Re: Hip Pain? re: Kathy

January 21, 2008

Amen to the great advice given by Kathy! Kathy, I forget the original

reason for your surgery?

In a message dated 1/21/2008 9:27:17 A.M. Eastern Standard Time,

kmoulton@... writes:

I'm not sure if my own information will help, but in case ...

For me, before I had my initial untethering I had little to no pain. I did

have some intermittent calf pain in my L leg, but that only started months

before this untethering was very tolerable. I didn't know I had Lipomeningocele

until about ten/eleven years ago - I was 35/36 when I was diagnosed.

Anyway, when I woke from the first untethering, I was, as almost everyone

is, in terrible pain. My back, hips, legs, everything. The pain was reduced

once I healed from the surgery, but it also never left. The pain got worse

within months and I also began experiencing spasticity. My nsg did absolutely

nothing wrong (always feel as if I have to say that - sometimes there are

complications from a nsg that didn't do a great job).

I had/have pain in my hips (more-so in the left), horrible leg and back

pain, shooting electrical/cramps down my left leg, etc, etc. Again for me,

there

is nothing wrong with these areas (except for my back of course), that would

cause these pains. My spinal cord just sends pain signals to areas where

nothing is wrong.

I had a medtronic pain pump implanted in April of last year and it has

Gabapentin (Neurontin) in it. The medicine delivered in this fashion took away

70-80% of my pain. As my activity increased so did my pain, but with each level

of activity/pain increase, the clinic I go to turns up the Gabapentin and it

helped the new pain. I could not wait to return to work though and I have no

regrets (yet at least). The only residual pain I have is if I bend often (I

teach K-5, sp. ed.) then my back will hurt and I get these God-awful

electrical jolts in my L leg. The elec. jolt cycle is very difficult to break.

At any rate, I had a total of five untetherings over an eight year period,

plus an additional two lengthy surgeries to fix spinal fluid leaks (after my

first untethering and I think the fourth surgery).

I think we're programmed to want something that is wrong with us fixed. I'm

not sure if enough people stop to think if their quality of life were made

worse from a surgery, if they would feel the trade-off would be worth the

" try " . I wish I had - but again, I really believe we're just programmed to want

something wrong corrected.

An untethering helps many, many people and they go back to their life

without the problems they had before their surgery. However, it also can cause

more

damage than was present to begin with - and as far as I know, beyond taking

into account if you had symptoms as a kid, and no intervention was done,

there really isn't a litmus test to tell if you will be worse, better, or the

same.

If I had it to do over again, I would split a piece of paper into columns. I

would list every issue that I find intrusive in my life that is caused by

the tether. I would list on the next column what I hoped would be

corrected/halted. I would rate how intrusive/how much pain each symptoms

causes. I would

then list how it would be changed if it were made worse/better from the

surgery.

List the life activities that we all want - to be able to be independent, to

meet our own household needs - income, taking care of ourselves, our home,

our children, all of those " musts " that we think we can't or don't want to

live without being able to do. List next, those things that you aren't able to

do - or might not be able to do if the surgery makes something's worse - going

to the movies, shopping, going out with friends, etc. Again, list how much

getting better/worse you would find these activities. Look at this list and

whatever else you add to it, for a while.

In your case, where you are having many problems now - I would also suggest

keeping a daily diary if you aren't. When you find yourself frustrated or

missing an activity that you were able to do or want to do - mark it. When you

see your nsg, bring these with you and ask him/her what he/she thinks the

chances are that you'll be able to do/not do after this surgery. This is about

quality of life.

Sorry for the length.

Kathy

Hip Pain?

>

> Hello! My name is Cristina and I'm 19 years old. I've been

diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk

disease, osteopenia, adrenal gland insufficency/disease, osteopenia,

orthostatic hypotension. I have been decompressed (3 times)

detethered and have had numerous shunt surgeries. My last surgery was

in September '07 and since then I have been on steriods, first to

reduce swelling and treat chemical meningitis and now for adrenal

gland insufficency/gland insufficency/low cortisol levels. I have

joint pain, particulary in my knees and hips. I've been tested for

arthritis and related disorders in the past but not for over a year.

Some doctors have thought I might have fibromyalgia but I don't quite

fit the symptoms correctly. Mostly the joint pain has been put down

to the chiari and other problems.

> Lately (the last two months or so) my left hip has been causing

many problems and is in a lot of pain. I first noticed it would pop

out of place some when I was walking and that if I walked much (five

minutes maybe, walking in a store is too much) it would be hurting

very badly. It has gotten worse and worse and is now to the point

that it hurts pretty much constantly at a dull ache and any time I

walk it gets worse. About two weeks ago my Mom and I went to Joann

Fabrics for less than an hour, twenty minutes of which I spent

sitting in a chair at the front of the store. Afterwards my left hip

was hurting so badly I was almost in tears. When we got home I could

hardly put weight on my leg. This lasted for over a week and even

when I was not walking the pain was worse. This is not the first time

that I have had a hard time putting weight on my leg after walking. I

have decreased range of motion, whether due to pain or because it

physically won't go I am not sure as

> it hurts too badly to force it. I recently went to my PCP about

it because it is takng away the little mobility I have left and

preventing me from increasing my indurance. She was concerned because

I was on steriods and said they can cause problems with your hips (I

can't remember exactly what she called it). She had me get X-rays

taken of my hip but I do not have the results yet.

