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**SCI-Nurse** · 28 Aug 2003, 6:26 PM

An injury like this is certainly not something you would wish for anyone, but if you must have a tetraplegic injury, C7 is one of the best levels.

I would assure them that at this level after rehab he should be completely independent in his own self-care, able to live by himself (if not immediately, certainly soon), drive, use a manual chair anywhere, work, go to school, etc.

I often find this is the type of information patients and families want early. I also assure them that a family life, marriage, sexual functioning and children can still be part of his life if he wants them.

I would also encourage them to make all efforts to get him into the best rehabilitation center he can as soon as possible, even if it means being further away from his family.

Since his injury is less than 15 days, I would also encourage them to look into the macrophage study in Belgium. More information can be found here: http://www.proneuron.com/ClinicalStudies/index.html

(KLD)

**Wise Young** · 29 Aug 2003, 3:57 PM

Adrian,

Just your description of the doctors' opinion, i.e. they "do not know how much or if he will recover function" gives me confidence. This is a departure from the usual "he is complete" or worse "he is transected" statement.

Recovery takes a long time and both your pupil and his family should batten down their hatches for the stormy times to come.

The first order of business must be to ensure that his spinal cord is not getting further injury. Stabilization and decompression should be considered if he has not had it already.

The second is aggressive and early rehabilitation to minimize atrophy and loss of function. As soon as his fracture site allows, he needs to be mobilized and exercised.

The third is to avoid the main complications of cervical spinal cord injury: pneumonia, urinary tract infection, pulmonary emboli, and decubiti. All of these are avoidable and preventable complications.

The fourth is organizing to live with spinal cord injury. There are many skills to be relearned, from bathroom and cleaning oneself to driving. The goal is independence.

The fifth is education. At age 20, your pupil must not neglect the most important part of his body. Education is the most important indicator of the quality of life of people with spinal cord injury.

Restorative therapies will be available.

Wise.

**SWEETIEheart** · 6 Sep 2003, 9:03 PM

My advice isnt on the medical standpoint nor from a quad standpoint (I'm t6), but I was a month from my 21st b-day when I was injured. It's hard watching your young life change instantly and never thinking something like this could happen to you. I'm a memory "look where I've been" type of person, so I kept a lot of things from my hospital/rehab time. I hate having my pic taken, but while I did somethings I wanted it took. My first time learning to ride a handcycle, my first time using the Ergys machine, me standing in a standing frame, to simple things like me laying in my hospital bed reading cards people sent me. I kept my staples from my spinal surgery once they were removed. My parents even saved the papers I'd written on while in trauma(the little notes to them since I had all the tubes in and couldnt talk). With all this stuff I made a scrap book so I'd never forget where I've been and how far I've came. Pyschologically it reassures me at times. It brings back memories of the long road this has been. Although I made it for me other people look at it and will start to cry. They become thankful for what the have and can do while learning how my life has changed and seeing the equipment and things I can do that they'd never imagined or thought of.

My advice to him and his family members would be to stick back these "lil' things" even if they might think it's junk now. Like a baby pic book, he may want to go back and look at them again one day.

**krstofer** · 8 Sep 2003, 7:32 AM

Take lots of pictures.
It may sound morbid to some, but in the future he (assumption, "he", right?) can look back at them and say "Gee I've come along way".
I just recieved yesterday the x-rays that were taken during my implant surgery. (why I have them now I have no idea) We were looking at them, and my Mom was like "Hey there's all the bone chips". I have no memory of that time, being comatose for 2 weeks immediately after my big day, but it was cool to have something from then.
Another thing is to not loose hope- My friend's a c-6, (16 years post) He finished college, and has done plenty of cool things. (1996 paraolympic bronze... has won more marathons than I care to think about...)
Life doesn't stop, it's just different. Ok, maybe it sucks more, but I've found the "adapt and overcome" theory can get alot of things done.

http://krstofer.org

**kate** · 9 Sep 2003, 3:24 PM

Adrian, my husband has a C-6 injury, now 2 and a half years post. You're doing a good thing by asking others for their thoughts . . . I remember doing the same thing, and one of the most helpful messages I got came from a friend of a friend--a woman with a year-old sci who said this:

"I decided not to think of myself as cord-damaged, but rather as just another athlete coming back from a serious injury."

