Desperately awaiting any info on SCI - C7

[Dee L.]

Hi Everyone,

Just registered on this site because my brother had an accident less than 2 weeks ago and am interested in any info that will enable us to help him in any way.

He broke vertebra C7 and has extensive damage to his spinal cord. He his paralzed from chest down and does not feel anything either. He does feel his arms, thumb and a few fingers but also has numbness. He can move his arms and wrists pretty well. Doctors did not sound very optimistic from first time - have since read that this is common.

I'll try to explain whats happened so far as briefly as I can.

His accident (freak accident on a bicycle) happenned on Monday, July 19th while on vacation 6 hours away from Montreal. He was eventually flown to Montreal (where we live) to a hospital that we heard specializes in trauma. He had halo and traction, had 2 operations to put plates to hold everything in place - halo was removed after second operation. Moved out of intensive care - told he could be sent to rehab as early as Monday (two weeks from day of accident).

My brother's name is Gerry and he is 45 years old. Very strong physically (he is employed as a brick layer). He seems to be very strong mentally so far. He has no anger or bitterness and tells us he is ready to work as hard as he can in rehab. He has started sitting in a wheel chair - twice yesterday for over an hour each time. Went to physio in hospital with wheelchair today for 1st time.

His wife, my parents and other siblings feel like we've been in a bad dream since this has happened. His wife, my whole family and his close friends will do all we can and have told him so. I am trying to get any information I can - was on another site that was very helpful - read answers I received to Gerry - seemed to encourage him. Someone from this other site highly recommended this site and said I would probably get a lot more replies - I hope so.

I hope I have supplied enough info. Thanking anyone who can help in advance.


Dee
from Montreal, Quebec, Canada

[skareb]

Hi Dee, sorry about what had happen, my advised to your bro is take really good care of pressure sore, you really don't want that, its really a pest and dosen't seem to wanna go away when you get one. It slows your progress in healing and PT. Its a good thing you found this site we have all kinda experience SCI and caretaker.

Do lotsa research on the internet and keep your question coming.

Objection!

[SCI-Nurse]

Welcome. We are hear to help and try to answer any questions you and Gerry and the rest of the family may have. Ask away!

This is a hard time for all of you. Take the time to get your rest in addition to visiting him as much as you can. You need to take care of yourselves to be helpful to him. Don't do things for him that he can do for himself, and don't give false re-assurances. The amount of return he gets (very possible) is due to the nature of the actual injury, not how hard he works or prays or is determined. Learn as much as you all can during his rehab, and get him on-line to us as soon as possible.

(KLD)

Hi Again!

Thanks for the replies.

To SCI Nurse: We are trying to get our rest but sleeping has been hard to do - getting a little better. Luckily I come from a big family - between Gerry's wife and her family and ours we keep in touch to schedule our visits.

About your comment on "false reassurances". I'm not sure what you mean. From what I've read so far it seems that 2 people can have the same injury but 1 could walk out of rehab and 1 could wheel out of rehab. Do you mean that people with the injury he has will not likely do very well. I've also read that at this stage of the game we should be optimistic and it is important to keep up the hope. Please clarify for me. I'm very interested in any thoughts you have on this because so far you're the person with the most knowledge and experience (being a SCI nurse) that has replied (from all the sites I've been on).

To skareb: I have read a lot about the problem of bed sores. Gerry is being moved every 2 hours. Since he started sitting in a wheelchair a few days ago they have been increasing the amount of time he sits in it everyday. He told me 2 days ago that they want him to sit in it at least 1-1/2 hours each time and a couple of times a day. I would assume that would help with not getting bed sores. Let me know if I'm wrong.

I am glad I found this site - there does seem to be a lot of people with knowledge and experience.

Will keep in touch - take care everyone.

Dee
Montreal, Canada

[~Patrick~]

Dee- bed sores and pressure sores/ulcers are the same monster. They are sores that start from the inside and come to the surface. If they make it to the surface and become open it can be a nasty wound for some time. Here is a good review to help you understand the importance of prevention.