> Has anyone else had any problems like this? What was the reason?

Was there anything that made the pain better? I've tried heat and ice

but neither seem to help. I've also taken motrin and my stronger pain

meds when the pain is really bad which helps some but not with the

intense pain when walking. The only thing I've found that helps is

staying off of it but that has its own set of problems and causes

pain in other places. I am getting very frustrated as my physical

therapist thought exercise would help it but so far I have not

noticed any difference and I am becoming more and more limited in how

much/how long I can do things. I was going to return to college in

February but as of right now am unable to largely due to the fact

that I can't walk enough because of the hip pain (even though I am

getting a Scooter). I am afraid I am going to be told that this pain

is just from the EDS or chiari and that there will be no treatment.

I've thought about going to the

> rheumatologist I was seeing for a while but wasn't sure he'd be

much help. Any help/advice/much help. Any help/advice/stories wou

makes me feel like I'm not the only person out there dealing with

this! Sorry for the long post, I guess I got a bit carried away with

my frustration. I hope you all have a great long weekend and that it

is as pain free as possible!

>

> Cristina

>

> ------------ ---- ----

> Looking for last minute shopping deals? Find them fast with

Yahoo! Search.

>

January 21, 2008

No, not sorry at all. You absolutely took a most reasonable risk. Someone

sent out an article recently about follow up on Adults who have had TC

release and the authors concluded it was worth it to proceed though

interestingly,

it sounded to me about 50/50 so I may well have misread. Darn. Sure wish we

all knew before hand which side of the 50 we or our loved ones would fall!!

In a message dated 1/21/2008 11:14:53 A.M. Eastern Standard Time,

kmoulton@... writes:

Hey

My left calf muscle was wasting (about a 2 " difference which was very

noticeable - I have very skinny calves). I always feel badly for repeating this

information - so many have heard it a thousand times - but since you asked :-)

I

didn't know my leg was wasting, I truly thought since I was right-handed

that I just wasn't working that leg enough - ya know, favoring the side I used

the most. I did step aerobics five/six days a week, always trying to be

mindful of working the L side - nothing helped. I thought it would be stupid

and on

the hypochondriac side to bring it to a doctor's attention, so I never did.

(My sister is a real hypochondriac and I end up going the other way to not be

like her - I don't bring things to doctor's attention and very rarely went

to a doctor before this started.)

A few years I guess, after I noticed my left calf was seemingly getting

smaller, my bladder really started to " go " . I was having accidents daily. I

knew

I had prolapsed uterus. After we had our fourth child, I had gone to my

OB/GYN to have a check-up and to ask if everything was " okey-dokey " so to

possibly

have one more child. I was told no - my uterus was so prolapsed that it more

than likely wouldn't hold another pregnancy (I was 28/29). I was devasted,

but never really thought about the prolapse again until I began to have

strange sensations about the same time my bladder began leaking terribly. I

felt

like my insides were trying to fall out.

When I went back to my OB/GYN about six years later, I was told I was in the

last stage of uterine prolapse and my bladder was also very prolapsed. I

needed a bladder tuck and a partial hysterectomy. After this surgery I had a

bladder infection that lasted a bit more than nine months. I always felt like

my

bladder was full and my OB/GYN that had done the surgery was not sympathetic

in the least and after about nine months on the same anti-biotic, I had a

severe allergic reaction to it. That sent me to my gen doctor, who cathed me

after I thought I emptied, was shocked at how much residual urine was left and

sent me to a uro.

Without the uro, I don't know how long it would have taken for a diagnosis.

He was amazingly bright. He tested my reflexes - one side hyper, one side

absent. I had a positive Babinski and a swirl pattern of missing sensation in

my

legs (that I was not aware of). He noted the muscle wasting along with some

other issues that I no longer remember, but sent me to a good neuro. The

neuro ordered an MRI and it showed the Lipo.

About two-three months before my first untethering, I began to have some

small intermittent pain in my left calf. However, that was it for pain. As I've

said - I woke up from the untethering in horrible pain and the pain areas

never left. Then there were the deficits I experienced immediately after this

initial untethering and more that came on within the following eight or so

months. Another untethering a year later to try to fix the pain and some other

problems - it helped somewhat for a few months, but also caused more problems.

Three more untetherings to try to fix new and/or worse areas, and with each

surgery it would help some problems temporarily, but always gave me new

issues. I finally stopped after my fifth untethering.

It's like hamburg back there now - I also produce a lot of scar tissue so

these two issues make closing after surgery very difficult. I had two large

leaks after two surgeries - one contained under the skin and the other to the

outside of me. Both required long surgeries to correct. I woke from one surgery

not able to move or feel my left leg at all. It returned before I left the

hospital, but that was a very eye-opening experience for me.

I know deep-down that I was on a slippery slope going down hill before my

first untethering. It was my time, I had lived thirty-something years before my

dx. and it was just my time to begin experiencing symptoms (I had some as a

kid also). I don't know if things would be any different if I didn't have the

surgery - I was definitely beginning to go downhill and who's to say?

Sorry you asked? <G>