Re: Back from the Hospital

October 20, 2001

At 1:20 PM -0700 10/17/01, hogganclan wrote:

>Sometimes life just does not go the way we wish. We have just

>returned from the children's hospital, and Mandy did not get the

>best of news. THere is NO WAY another back surgery can repair any

>of her pinched nerves and tightness in her back. THey have already

>done the maximum amount of work one can do with a back. She is on

>the strongest pain and muscle relaxers as she can. Bottom line, it

>won't be much longer before she is in a wheelchair permanently.

>Mandy is 'r-e-a-l-l-y down! Her left leg turns way in now and she

>bends more and more forward, until nighttime she is really bad. Have

>others faced this situation? If so, please share with us. -THe

>Hogganclan

I'm not sure what exactly is pinching (where) but let me at least

offer what I've gone through. I have a couple of fused disk (I have

spina bif. occulta ...spelling???), stenosis, a couple disk that look

like wedges and several bone spurs along with compression. There is

also evidence of a hairline fracture that either I 'grew into' or

did. I've also had a terrible case of thoracic nerve pinch (neck,

shoulder, arms).

My only saving grace has been

1. Doing stomach crunches (I could only bring my head up about 1/4

inch when I started) to strengthen my stomach muscles to support my

spine better.

2. I use a theraball, which again works the muscles to support my

back, keeping the bone spurs and compression " away " from the spinal

nerves.

a. I use one smaller ball to do " mobility " type of exercise.

This is like the hula and also it is very comfortable to sit on.

b. I use a larger ball to actually lay across to open up my

spine a bit. I have a curve at the top of my spine, but also a

terrible saddle back curve. My bum curves up terrible, which puts an

incredible amount of pressure on the nerves running through my lumbar

region of the back. Laying on the ball lets me do that " raised cat "

kind of position, without me having to support my own weight (on my

hands and feet). I have to say this has helped me immensely. When I

start getting pinch going down my leg I lay on that ball for about 2

minutes about three times a day and the pinch starts relieving

itself. Intellectually I know how it works, but having something so

simple, relieving something I had a terrible time doing prior...well

it's kind of like a miracle.

3. I do see a chiropractor, which I understand is not for everyone.

When I had no place else to turn (drugs and wheelchair was my future

too) I worked a program with this doctor. He is a particular type of

chiropractor (there are two schools of medicine) and he uses a lot of

massage therapy.

4. Massage therapy has been wonderful to work out the muscle knots

(painful in itself) and has helped me get by.

5. With my neck issues, I've had to stretch those muscles and do

some isometric exercises (like holding your hand on the side of your

head and pressing into it) to support my neck better.

Basically, what has been helping is getting the muscles to support

the bones better, so that they have just a wee bit more room for the

nerves to move. Remember though that nerve damage, if it does heal,

heals at a rate of about 1/8 of inch each day. That, is a long time.

It has taken me sometimes three months to start feeling substantial

relief. All the while we are in pain. The exercises hurt,

everything hurts. And it's hard to stay with it because you think it

is not helping.

Now, this is not to say I never have set backs. I do and sometimes

they last for a month. But, I can honestly say in the past four

years I have never have been as bad as I initially was before the

program I am now in.

Every person is so different and as I say I don't know where the

nerve is being pinched. I do know it's awful and as a parent this

must rip you up inside.

I don't know if any of this helps, but sometimes there is a little of

glimmer of something that might be tried.

Meantime, I'll keep a prayer going....

Ginny

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In God's Love & PeaceÝ

This is a Day of New Beginnings!

Ginny Sargent

mailto:chriss@...

ICQ#15679307

Artist-Designer

Sand Dollar Bay Designs

Live one day at a time and make it a masterpiece!

" Art is a collaboration between God and the artist, and the less the

artist does the better. " Andre Gide

December 30, 2002

Hello Debby !

