic at UNC Chapel Hill (NC) and I'm

Praying I will finally get the answers I've been seeking for years.

I read my MRI report last night and it said " no signs of tethering " . I dont

know how to read an MRI but I do know how to read MY BODY and they are totally

missing something!

I'd bet money on tethering.

I also have a Schmorls node and I'm not able to find much information on

Schmorls node other than it can be brought on by trauma and a few other things.

I've had a lot of back trauma.

I also have a distinct pulling/stretching/painful sensation down into my

tailbone. Its enough to make me stop doing whatever it is I'm doing at the time

it pulls/stretches/causes pain.

Something as simple as shaving my legs will cause that pain.....(but I work

through the pain to shave my legs! LOL) Its very difficult.

I can't sit because of the pain there, I have to sit on my right hip which

causes even more pain. I cant sit straight up only reclined. (like driving I

have to recline my seat) I spend most of my time laying on my side or sitting

up but leaned to the right.....which I dont have to explain what that's doing

to my hip.

I havent decided if I will go through the detethering surgery if in fact its

confirmed. I will make that decision after great thought if its offered. I

have a lot of other problems going on with my back....but I think it is a

viable option for me at this point. I cant keep going on like this forever.

I'm not on morphine (Kadian)and muscle relaxers just to be able to walk and

to barely get through the day so I've found pain management since I posted

here last.

aka Jules.....whose still plugging along, waiting for answers....still

searching, not giving

up.

Hey

Just going through archives over the past few years (trying to organize them

into subjects for members to reference), and I came across, what I think at

least, are past emails from you under the name, Jules. The backstory matches

yours perfectly at least. If it hadn't been for your recent introduction I

don't think I would have thought twice about it. Were you a member of our list

previously? If so, welcome back and if not, oops...it's amazing and in my

opinion terrible, how similar this condition is with people. I've read others

stories and though instantly, wow if it wasn't for that one piece, that was my

beginning.

Kathy