[reallynewatthis]

Hi - I'm the wife of a newly injured T-8. He is still in intensive care and not out of the woods yet. However, there was enough hope this morning to make me start learning about what I call the long game, once he is recovered.

I've read some of the posts on flaccid bowel. As a T-8 can he expect that condition?

We are in the US, uninsured and faced with a failing business before his accident (a freak fall from a staircase), so he will be totally dependent on Medicaid. I don't want to depend totally on his rehab to cover everything and be prepared to educate him to advocate for himself as needed.

Terri

[Kwag_Myers]

I'm really sorry to hear about your husband. A lot depends on his injury being complete or incomplete. I'm guessing it's probably incomplete, but you want to find that out. Also, ask about his ASIA rating (A-E). You may want to put this in your profile so we can reference it.

As for the flaccid bowel, it is my understanding that any injury above the T12 generally results in a "reflex" bowel and bladder. Simon (our beloved host) has some information on both flaccid and reflex bowel conditions here. You may also want to educate yourself on Dermatomes and Myotomes. Most people don't know the difference (I know I didn't) and having some understanding will help as your husband recovers.

Rehab will teach him the basics, but there's no substitute for experience, and that's why we're here. The hardest part of rehab for most of us is the alone time, especially at night. Many of us found comfort listening to music, so if he doesn't have an iPod or MP3 player, get him one. I'm two years post and I still use mine on those sleepless nights.

[reallynewatthis]

Kwag - thank you so much for your kind thoughts.

I have to confess, I don't know the difference between complete and incomplete.

I will put the 'score' question on my doctor question list. My guess is they don't know yet how much or how little function he is going to have. We are still in crisis mode, but I'm geared toward future thinking and planning.

The Noob

[Karl187]

Sorry to hear about your husband. A reflex bowel is what to hope for with an injury at or around T-8. It will also matter whether it is incomplete or complete, the difference being that incomplete means the spinal cord is probably not severed and there would be hope for recover, whereas complete means, in medical terms, there is little or no hope of recovery below the injury. That will all hopefully be explained more fully to you and your husband in rehab or by a spinal specialist.

Its likely the bowels won't be focused on until your husband enters rehab and then things will be explained and examined until they know what the effects of the injury will be on his function there.

I found noise cancelling headphones (Sony are affordable) helped on busy wards and sleepless nights, I guess music and MP3's are good too, maybe even a portable DVD player, it sure passes the time.

Anyway, good luck to you and your husband. Stay strong.

[reallynewatthis]

Karl - thank you so much. However, before I come over to the dark side, I need to know what kind of cookies . . .

I think his injury will be 'complete.' I've seen the scans. The cord is not totally physically disconnected, but several large pieces of wedge-shaped bone were driven completely into his cord. The neuro holds no hope of recovery below the total burst fractures in T-8 and T-9, barring the ever elusive miracle.

[Karl187]

Triple chocolate chip...;).

I wish you and your husband the best of luck.

[Vern]

Hi, I moved to NC after my SCI because I had no insurance. In about 50 countys in NC offer whats called the CAP Program. This Medicare funded program pays for all my supplies and for an in-home aid for about 8 hrs a day. My wife is a school teacher and my in-home aid. She's able to split her hrs up, 3.5 in the morning and 4 in the evening. They dont pay much but an extra 15k a year sure helps when you're on a budget.
I've been on Medicare/Medicade for 22 years if you have questions I'll be glad to try and help

Good luck
Vern

[reallynewatthis]

Karl - alrighty then, count me in on the dark side!

Vern - thank you very much. We're still in the very early stages of filing the claims and I'll see how it works out. I'm sure I will have MANY questions as time goes by.

Meanwhile, I'll be hanging out on the dark side

[jcaplan]

reallynewatthis, on Dec 3 2009, 05:19 PM, said:

Karl - alrighty then, count me in on the dark side!

Vern - thank you very much. We're still in the very early stages of filing the claims and I'll see how it works out. I'm sure I will have MANY questions as time goes by.

Meanwhile, I'll be hanging out on the dark side

I am a healthy T-6 complete for 25 yrs, glad to walk you through questions by phone 615-377-2973 or email uniqueproducts@comcast.net Jay

[slyd]

As all have said prior .. . .. you will only really know once he starts his rehab.
One thing is for sure . . . he will have doubts, depression, sometimes anger and over-exagerated frustration which needs to be recognised for what it is!
There will be 1 positive ICON in his life , it's probably you . . . are you ready to for this Life challenge ? .......

My thoughts are with both of you . .

Dave

This post has been edited by slyd: 25 December 2009 - 03:48 PM

[reallynewatthis]

::stops at the door::

::grabs a cookie::

Ummmmmmm . . . . cooookkkiessss . . .

Haven't been around much because things started to happen very quickly. Hubby gets out of rehab on Feb 2nd and the bathroom is in the middle of TOTAL rehab while I run our business and commute to the hospital (150 mile trip) 2-3 times a week.

Piece o'cake . . . . .