I'm glad to hear that you are feeling better. I suffer from both migraine headaches and severe liver pain which come about every other day. I used to take exedrin but had to stop because of my liver; now what I'm left with is imetrex shots (I think that's how you spelled but only for extremelly severe migraine because I can't use it too often either; as far as the liver pain I been having to ride them out by laying down on my side. I truly hope that you will receive this New Year in peace and pain free. As I always do; I will be thinking and praying for you !

God Bless You !

Tony

December 31, 2002

Debby-

I feel for you. Been there myself, needing the help

with 'unexplained pain'. My husband teases me - swears I just want

to see if there is any new fun toys in the ER. But are you just sick

and tired of having to educate these so called medical

professionals! When I had to be taken by ambulance, my daughter told

them I had AIH. The EMT had never heard of it so called over the

paramedic who was the 'expert' at hepatitis. His response, and I

quote was " Where did you come up with that one? " Like I just made it

up or something. What an errogant you know what! Then when I got to

the hospital he tells it to the doc in this tone like he thinks I am

a nut case. Then at the time I was a little heavier from the pred,

so the doc says I need a lumbar pucture but he will have to bring in

someone from radiology because he has never done one on such

a 'large' woman. I explained it was the steroids, and the nurse

comes out with " that doesn't mean you can't push away from the

table " . I had a few choice names for her, but my husband made me

shut my mouth. I told them they better bring in some one

else " because the two of you aren't touching me again! " Can you

beleive how insensitive some people can be. Now I could have

understood if I was 300 lbs or something, but I was only wearing a

size 16 at the time. So now I laugh about it, because I figure his

arrogance and her nastiness will come back to them some how. I hope

if they are ever ill, they don't ever have to be treated the way they

treat others. But maybe if they are, they will become better at

there jobs. I am sorry you had to deal with ignorance. But you

should get ahold of the hospital and get that changed on your

records. They stereo type us enough as it is, with out having the

professionals do it to us too.

I hope you are feeling much better. Have a happy new year!

Carole K

December 31, 2002

Debby,

I can relate. I am a nurse and have seen that happen all too often.

I have AIH and when I tell someone in the medical field that I have

it. They say " did you get it from work? " Oh I get so ANGRY! They

automatically hear " hepatitis " and think that I have a virus. Did

they not learn in basic terminology that hepatitis just means an

inflammation of the liver? So now I try to be a little more

selective who I tell that to because I don't want someone thinking I

could be putting my patients at risk for contracting it.

Sorry you had such a horrible time in the hospital, it is people

like that who don't need to be in a " caregiving " profession.

Oh and hopefully they gave you Demerol and Visteral, these two meds

are usually given together as a shot and not morphine and visteral

and that is why you didn't react to the morphine. It seems like

they were nasty enough that they might have led you to believe they

gave you morphine.

Take care!

Amy

> I give up! I waited for 3 hours to get into ER tonight, then

another hour to be seen...hubby took me to ER because I had one

horrible migrain and then the liver side pain too. just wanted a

SHOT to kill the pain....

>

> Well....I got the shot....but it was Visteral and Morphine. Now

mind you...I told them I was allergic to Morphine, but got it

anyway. So far, there seems to be no problem, so I am guessing that

the medication I had a reaction to 25 years ago was a different kind

of Morphine. Oh well....at least the pain is GONE for the time

being.

>

> However, the discharge papers said I had HepC....hubby told them

it was NOT hepC but Autoimmune....oh when will these medical

facilities learn????? I don't have the enregy to fight it. Let

them think what they want. The worst part, is unless I fight the

hospital with the discharge information, it could go on my medical

record as having C instead of AIH.......I GIVE UP!

>

> debby

December 31, 2002

Carole....I just HATE it when they look at you and just curl their nose and

sneer! Like RIGHT....I am making up this disease to just make it up so I

can WASTE my time in the HOSPITAL and not get ANYTHING DONE! RIGHT!!!!!

Grrrrrrrr........

