9 replies to this topic

[stecurtis331]

my husband has been an incomplete paraplegic for 1 year (though they have just put a name to it).
he had an operation on his spine in june07 which released the spinal nerves (cauda equina) he got discharged and 10 days later he was rushed back into hospital with a spinal abcess and a deep rooted infection down to the spine i had to sign a release paper saying risk to life.in hospital 13 weeks with a hickman line in.
since been discharged in august he has had no after care,no physio,nothing,till this month when our g.p said you are to advanced,i dont know what to do with you!
it is a headbanging long battle the consultant at the hospital basically didnt want to know,said he couldnt do anything and discharged him from his care, though he couldnt walk,feel his bladder,bowel, ive basically give up ,well both of us have.after 44 admittance to hospital last year through pain etc noone wated to know i had to ask the registrar what was wrong with my husband and i asked him was this permanent nerve damage and he basically said yes it looks that way,nothing else,no help offered,we didnt know which way to turn,who to ask for help

finally this month we met a lovely nurse on the district who came to our house and told us what was wrong with him,(incomplete paraplegic)that things werent going to get better(finally someone who has been honest)though couldnt understand why nobody had done anything to help,why hasnt he been referred to the spinal unit(your guess is as good as mine),he is in denial about what is happening to him and us as a family with 3 young children,we both worked full time,hes turned into a couch potato (thinks he cant do anything) and misses doing what he used to do (football etc) and how can you tell him that he cant ever again.its the hardest thing ive ever had to do but one of has to be realistic dont we?.

His pain is so bad neuropathic pain? on 600 mg morphine daily aswell as other things they dont touch him,could cry for him somedays when i cant help him be pain free,does this go on forever or is there an end or even a new beginning.

some days are worse than others for me im only 32 as is my husband i feel so guilty at times that im thinking i wish things were back to how they were,i feel bitter and angry and fed up with doing everything does it get any easier with time(some days i feel like walking out) then i look at him and realise i cant coz i love him so much regardless and hes still the man i married we just need to adapt.
does it get any easier????
when did i stop being his wife and become a full time carer and how do you seperate the two??
thanks
a very tired,exhausted wife
anne-marie

[stecurtis331]

mdeyzel, on May 1 2008, 11:25 PM, said:

Hi Anne-marie,

This is a difficult situation that your in at the moment!
Sorry to hear about your situation,you are a terrific woman because your standing by your husbands side in this difficult time.

You are asking very difficult questions.

BUT this is my opinion!

I am an incomplete paraplegic, also Cauda Equina Lesion.
I was in an horrific car accident, I broke my legs, foot, Arm and back.
It happend 17 May 2007, So next month I'm in my chair a whole year.

Your husband needs a good kick in the behind, This isn't the time for self pity!
The only way that your gonna get to a better place, is when he changes his attitude!
He needs to start doing things for himself, There are amazing people on this apparelyzed website that are way worse off than he is, And they are living their lives.

You should also stop feeling sorry for him, rather motivate him.

The pain will maybe become less over time, but his gonna have pain everyday.
Has he tried Neurontin for the neuropathic pain?

He needs to start some sort of exercise at home.

I can't say anything on your question of "How to seperate being carer and wife" because I'm 23 not married.

Bye

hi

This is annemarie's hubby, Stephen, i know what u are saying is true there is alot of poeple out there that have it harder then me.

I think what is making it so hard to come to terms with that i was out with my children and wife, and the next minute i was in alot of pain and taking into hosptail and been told it was my appendix and i need to get them out.

So that happened then i was in and out of hosptal for the next 6 months been told they is nothing wrong with u it all in your head, when u know that it is not in your head and there really is something wrong, and even when the mri scan show some wrong and no one does anything to fix it in the early stage, but leaving you until u lose all of your movement from the waist down just so they would act on the thing there new was wrong with u in the first few months and then to have the op and end up back in from get a infection and been like this since then with know after hlp nothing and to have no reason why this has happened is wont im trying hard to come to understand why i am left like this when i was afit 30yr old male no accident no nothing to leave u this way is the hardest part to try and but your life back to the way it was.

tablets that im taking at the moment dont work so soon as i move wrong are someone touches me the wrong way i end u in alot off pain with nothing helping me to get it back under control. and could be this way any where from 1 day upto 7 days .

so as u can see with what i have wrote if some thing had happened to me

to leave me this way i would and could start to get over the way i am but for nothing to have happened to me to make me this way is been the hardest paqrt to come to terms with.
i do try and do things myself but pain management is the main factor.

thank you for your reply and im trying to deal with it in my own way,no ammount of antidepressents can work until i get my own head round it.

thanks
stephen

[cate]

Hi AnneMarie and Stephen
Sorry to hear about all your problems, you do not say where you are, sounds like the UK. You can and should get more help, So try leaning on your GP practice and the hospital. you sound as if you are having a rough deal. You need a OT to access your needs and to see what can be done to help, and your wife needs help with you because she also has the children. Do find out what help you can get. I am sure if you go through this site your will find what is available for you. KewlKat if very good o n info, Best of luck, lets us know how you are both getting on. Stephen you need to get your head around to try and make things work. AnnMarie you must be careful that you do not burn yourself out. You have a lot on your shoulders
Cate.

