10 replies to this topic

[Clueless]

Hallo,

My username spells it out, I have no idea what I'm doing and could really use some advice.

My friend has recently suffered a spinal cord injury which has left her with no movement in both of her legs. She's lost bladder and bowel control and is still in alot of pain. She's still in hospital and she's had periodic breathing problems which has meant she's had to be ventilated a few times. They put a tracheostomy in the last time. She hasn't got full movement in her arms but she has some and she also has some (not sure how much) sensation in her arms but nothing in her legs. I'm finding it all a bit daunting, I don't know what to ask and I don't want to say the wrong thing. I got a very helpful information pack from the Spinal Injuries Association. She's very lucky because she's in a Spinal Injuries Unit and I believe the places at these units are few and far between and they certainly seem excellent.

She still seems to think she'll "get better" and everything will be ok but the doctors really haven't said that, they've said quite clearly that it's very unlikely she'll get much movement back in her legs but I think she's just hoping.

They've offered her to have someone come to visit her who has had a spinal cord injury so that they can reassure her that she can still have a life, job etc. but she refuses.

Sorry, this probably all sounds very stupid on my part, but I was wondering if anyone had any advice of how I might help her without either colluding with her that she's "going to get better" or upsetting her further by saying that she WILL get better but she probably won't be able to walk.

I honestly don't know what to do and I'm beginning to dread visiting her because I feel such an idiot not knowing how to approach any of this.

I'd be so grateful if anyone could chip in with any suggestions.

Thank you.

Edited by Clueless, 10 May 2006 - 07:22 PM.

[kanga2433]

Clueless,

This is a difficult time for you, especially as you don't know anything about the topic. probably you are best just being there for now and leave the prognosis to the experts. They wopn't be able to tell much for a while anyway.You could do worse than read through the matter on this site about SCI as this will give you plenty to think about.

You might see if you can find out at what level she has been injured. This si usually mentioned as cervical (kneck) or thoracic (chest) with a number and that refers to the vertebrae damaged. You can get some idea of what people can manage by looking at http://www.apparelyz.../paralysis.html and checking at the bottom for the level.

[Clueless]

kanga2433, on May 10 2006, 08:46 PM, said:

Clueless,

This is a difficult time for you, especially as you don't know anything about the topic. probably you are best just being there for now and leave the prognosis to the experts. They wopn't be able to tell much for a while anyway.You could do worse than read through the matter on this site about SCI as this will give you plenty to think about.

You might see if you can find out at what level she has been injured. This si usually mentioned as cervical (kneck) or thoracic (chest) with a number and that refers to the vertebrae damaged. You can get some idea of what people can manage by looking at http://www.apparelyz.../paralysis.html and checking at the bottom for the level.

Thank you very much for that link. I will have a read through it to try to have more understanding. I know it's C something because I've heard them say it but I can't remember at what level. You're right I shouldn't get involved in anything about the medical issues, it's just so hard as she's so upset and we all (her friends) want to be helpful but I think most of us end up doing nothing very useful and probably make things worse. Good intentions and all that. Thank you for your helpful reply to me.

[Lucydog]

IMHO your friend will have to find her own inner strength to deal with this in her own way. She may want to cry, shout, moan and hope, whatever it is, its going to be a roller coaster of emotions. probably she wont want to see you sometimes, dont be offended, the one thing Ive learnt with my own experiences is that SCI robs you of every shred of dignity you ever had. Believe me there is no dignity when you or someone else has a finger up your bum!!! Anyway the point is that however long the tunnel she will come out the other side a different person. but this is when she will need your friendship the most. Its things like not being able to just call by a freinds house for coffee anymore as I cant get into most houses. This is the sort of thing that really makes you realise life is never going to be the same. Getting your blue badge is another, as thats only for old people isnt it?

If you want to chat dont hesitate to drop me a line. Take care and stand by your friend, Im sure shes worth it. Cheers
Luce

[Jilly]

Hi Clueless,

Dont worry...all of us here has been where you are at the moment of not knowing anything about spinal injuries and all that goes with it. This is a good place to start. If you have any questions about anything chances are someone here will have been through it so dont be afraid to ask. Some of the past posts are a great way to find out things too. so stick around!! You are welcome here.!