Debby

[ ] Re: Back from the hospital

> Debby-

>

> I feel for you. Been there myself, needing the help

> with 'unexplained pain'. My husband teases me - swears I just want

> to see if there is any new fun toys in the ER. But are you just sick

> and tired of having to educate these so called medical

> professionals! When I had to be taken by ambulance, my daughter told

> them I had AIH. The EMT had never heard of it so called over the

> paramedic who was the 'expert' at hepatitis. His response, and I

> quote was " Where did you come up with that one? " Like I just made it

> up or something. What an errogant you know what! Then when I got to

> the hospital he tells it to the doc in this tone like he thinks I am

> a nut case. Then at the time I was a little heavier from the pred,

> so the doc says I need a lumbar pucture but he will have to bring in

> someone from radiology because he has never done one on such

> a 'large' woman. I explained it was the steroids, and the nurse

> comes out with " that doesn't mean you can't push away from the

> table " . I had a few choice names for her, but my husband made me

> shut my mouth. I told them they better bring in some one

> else " because the two of you aren't touching me again! " Can you

> beleive how insensitive some people can be. Now I could have

> understood if I was 300 lbs or something, but I was only wearing a

> size 16 at the time. So now I laugh about it, because I figure his

> arrogance and her nastiness will come back to them some how. I hope

> if they are ever ill, they don't ever have to be treated the way they

> treat others. But maybe if they are, they will become better at

> there jobs. I am sorry you had to deal with ignorance. But you

> should get ahold of the hospital and get that changed on your

> records. They stereo type us enough as it is, with out having the

> professionals do it to us too.

>

> I hope you are feeling much better. Have a happy new year!

> Carole K

>

December 31, 2002

AMEN! Just wish it was the administrators who would find out, but they

won't because everyone KNOWS THEM BY NAME! Grrrr......but one day, someone

will be hurt badly. Actually, today, my doctor told me that there was a

woman in our town who had a brain problemand needed surgery but there were

no neurosurgeons who would operate in town. IT was too foggy for a

helecopoter to fly her out....she died! Now if it were a family member of

someone in charge, you BET things would change!

debby

[ ] Re: Back from the hospital

>

> > Debby-

> >

> > I feel for you. Been there myself, needing the help

> > with 'unexplained pain'. My husband teases me - swears I just want

> > to see if there is any new fun toys in the ER. But are you just sick

> > and tired of having to educate these so called medical

> > professionals! When I had to be taken by ambulance, my daughter told

> > them I had AIH. The EMT had never heard of it so called over the

> > paramedic who was the 'expert' at hepatitis. His response, and I

> > quote was " Where did you come up with that one? " Like I just made it

> > up or something. What an errogant you know what! Then when I got to

> > the hospital he tells it to the doc in this tone like he thinks I am

> > a nut case. Then at the time I was a little heavier from the pred,

> > so the doc says I need a lumbar pucture but he will have to bring in

> > someone from radiology because he has never done one on such

> > a 'large' woman. I explained it was the steroids, and the nurse

> > comes out with " that doesn't mean you can't push away from the

> > table " . I had a few choice names for her, but my husband made me

> > shut my mouth. I told them they better bring in some one

> > else " because the two of you aren't touching me again! " Can you

> > beleive how insensitive some people can be. Now I could have

> > understood if I was 300 lbs or something, but I was only wearing a

> > size 16 at the time. So now I laugh about it, because I figure his

> > arrogance and her nastiness will come back to them some how. I hope

> > if they are ever ill, they don't ever have to be treated the way they

> > treat others. But maybe if they are, they will become better at

> > there jobs. I am sorry you had to deal with ignorance. But you

> > should get ahold of the hospital and get that changed on your

> > records. They stereo type us enough as it is, with out having the

> > professionals do it to us too.

> >

> > I hope you are feeling much better. Have a happy new year!

> > Carole K

> >

December 31, 2002

Someday those hospital people will get something too and then they will

know firsthand what it is like to be on the receiving end of such

ignorance.

Re: [ ] Re: Back from the hospital

Carole....I just HATE it when they look at you and just curl their nose

and

sneer! Like RIGHT....I am making up this disease to just make it up so

I