3rd time.....look out.....

[Guest guest]

Ok, I decided to try this ONE more time. If it doesn't go through

then that's it. I apologize in advance in case the fisrt two somehow

make it to the board. I was hoping to get some feedback BEFORE my

next therapy appointment but......i go in an couple hours.

Hello to all,

I hope everyone is doing ok, or at least the best possible. I

haven't posted but have been reading when able.

Life has simply been hell in every aspect. From the agruements

between what family I have left to my husband " s neck going out things

have been unreal.

About 10 days ago I started back to physical therapy, mainly my

idea. Now I'm beginning to think it was the wrong choice.

The therapist had heard of syringomyelia but not chiari except from

my other therapist that I had over a year ago. He had called this

guy because he had no clue what my Dx's meant and wanted to see if he

knew anything about it.

Well, they did their normal evaluation and suggested hot packs,

ultrasound, massage, limited stretches that didn't invlove the spine

and exercise in the pool. Ok, fine.

Monday was a bad pain day but I went and did what I could, never did

i complain. Tuesday was even worse. My low back has been giving me

alot of problems so i decided to say something to the therapist.

BIG BIG mistake. I'm not a whiner and was not saying I wanted to

stop therapy. When they started the massage i was told " oh your neck

doesn't feel to tight " end of massage on that area.

started on low back and 3 seconds later was told, " I don't want to

aggravate anything " done with that. Then the head guy comes in. He

had one big attitude going on.

First he has me do all these different movements to see what type

of pain it caused. Like side bending to the left makes the pain

worse across the low back adn around to the ribs.

Bending forward i can feel it more across the back but sends a

shooting pain to where my syrinx is at. He said my problem isn't

muscular and that my pain made no sense becasue it was different with

each movement.

Well, i'm sorry but that's the way it is. It's not that the pain

is not in the same spot, but that each movement may make one hurt

more than the other.

He acted as if he didn't want to bother with me and said that the

worst thing to do is to start therapy then stop. I never said I

wanted to stop. He acted as if I was making up the pain.

He then said " you know, your dx's are very unique, the syrinx and the

chiari or whatever it is. " " exercise is what you need to feel better. "

Well, I've been trying to walk, even let my son take a paper route so

I could walk with him. Problem is, half way through my feet go numb.

Another thing I noticed is when my heart rate goes up I get dizzy and

can feel this awful pressure in my head. The area where the syrinx

is at feels like there is a knife cutting right through it.

Thing is I'm afraid to say anything anymore. I'm trying to deal with

this but honestly i just don't know if it's worth it anymore. I had

to stop at my family docs to pick up a note for my son cause he was

sick and missed 2 days of school.

When I got there I just lost it. I talked with one of the nurses

briefly and left with orders for an MRI of the lumbar region. I KNOW

something is not right in that area. Just as I knew there was a

problem in the thorasic region (syrinx) I'm just tired of people

making me feel like I'm a nut case.

My family doc has been with me since the beginning and he knows my

frustration as well. But he too keeps nothing consistent. I think

he understands my pain and will give me pain meds with no problem. I

just get them set to a dosage that I CAN manage the pain and he turns

everything around.

Then maybe 4 weeks later gives me the meds and says they have to last

a month. Ok, BUT it was the same amount he gave me to last 10 days,

which is what he had been giving me for the last 4 months.

My condition hasn't changed for the better, if anything, is worse.

If he would just stay consistant it wouldn't look like I was taking

more when I'm not. Believe me, I'd give anything to throw ALL my

meds away.

Ok, I have a ton more i need to get out of my system but this is way

too long. I'm sorry, but I really needed to get this out. I have

absolutely no one at home except my hub and he is dealing with his

own pain right now.

Surgery for me at this time is not an option according to a so-called

specialist in Cleveland. If i went to NY my Ins would not cover it

and I'd have to go alone.

I have never in 10 yrs wanted so much to just give up and throw in

the towel and say that's it........I " M DONE

Tina (ohio)

chiari 6-8mm

syrinx T5-T8

ruptured disks C5-6

........MRI of lumbar Monday