[stecurtis331]

mdeyzel, on May 2 2008, 12:24 PM, said:

Hi Stephen,

That is bad,
Sorry if I sounded too harsh,
It must be more difficult when it just happens for no apparent reason.
But it does get better eventually and life just goes on.

What sort of pain are you experiencing? Where?

My wort pain is in my back, especially when it's cold or there is really bad weather.

Cheers
"Hope it gets better soon"

hi mdeyzel
no it wasnt that you sounded too harsh,i think you thought it was due to an accident,and since i replied you now no a bit more.you were being honest.
PAIN where do i start-there everyday,constant,stabbing,shooting (you know when you stub your toe and it hurts like mad for that few seconds)think of that but the pain never lets up.
the pain starts from the bottom of my back to the middle.24-7.hopefully i might be getting started on a tablet similar to gabapentin cant remember the name,for neuropathic pain.you are lucky you have obviously got your pain under control,thats 1 thing they have never done.
Can u stand and walk ok or are you in a chair all the time,do you fall if you try to walk,i did but can no longer walk.its good to get some advice from a fellow sufferer,what meds are you on and do they work,do you self catheterise,
thanks
ste

[stecurtis331]

cate, on May 2 2008, 04:32 PM, said:

Hi AnneMarie and Stephen
Sorry to hear about all your problems, you do not say where you are, sounds like the UK. You can and should get more help, So try leaning on your GP practice and the hospital. you sound as if you are having a rough deal. You need a OT to access your needs and to see what can be done to help, and your wife needs help with you because she also has the children. Do find out what help you can get. I am sure if you go through this site your will find what is available for you. KewlKat if very good o n info, Best of luck, lets us know how you are both getting on. Stephen you need to get your head around to try and make things work. AnnMarie you must be careful that you do not burn yourself out. You have a lot on your shoulders
Cate.

thanks for your reply cate,
yeh we are in the uk,we have got an o.t and they are trying the hardest to find things for me that work and best suit my needs.My gp has done as much as she can do,she thinks i am to advanced for her care,and i need specialist help,the hospital i wouldnt bother,hopefully the nurse whom comes to visit is trying to get me into the spinal clinic to see what they can offer,and might end up being admitted for assessment which means i might be in hospital for a while,but at the moment not to sure.whats your story cate how are you,are you having better luck than me,
Im trying to get my head around things it may take a while though but hopefully once the help is there a little bit faster.
thank you cate for thinking about me(anne-marie)im trying not to but sometimes its hard when you have that much to do and little time to do it in,but im finally trying to take things a little bit easier,i think(or it feels)ive got the whole world on my shoulders haha.

hope to hear from you again
stephen-anne-marie

[Mike (c4-5) & Lorena]

Anne,

I dont know what to say about your hubbies injury. It sounds like some nerves were partially cut. My Mike use to have terrible pains in his thumbs. His thumbs could not barely scrape cloth without him being in severe pain. After a year or two the pain slowely went away. He still has pains but not nearly as much as he can deal with it.

Have you written spinal rehab centers like Craig Hospital in Denver, or Washington Univ in St. Louis Misouri? Any major hospital has a spinal rehab center. Make one letter and keep emailing it until you get some help.

For you; You need an attendant for a few hours a day, couple times a week so to scream, cry pray, whatever. If you can get rest, you can not help him. It is like when you are in trouble on an airplane. You place your air mask on first before you do your kids. If you pass out, who will help your hubby.

Sorry that I have no clue. Talk to a rehab clinic and plz find a way to get some rest.

L

[stecurtis331]

Mike (c4-5) & Lorena, on May 2 2008, 08:39 PM, said:

Anne,

I dont know what to say about your hubbies injury. It sounds like some nerves were partially cut. My Mike use to have terrible pains in his thumbs. His thumbs could not barely scrape cloth without him being in severe pain. After a year or two the pain slowely went away. He still has pains but not nearly as much as he can deal with it.

Have you written spinal rehab centers like Craig Hospital in Denver, or Washington Univ in St. Louis Misouri? Any major hospital has a spinal rehab center. Make one letter and keep emailing it until you get some help.