T-10 complete
10/08/01

[teesieme]

Dee, my son is a T5&6 injury but I do have a bit of advice during his stay. Ensure that your brother has a good chair to be sitting in throughout the day and that he is truly being turned every couple hours throughout the NIGHT.
It is very early into this injury. One never knows~ return can come back for years.

[SCI-Nurse]

By false reassurances, I mean some of the platitudes that people use in such circumstances (ie, "everything will be OK", "you will beat this", "when you get to rehab they will make you walk again", etc.). Of course that does not mean to give up hope, but it is also important to talk about the grief and sadness they he and you all are experiencing from such a serious injury.

The real message I think is important is to maintain hope, but also deal with what is happening today in making plans for discharge and needed support systems. If he gets return, that is "gravy" and will only make things better. The good news is that this is probably his lowest level of functioning, and that at his level he should certainly expect to be totally independent in all of his self care with hard work and a good rehabilitation program.

What rehabilitation center is he going to? Insurance nearly always limits the inpatient rehab stay at his level to no more than 6 weeks (which in my opinion is not usually enough), so it will take a fight to make it longer. Meanwhile he and you all need to take full advantage of all the education you can get, and all the therapy he can get, and practice, practice, practice to perfect the skills he is learning in therapy.

I would also recommend that if the rehab center does not give him copies of the consumer versions of the Consoritum for Spinal Cord Medicine clinical practice guidelines that you purchase and download them for his use. This includes important information about functional outcomes, bowel and bladder management, depression, autonomic dysreflexia, etc. Here is the URL:

http://www.pva.org/cgi-bin/pvastore/products.cgi?id=1

(KLD)

[betheny]

Dee-
I'm sorry that you had to find us, but welcome. Please feel free to ask any questions you may have. Your family is in for a fight.

First off, if your brother gets no functional return below the c7 level, his life is far from over. Many c7's live full independent lives. It's good that he is determined to work hard in rehab. That is his first and best shot. He needs to not only work his hardest physically. There is much to learn about surviving and living with SCI; rehab is the place to begin acquiring that knowledge. The Christopher Reeves Foundation is giving away an excellent book with a lot of info on SCI...I'd recommend you order it at www.paralysis.org. They won't even charge you for shipping.

SCI Nurse is absolutely correct when she says to plan for his function level now, and that anything else is gravy.

I always recommend people new to SCI read the article I've linked below, by Dr. Young. He has dealt with hundreds of newly injured SCI's and their families, this articles sums up the answers to the most common questions.

Link to Wise's article

I wish you and your brother the best, and again, please ask any questions you may have. There are no silly questions. If your brother is in a rehab facility with a library, it may have a computer he can use to connect with us. I found that to be helpful when I was in rehab, during the downtimes.

Tell him to work HARD. Good luck-Betheny

C5/6 incomplete, injured Aug. 2000

[cass]

hi dee,

i am C7, work as an aerospace engineer at Boeing, live on my own with my 12 yr old son (born 6 yrs after my injury), drive my van, cook our meals, transfer myself, turn myself over in bed and am 18 yrs post. i'm telling you all this so you can tell your bro life goes on. he may get return, but if he doesn't, he'll still be able to do a lot.

in 18 yrs, the only pressure sore i have ever had was a minor one on my heel. i used a manual wheelchair for first 6 yrs, switched to power when i got pregnant. my cushion is a jay 2. i find the power wheelchair gives me much more independence--i offroad it all the time, can go anywhere pretty much my son goes on his bike.

tell him to hang in there. rehab can be hell and depressing. he'll probably feel better once he gets home. and it sounds like he has a lot of support. that's really important.

one more thing, i think the life forum gets a lot more hits. i didn't see your post here until i read it at new mobility.

[PN]

Dee:

I am not sure if this has been brought to your attention, but before your brother returns to his home, make sure that everything is in place, if possible. There should be a home visit before his discharge and this is the time to see how accessible the home is including the bedroom, bathroom and other areas. You do not want to arrive home and start discovering that you are having problems with bathroom equipment, bed and mattress, ramp for getting up and down, stairs, etc. The Occupational Therapist should assist you and it is better to have these items even if it turns out later that some could turn out to be not needed.

PN