As a member of these forums, you already know that most of us have more information and expertise than a lot of the people in medicine. Try to encourage this family to use us. My email address is on my public profile, and I'd be glad to talk with them privately.

Finally, I think that what saved my sanity was being 100% willing to let people help me, help our kids, help him. I used to get this comment all the time, like, "It's wonderful that you're can allow so many people to take care of you." And I'd have to admit that I only could accept help because I knew my kids would suffer if I didn't. This is not to suggest that the whole world should get to stand around the bedside wringing their collective hands and getting teary! It is to suggest that there are a LOT of very practical things that others can do to take some of the pressure off . . . again, I'm glad to get into details if your friends would like to hear about it.

Finally, Dr. Young's final sentence on that last post should be repeated hourly: "Restorative therapies will be available." Yeah!

**Adriandisney** · 11 Sep 2003, 9:18 AM

Thanks for all these replies; if old hands can let the newly injured know that their can be life after SCI, that is really supportive and helpful.
Adrian

**The mom** · 12 Sep 2003, 6:39 AM

Adrian, My son, C6-7 would tell him to begin now to do whatever he can do, knowing that "so much more"will come back in 2, 4, 6, 8, 12+ months down the line. If all he can do is weakly push the chair, then push it all he can. When sitting, sit tall and straight - he probably can't now, but he will begin to develop trunk control and give his lungs more space if he practices good posture. If he can squeeze a ball and even if he can't, start squeezing when he isn't doing anything else. If your rehab has a rec room and they are cooking and or playing with clay, go! Not because he enjoys these activities, but because they are exercise for his hands, arms and brain ~ he will learn about adaptive tools he may want to make 12 months from now to start the lawn mower, etc. Learn to self cath, clean technique and get out on the weekends and back into the world. Yes, he can wear a bag, but at 20, he may prefer this goal and it doesn't take any grip at all~ there is a little tool you slide your hand into to hold the cath. Use an Easy Stand at least three times a week in rehab so they will write a script for it. Continue to use it at least that often when he goes home, then learn to independently transfer into it. Go back to school in January. He won't know how he did it, but it is something to jumpstart him every morning, again, the body and the brain. Once he's learned how to function from rehab-PT, find a trainer at a gym. What he can do with them in an hour once a week, followed by he and a helper twice a week, will just amaze everyone! If he is going to be hauling a chair in and out of a car, I would recommend a carbon fiber seating (ADI) ~ we've not had ours long, so I don't know about wear, but it is night and day as far as weight with good support. If he enjoys playing sports, find a rugby team ~ right out of rehab, even if he can barely push~ the warmups, drills, etc. are invaluable and these guys have been there and want to help. Talk about knowing the tricks to getting along in life... [img]/forum/images/smilies/smile.gif[/img] This is a difficult time to be worked through, but a year out is so much is "so much better"!! I wish he and his family the very best. If they are fishermen..., It's hard to catch one, if your line isn't in the water.....

**betheny** · 12 Sep 2003, 11:40 AM

For Will via Adrian-
This is so hard for you, I'm sorry. Been there myself, it's really scary. (c5-6 incomplete 3 yrs)What you need to know is that you can fight this. You can and you must! Go to rehab and learn everything you can. Work harder than you ever have. Your muscles are weak, but every muscle that still has a connection can be strengthened.Watch your skin and your health, you're at a vulnerable point. You don't need setbacks. Learn your self-care;cathing, bowel program, skin care. Read all you can about your injury. Think of what you have trouble with, e.g. feeding youself, brushing teeth, dressing. There's an adaptive tool for all needs, you just have to find them. Keep trying to move stuff below your injury; close your eyes, visualize it, strain till you groan. See if you can get a flicker. There are no guarantees, but I did this and I can walk now. Build those arms, you're going to need them. Don't listen to anyone negative. This is the time to be positive. Prepare for the worst case scenario and know it's do-able, then bust your butt to surpass it. Smile at your family, it will make you all feel better. Look for the humor, it's there. Look at all the people worse off than you, count your blessings. Pray some.I guess that's all my advice-Good Luck!

You'd better get a big gun 'cause I'm not dead yet."
---The Bad Examples

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Advice for a newly injured C7 please

Advice for a newly injured C7 please

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