Like Lucy said, dont give up on your friend. She has a lot to go through yet and is going to need you. I imagine she is probably terrified right now, but will come to terms with it in her own way. Everyones injuries and their after effects are different.

Hang in there

[Clueless]

Thanks for all these replies, I was afraid I was going to sound like a total jerk.

I'm a bit confused now. I've just checked this out with another friend, and her injury is at C 7/8 but I looked at the link you gave me and I'm confused. It says her breathing shouldn't be affected but it is. Or maybe I don't understand it? It says about the diaphragm. She CAN breathe on her own but it often gets difficult and so they plug up the tracheostomy to a ventilator to give her some help (she's still doing some of it but this helps her apparently.) Sometimes she seems to be able to cope without any help. I'm so confused. She can move her arms to some extent, which seems to be what that link says. She seems to want to permanently cough but that's difficult for her. She really dislikes the tracheostomy and she seems to be centred on that at the moment. But the thing about her dignity is my real concern. She's very upset about the loss of bladder and bowel control too obviously, as anyone would be. I know it's early days and no-one can really predict what will happen but she just seems so depressed. Today she said that she might as well die because she couldn't see any future and that's awful to hear as her friend. The doctors say it 's common for people to react in this way and that she will come round, I hope so because I'm going out of my mind with worry here. I don't want to give the impression she's a "spoilt" or "bratty" type of person, she's really not, she's just terrified.

[Jilly]

Hi Clueless...

My guy was injured 28 years ago, he suffered C2 incomplete and T5 complete. He says that he was on a venterlater for quite a few months and had trouble with his arms. His breathing is now fine, and he has almost full use of his arms and hands. Fine motor (those tricky little finger movements) movements still give him a bit of strife now and then.

I dont know too much about it but I think that the part of the spinal cord that is damaged relates to particular body functions. Damage higher up the spinal cord affects breathing. A complete injury means that no messages can get through from the brain below the injury, and incomplete means that some of the messages can get through.

I dont know why your friend has trouble breathing with a C7 injury when the info on this site says it shouldnt happen - like I said I dont know an awful lot about it. My guess though is that maybe something further up has been damaged, maybe theres still bruising and swelling. Also changes can keep happening for at least two years, and everybodys injury is different.

I think Ive got it right - hope I havent confused you even more!!

[Apparelyzed]

Quote

I dont know why your friend has trouble breathing with a C7 injury when the info on this site says it shouldnt happen - like I said I dont know an awful lot about it. My guess though is that maybe something further up has been damaged, maybe theres still bruising and swelling.

Hi Clueless,

The reason your friend is on a vent, is probably because her diaphram isn't yet strong enough to cope with expanding and collapsing her lungs on it's own yet.

As an abled bodied person, you use a variety of muscles to breath. These involve the Diaphram as the main breathing muscle, but it is helped by the Abdominal muscles (exhale) and intercostal muscles (inhale muscles located between ribs).

Following a cervical or high thoracic spinal cord injury, the abdominal and intercostal muscles no longer work. If the Diaphram is not very strong, after a neck or high thoracic injury, additional assistance may be needed to expand and collaps the lungs to ensure adaquate oxegen saturation enters the bloodstream. This is done by connecting a ventilator to the person via a tracheostomy.

As the Diaphram muscle gets stronger through use, she will become less dependant on the ventilator, unitll such a point, that it can be removed completely.

The Diaphram is still working, it's just weak, and everyone is different in the time it takes to be weaned off the ventilator.

By the way, which spinal unit is she in?

Regards

Simon.

[Stewart]

i think you should also believe that things will be alright because they will

with this type of injury everything just takes time, i'm a c8 and they gave me the same speech but i am now able to use my arms and one hand works well and the other is coming along just fine

so be a good friend and dont let her lose her faith, and keep her in your payers

[Clueless]

Thanks again, I'd prefer not to say which spinal unit she's on on a public board, but they seem to have good counsellors etc. which is great. She's now only on supported ventilation rather than full ventilation which must be a good sign.

Thanks to the people who pm'ed me, sorry, I've been offline till now.

[Jilly]

Thanks Simon... I know a little bit more now!!