For you; You need an attendant for a few hours a day, couple times a week so to scream, cry pray, whatever. If you can get rest, you can not help him. It is like when you are in trouble on an airplane. You place your air mask on first before you do your kids. If you pass out, who will help your hubby.

Sorry that I have no clue. Talk to a rehab clinic and plz find a way to get some rest.

L

thanks lorena
the nurse who comes to see ste has reffered him to our local spinal unit in england we havent heard anything yet but im keeping my fingers crossed.thank you for your kind words they mean alot,there is alot of caring people on this forum,and kind words help and someone to talk to who is or has gone through the same sort of things
hope everything is ok for you two
thank you again
anne-marie

[cate]

Hi AnnMarie and Stephen. My story is my daughters, it is on here somewhere. short version, she had a car accident and it was not discovered for about 10 years that she had damaged c5-c6 cord completely flatten and no chance of regeneration. rods in her neck and bone from the hip. it has left her with permanent nerve damag, also BSS and Lymphodema, but she is ''lucky'' as she can still walk on crutches, is able to live on her own and work part time, also studying. On top of that she had an early injurie to the knee, where her ACL was busted and has been operated on 3 times and all ligaments replaced, she also has foot drop, and the whole of her right side of the body moves much slower, and hands go into spasms. At first they though she had MS, but after mr scan, they whisked her into Stanmore to be operated on right away. That is the RHS hospital. Very good for spinal injuries
But for her there will be no further improvement, we hope that it will not get any worse, but of course no guarantees in this life..
I do hope you get the help you need, and of course it will not be in your GP remit to be able to help, but they do know where to send you for more help, and they must keep trying.
It is worth bearing in mind, that with your OT help, you should be able to get adjustments help/aides in your home. but that is a very slow job, but do look into it. Anything that can make life for both of you any easier .We do have some good hospitals over hear for spinal probs, so do see that you get referred to a specialist that can help you.
Cate.

[stecurtis331]

mdeyzel, on May 3 2008, 08:59 PM, said:

Hey Stephen,

Michael here!

I can't walk yet.
I am not giving up though, I exercise daily!
My left leg is the weak one, My right leg is sort of okay, What I do is strap a leg brace to my weak leg and the my father helps me to stand, I cant stand alone because there is no balance,

I'm in my wheelchair most of the day,

They say that a lot can happen in 3 years, This month I'll be in my chair for a year!
Maybe I'm being over optimistic and my expectations are a bit high, I believe I'll walk again, even if I walk with a walking aid or a limp, anything will do!

Maybe I'm just not accepting the situation that I'm in at the moment,
I won't say that I have my pain under control, I'm just not letting the pain get the best of me.
I got bad pain in my legs and my back,

I use Neurontin for neurological pain
Voltarin injections for pain
Mybulen pain tablets

I had a catheter and I wore a nappy for at least 7 months, That was bad, Then when I went to the hospital I asked them to take it out I wanted to see if I can control my bladder and Bowell, It didn't go so well the first 2 days, But I started using a bottle to pee and I slowly but surelly could feel when I needed to use the toilet.
So I'm so happy that I can at least go to the toilet alone.

Can you do your own transfers? "Wheelchair to bed" "Wheelchair to car"

What did your doctors say about the pain that you've got?

hi micheal,
no i cant transfer at all on my own,need help my left leg is also the worst cant feel it,then at times i can feel it but not the same as the right one.
we can only hope that we are going to walk again,the only thing ive been told by the neurologist that this is the way im gonna be,not going to get any better and only may get worse in time.
but they are not to sure how bad,but i hope you carry on with your exercises you have got the right frame of mind.
i had a home visit from the physio the other day and coz i was in alot of pain there was nothing she could do for me regarding exercises.
i always want to be out in the car as that is the only time that i dont need help and when i feel more normal and can forget about everything that is wrong,
the ot wants me to start to slide board transfer,because i was falling on a daily basis and now have to change my wheelchair before i can start to do that and then hopefully i will be more independant
my msn addy is on my homepage if you ever wanna chat on there,
like i say we can only hope and carry on hoping
take care,keep in touch,glad to hear from you as we are both going through the same thing and maybe help each otherget through it together as by the sound of it we are at the same point


stephen

[stecurtis331]

we have 3 children,12,10,8

our oldest girl tries to understand whats going on and i talk to her and try and make her understand
our son whos 10 is bottling it all up and its taking its toll on his behaviour.
He's finally opened up tonite that he's angry,upset and everyother emotion that a child can feel(absolutely heart breaking to see).He sat and sobbed and saying what he misses doing with me,ive told him im still the same dad,we just have to do different things together.
our youngest girl has a completely different attitude like this is the way its gonna be and thats that,she has always been very forward (haha),we cant knock her for it either.

has anyone got any advice on how to deal with this we would be most grateful.

stephen&anne-marie