Re: [AdultLPs] Re: long e-mail with questions regarding spine surgery and what peoples outcomes have been

[Guest guest]

Thank you Ann for your encouraging reply. I have already accepted my

situation and I although sometimes I wish things were different I to feel that

in the situation I am now I am able to do more in a chair. Meaning with the

sports idea before I couldn't play a sport besides boccia now I can think about

doing a more active sport. Like tonight I'm going to a recreational place where

people in wheelchairs can go and play sports or tryout new equipment. I try to

get out as much as I can with family and church friends. I am still involved

with the committee at the hospital for the pediatrics floor like I was before my

surgery. They are still waiting for me to come back and volunteer on the actual

floor and clinic. I need to figure some personal things out before I can do

that. But I'm hoping that won't take too much longer. I have an appointment to

see if I can get one thing taken care of in Jan.

I agree with you about how LPA should have a mini group who has more of a

disability because of surgeries or other problems. It would be nice to go and

compare notes. I have been trying to get in contact with people who has had

spinal cord injuries do to surgeries but everyone I have been able to talk to

are all average size. Which isn't all bad at all. It would just be nice to

find an lp who has had to deal with the same problems.

Someone asked if I have a lawyer. My answer is NO and I don't plan on getting

one. My doctors had NO control over what happened. They were just as

devastated as I was that this happened. Their reasoning for this happening is

that you can't see how badly the spine is damaged through just scans and x-rays.

You can't always count on everything showing up. Besides I was starting to lose

function and feeling before the surgery so there was no reversing that anyway.

Again Thanks for listening.

In a message dated 12/06/08 14:00:54 Eastern Standard Time, singer39us@...

writes:

First of all, my heart goes out to you . I know that we've met in

person before, so you already know quite a bit about my situation too.

I've had 3 laminectomies over a period of several years. I too need

help and have an aid that comes in for 25 hours during the week. But

I am able to get up slowly with the help of my walker and are not 100%

paralyzed (just partially from the chest down, but mostly because of

post-laminectomy pain and numbness) so I can go to the bathroom by

myself, etc. Getting out of the bathtub though has become a big

challenge.

Another major issue is that over the past several months I have been

dealing with worsening conspitation issues, and although I can eat all

the fiber in the world and take what the doc prescribes and still

nothing. I do go, but not enough to feel like I'm totally emptied

out. I know a lovely subject, but a fact of life for some of us LPs

having to deal with similar situations.

The wheelchair sport idea sounds encouraging. As long as you have

sufficient upper-body strength, then I would say go for it. It seems

that there are several LPs out there in your situation or something

similar. I still live on my own, so it helps to become independent

again if one can. I know my limitations within the house and like to

keep everything in an extremely (pain-in-the-butt hehe) orderly

fashion. I think this is common for people who get around with

walkers, canes scooters or wheelchairs. When I am out I use my

wheelchair or scooter.

One tip I would give you is don't stop living. I think once you stop

going out, etc, then you tend to want to give up and can easily turn

into a depressed-hermit. I have found that my local public transit

wheelchair bus comes in handy. My aide now travels with me and for

her the ride is free, so that is bonus for both of us. This past week

I was able to get some of my remaining Christmas shopping done and

also got my haircut. Those things might seem mundane to the

physically-abled person, but to a disabled person it is healthy to

remain social by getting out and also fresh air helps your overall

being.

I know I have rambled and no I am not the #1 expert on these things,

but you've got to keep trying out what works for you. It would be

good for LPA just to have a group for those of us like ourselves, so

that we don't have to feel so isolated. Not that I feel like that

" all " the time, but I think you know what I mean.

Do hang in there and remember don't quit! I know you can do

whatever you set your mind to. If anything, being disabled has made

me a lot stronger, more-determined individual and it will for you too!

Hugs!

Ann

>

> Hi my name is , I'm 24 years old. I have had quite a summer.

It all started out with losing partial feeling in my feet and my left

leg was giving out this all had do to with the. stenosis getting worse

over the years so my doctors decided I needed surgery right away. I

just had my back surgery this past June. My doctors went in and did

three laminectomies in different areas and then fused them. Well half

way through my surgery they noticed something was wrong. They did a

wake up test and asked me to move around and I couldn't move my feet

or legs. They finished the very long surgery and started doing neuro

exams and hoping things would get better. After the first week my

incision wasn't healing the way they wanted it so they took me back

into surgery and found I had an infection starting in the lumbar part

of my spine so they cleaned everything out and looked everything over

to make sure everything else was stable. I ended up staying an extra

week after that surgery. My paralysis started at T6 and it's moved

down to T10 or around there. I ended up staying in the hospital for

over 2 weeks in Boston (where I had my surgery) then I moved back up

to Maine (where I live) to a rehab part of the hospital here for

another 3 or 4 weeks. Now I'm home and trying to workout all the

little details of being a paraplegic. I don't have any feeling from

the stomach down. Which means I have to deal with all the personal

things down there differently. Having to cath and do all that good

stuff. I'm in a wheelchair all the time now and needing a lot more

help from other people. It has been quite an adjustment for me and my

family. Going through a change like this doesn't just effect you but

everyone around you as well.

>

> My questions. How many of you have ended up in this same situation

or similar situation? Do you live independently? Do you have a PCA

come in or live with you to help with morning and evening routine?

Advice for living on your own? Schooling? Since I am only 24 and

still trying to figure out what I can do now. Right now I'm living at

home still and my Mom is my PCA. I'm very blessed to have a very

supportive family and church who has helped a great deal not only in

the materialistic things but emotionally to. Yes it's hard getting

used to a new way of living but it's doable and I'm getting used to

things ok. If anyone is in this situation have you thought of a

wheelchair sport? How are you doing it? and what sport are you

playing?

>

> Thanks everyone for listening!! I kind of rambled and things are

probably not in order but I hope you all get what I am talking about.

Thanks again.

>

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[Guest guest]

On Sat, Dec 06, 2008 at 02:42:51PM -0500, bailey5774 wrote:

> I agree with you about how LPA should have a mini group who has

> more of a disability because of surgeries or other problems. It would be nice

> to go and compare notes.

Tekki Lomnicki runs a workshop at the conferences called " Difference Within

Difference " that might be relevant. I haven't had a chance to go in the past,

but she described it to me once as a place to discuss " minority issues " -

including further disabilities - that make people different even within LPA.

Ian