How is everyone feeling?

September 18, 2001

I went back to my physiatrist yesterday after my botched epidural. He had the nerve to ask if i was interested in trying another for some relief -- NOT!!! especially not since my legs have gotten weak since that and i get leg cramps in my calfs that wake me up during the night and particularly when i am waking up in the morning so much so that my toes are pointed and i have to stand up on that foot to get my foot to go flat.

he gave me a prescription for Zanaflex for spasticity. but, this Rx is not in my formulary, so it costs me $30. i asked the pharmacist if there was anything similar and she only said soma and flexeril, but they are just muscle relaxers not for neurogenic spasicity. i have bottles of both and they have never worked. i have heard y'all mentioned Baclofen for spasticity. Does anyone know how this med relates to Zanaflex? I dont know how long Zanaflex is supposed to last, but i slept 12 hrs and woke up with teh leg cramp, but at least i didnt wake up with any through the night. Do you guys have any insight on this? This is new to me since the botched epidural. He also increased my oxycontin from 20mg to 40mg twice a day.. granted i can only take that when i am not working.

So, now his only option to me was a spinal cord stimulator. But, i have to see my neurosurgeon.. i have talked to my neurosurgeon and he has already told me that he would do exploratory surgery before he would do the cord stimulator. So, when i sign off, i have to call and make my appt.

Jenn

SBO @ L2 w/diastematomyelia, TCS & lipoma w/surgery 4/5/01

now investigating possible retether

September 18, 2001

Hi Kathy,

I have been feeling really rough. I have been an emotional wreck from

the events of last week. I also have had allergies flare up and

spasticity high. This has put strain on tethered areas a great deal.

My hip has also been out of socket repeatedly as well. I have just

gotten a partially torn achilles tendon healed. Not really my week

the last few weeks. Just overwhelmed all over. I am supposed to get

my Baclofen test injections early next month. Not a moment too soon!

I hope you are well and good. Take care. May everything get back to

routine for us all. Not good for TCS problems. I probably need some

BoTox myself.

Kent Teffeteller, PH.W! (Professor of life, tumbles, and wheelies)

" Trying to get the feeling again "

" If found walking, please remind me that I am paralyzed "

September 18, 2001

Hi Kathy -

Gosh, I can't contribute much on any item you've mentioned,

injections or the fentynol patch....that patch (25mg) is what sent me

to the emergency room with a " screaming headache " . Did help the back

pain though, or maybe my head just hurt so darn bad, I didn't even

notice the back (hehe). That's when they put me on a low dose of

oxycontin which has been great along with the pain clinic.

I will be finishing up with the Pain clinic next week and I am so

pleased with all the help they have been from the Aqua Therapy to the

Tens Unit. All is helping a bunch, although with all that is going

on in the world...it all seems sometimes so trivial to worry about my

back pain.

Included in the pain program was hypnosis for anyone interested in

quitting smoking....picked a heck of a time to try this, but I'm

giving it a " go " . Haven't had a cigarette in 22 hrs. So far so

good.

I had done hypnosis before for smoking and actually, it did work.

The problem was the weight gain!! So I ended up lighting up again...

(stupid on my part). But, I'm hoping with the Aqua Therapy will help

keep the pounds off, and if not, oh well. I'll deal with it.

Well, hopefully, you'll adjust to the patch and be able to get some

sleep!! I think the convenience of the patch is great though...stick

it on and forget it for a couple of days.

My absolute main thoughts are praying that all the leaders of this

country make all the right decisions in the days ahead.....and that

whatever those decisions are, they will be an end to all of these

horrific crimes against innocent people. Sure is scarey!

Lynn

> Hello:

>

> With all of us glued to our televisions and radios (and rightfully

so), we

> haven't had any time to catch up on what's going with each other.

>

> I was wondering who has had recent tests? How is everyone feeling?

> Anything new with anyone? I believe there was one or two from the

list

> having surgery soon or already had it before the 11th...how are

they doing?

>

> I was switched from my regular drug routine to Fentanyl patches.

The only

> problem I'm having with it is sleeping. For some reason the first

and

> second night with a new patch, I sleep fitfully. Sweating, waking

on and

> off: just plain terrible sleep. My doc says that " should " go away

with

> time, but I'm about to give up on it...I can't function on the

little bit of

> sleep I'm getting. That only leaves one night of sleep (you wear

the patch

> for 72 hours) and by the third day the patch has stopped helping

the pain

> anyway. I have botox injections scheduled for this Friday and I

can't wait!

> The relief this gives me is incredible and I'm more than ready

right now.

>

> Plus we have coyotes all around us and they howl like crazy at

night (I

> think hunting for the stray cats we have on our road) and that

wakes us all

> up every night. For anyone that's never heard this sound, or been

awoken by

> it, it's the eeriest sound, next to someone screaming, to be awoken

by.

>

> Kathy

September 21, 2001

> Hello:

>

> With all of us glued to our televisions and radios (and rightfully

so), we

> haven't had any time to catch up on what's going with each other.

>

> I was wondering who has had recent tests? How is everyone feeling?

> Anything new with anyone?

Hi Kathy,

Like everyone else I was glued to the TV for the first4 days or so.

Then I hit overload. A niece was scheduled to be married on Saturday

and went through with it (although the Italian honeymoon was

cancelled!) and although there was talk of the attack it was nice to

get away from the tube for a while.

It's been about 2 months since I got out of the hospital after my

surgery. I saw my surgeon the week before the attack and he thought I

was doing well, and prescribed physical therapy finally. I haven't

managed to call and get it scheduled yet...just couldn't last week,

and this week the place I chose (he sent me to a " chain " , there's

locations all over the city) was overbooked and couldn't take me. Now

I have to decide on my 2nd location choice

I'm moving around much better, and only need the cane on the stairs

and at the mall (G) or other place where I need to walk a lot. When I

wake up my back muscles are so stiff I can barely roll over to get

into position to get out of bed. It is like the 6-8 inches from my

waist on up has been " sprained " from one hip to the next. I take some

Ibuprofen and it seems to work out in a half an hour or so. But I am

really staggering that first half hour.

The pain in my feet and ankles is pretty extreme, I'm taking neurontin

3 times a day now and it isn't even touching it. I don't want to be on

a narcotic pain killer though, I'm spacy enough as it is. I have hopes

of getting back to a " normal life " . How naive, huh??? (G)

All in all, though, I would have to count the surgery as a " success " .

Not knowing what might have happened had I not had it, of course. But

at least nothing really awful happened *because* I had it....

Take care everyone.

Genie

September 21, 2001

Hi Genie

I remember that " stiff " feeling quite well. You're right, it will subside

in time, or at least should. Glad you're to the point of having PT. Was

the chain PT place Health South? If so, glad they were overbooked. I've

yet to hear one good thing about them.

Seems we always manage to get to the mall no matter what our condition huh?

<BG>

I wonder if something like botox would help the pain in your feet (I feel

like the top salesman for botox lately...too bad they don't give our

referral money.) Maybe something you should ask about though?