I need to change my side panel, after his surgery, he has been classed a T-6 complete.

As for bowel/bladder, the verdict seems to be:

1. reflexive bowel - he is still trying to get on a bowel program, but so far, so good . . .

2. bladder - cannot void at all on his own, not even a dribble or an accident when he is full to overflowing. He is cathing (or being cathed) every 3-4 hours and as a result hasn't had a decent night's sleep in 3 weeks.

What do y'all do at night to get some sleep. I've ordered a selection of caths, leg bags, and night bags from a good discount supplier and we'll be trying a few things before deciding on our choice. Any suggestions??

Thanks to everyone for their kindness and concern.

[kiwibubbles]

reallynewatthis, on Jan 23 2010, 01:18 AM, said:

::stops at the door::

::grabs a cookie::

Ummmmmmm . . . . cooookkkiessss . . .

Haven't been around much because things started to happen very quickly. Hubby gets out of rehab on Feb 2nd and the bathroom is in the middle of TOTAL rehab while I run our business and commute to the hospital (150 mile trip) 2-3 times a week.

Piece o'cake . . . . .

I need to change my side panel, after his surgery, he has been classed a T-6 complete.

As for bowel/bladder, the verdict seems to be:

1. reflexive bowel - he is still trying to get on a bowel program, but so far, so good . . .

2. bladder - cannot void at all on his own, not even a dribble or an accident when he is full to overflowing. He is cathing (or being cathed) every 3-4 hours and as a result hasn't had a decent night's sleep in 3 weeks.

What do y'all do at night to get some sleep. I've ordered a selection of caths, leg bags, and night bags from a good discount supplier and we'll be trying a few things before deciding on our choice. Any suggestions??

Thanks to everyone for their kindness and concern.

I am now one year post injury - what a year. 3-4 hourly cathaters best way to go. I do one at night and monitor what I drink. I cut back after 6 pm and drink a lot of fluid in the mornings. the infections are getting less now. I seem to be getting used to the bugs. I would aviod indwelling cathaters if possible. I have used them for long haul flights (I travel a lot with my work)

As for bowels managment is the key along with routine. suggest he keeps monitoring what he eats either increasing for reducing fibre. I seem to have gotten over the accidents phase only had one in the lat 4 months and that was due to a different time zone.\

As for sleep I never sleep well but I do okay I manage about 6 hours again this is something you get used to.

This post has been edited by kiwibubbles: 23 January 2010 - 01:17 AM

[Maltese Cat]

hi reallynew, so glad you are back. had been worried about what might have been happening- really really pleased things are going a bit better.

best of luck!

[Karl187]

The 3-4 hourly cathing is standard for rehab. I did it myself, having to wake up at 4am every morning to cath. However, after I got home I noticed I wasn't producing much urine at this time even if I drank a few beers (as I would cath around midnight before I go to sleep). So I stopped cathing during the night and its been fine since. One before I got to sleep, the next first thing after I wake up. I still wake up at 4am though, to turn and take painkillers. Then I wake and turn at 6am before getting up at 9am. You get used to the sleep pattern eventually although I take a small sleeping pill, zolpedem (stilnocht) 5mg, before I go to sleep as it helps me nod off again after waking to turn etc. Keep on trucking and good luck.

[TextualFury]

Hi there, first post ever goes to you. I have to say that the sleep issue was worst for me before I found my water bed. It cuts down on the pressure so if I can't turn it's much better. I've only had a pressure sore once in the last year and that was from improper seating on my scooter. (Fighting for a proper chair, but that's another thread). The issue is when I was married I couldn't share a bed with my partner.

My radical suggestion is to consider seperate beds, so that you each can find the "comfortable" you need. Look at an air bed or a waterbed if he has a lot of pressure. My lower back always burns unless I am on my bed. This does make travel a bit of an issue because air mattresses push on me too much.

Good luck, I hope this helps some.

[MBryan]

TextualFury, on 27 April 2010 - 05:56 PM, said:

Hi there, first post ever goes to you. I have to say that the sleep issue was worst for me before I found my water bed. It cuts down on the pressure so if I can't turn it's much better. I've only had a pressure sore once in the last year and that was from improper seating on my scooter. (Fighting for a proper chair, but that's another thread). The issue is when I was married I couldn't share a bed with my partner.

My radical suggestion is to consider seperate beds, so that you each can find the "comfortable" you need. Look at an air bed or a waterbed if he has a lot of pressure. My lower back always burns unless I am on my bed. This does make travel a bit of an issue because air mattresses push on me too much.

Good luck, I hope this helps some.

Textual Fury,
There are waterbeds that have dual "bladders" so each side of the bed can be filled a different amount. My husband, who is a C5/C6 has the minimal amount of water, and my side has the full amount. It helps alleviate the pressure for him but gives me the back support I need. We've been amazed at the number of therapists who discourage waterbeds. Bobby has been paralyzed for almost 31 years now and has only had 2 pressure sores prior to this year. We like the results, plus the almost full night of sleep it gives us.