View Full Version : Prognosis C4 injury
09-22-2009, 11:29 PM
My boyfriend suffered a C4 fracture and spinal cord injury about a month ago. The C4 fracture required surgery to remove a bone fragment and replace a portion of the crushed vertebra. However, sustained no other injuries from his accident and was admitted transferred to rehab about 2 weeks after the accident.
His rehab center does not believe in doing prognoses, but that each person should simply strive for the best rehab outcome. This a policy I can understand, since you don't want to give a prognosis prematurely, but at the same time, I feel it is making the rehab process even more of an unknown.
I don't even know if my boyfriend's injury was classified as complete or incomplete. I would guess incomplete, since has use of his arms (in a sling), but not his fingers, and has feeling in his hands and legs (muscle stretching, position, but not light touch). Is it worthwhile to ask for an injury classification?
Recently, my boyfriend met with a peer mentor who was a C5 injury and was still in a power chair, with no use of his hands at all. From a best case perspective, my boyfriend obviously wants to walk again, but with no prognosis given, was the case of his peer mentor was supposed to be a more reasonable expectation of recovery? I know it takes time, and reading the posts on this forum, I can see that recovery does occur throughout the rehab process. He appreciatedly greatly that that peer mentor came to visit, but for motivation wants to be able to meet with people who had similar injuries but also experienced more recovery beyond the level of the injury. Any suggestions for a network to find someone in his local area?
I feel so uninformed about SCI. I read a lot online and have requested information packets, but that has its limitations, and I still have so many questions. For example, my boyfriend is having more spasms in his legs - are there any positive signs of recovery associated with spasms, or really none at all? It's difficult to get any time to speak with the doctors and ask about these things. For me, it would provide a lot of support to be able to talk to a doctor for more than 5 mins and while the clock isn't running as far as medical costs... Are there any SCI support networks that include doctors or the opportunity to talk with a doctor and really understand the medical side of recovery process? I'm very much a detail person, and the not knowing is the most stressful for me...
09-23-2009, 12:26 AM
Marie, what area do you live in? (there must be other sci in the area.) And really, Bless the C5 who came in, no doubt it was a hassle to him but he was there to do what he could to encourage your boyfriend. I admire that.
I am a "Walking Quad". I fractured C3, C4, C5, C6, & C7. I am/was a total Tetrapalegic (but not complete). It takes time for your nerves to awaken. The arms come back first, if they come back, then the legs, if they come back. No one is the same. Everyone is different. I have 100 issues to this day, but I walk so I work on the issues and don't complain. It is not easy. In fact, it is very difficult. But I keep in mind there are those who have it far worse than I, so I am thankful. I am also thankful for anyone who works so that we might all heal.
It sounds as if his rehab center is saying to go for it. Go for all the healing he can. Do not be limited. Why would you want to hear that he will only get x amount of recovery? Is that what you want???? Not Me. I want it to be positive.
Work to help him, not "understand his limits". He should have no limits at one month post. Encourage him to try with all he can to do whatever he can.
Your boyfriend's injury is very recent. His doctor should talk with him for as long as it takes to answer all questions and provide all support.
At a month post surgery, I was barely moving. My legs were like lead. I could not open a water bottle, had no power in my hands. I remember almost 3 months post, when I opened a bottle of water on my own after 15-20 minutes of trying...I cried.
Tell your boyfriend no matter what.. do not give up. Try, Try, Try, Try. NO is not an option.
Kari in Pacific NW
09-23-2009, 01:31 AM
Yes, everyone is different. Unlike the previous poster, my legs work fine, but not my arms. And at one month post-injury, I still had not recovered from the surgery itself. I was overwhelmed with pain and the changes to my life.
I have a C5/6 incomplete injury. At first, I had very limited use of my hands and wrists, and no use of my arms, but I never lost sensation or the ability to walk. I spent 28 days in the hospital and when I left, I could not use a bathroom independently as I could not pull my pants up or down nor wipe myself. I could not brush my teeth. I struggled to write and what I produced looked like the efforts of a first grader. I could barely inch myself out of bed. My balance was greatly affected and I fell numerous times, causing injuries to my face as I could not catch myself as I fell--once even requiring stitches. I could not type on a computer or eat without adaptive utensils. I could not turn the pages of a newspaper.
I am thirteen months post-injury. My balance has mostly recovered. I can use a bathroom independently. Everything is normal except my biceps, deltoids, and shoulder rotator cuffs, meaning I basically can do nothing with my arms unless they are supported on something like a table or counter. However, by using a counter or a table, I can easily brush my teeth, wash my face, brush my hair, apply make-up, wash dishes, cut up food, eat, read, turn the pages of a newspaper, write, use a computer, etc.
Most people do not even notice I am disabled until a situation arises where I need to raise my arms--to shake hands, be handed a receipt, etc. I am still struggling to bathe and dress myself above the waist, and I do not think I can drive safely yet, so I don't. However, every week or every month, I suddenly notice that I can do something that I hadn't been able to since my injury. As much as I still lament the changes in my life, I know that I am very lucky that things aren't much, much worse. I have read on this forum that the average time to adjust to a spinal cord injury is 2-3 years.
My doctors did not give me a prognosis until I was one year post-injury. At that point, they said that I would continue to improve, but would probably not completely recover. Although I was lucky in that my doctors did spend a lot of time with me, they were not always the best resources for answering questions. I found that therapists were often more helpful. As for support groups, I found one in the a major hospital in the nearest large city by googling "spinal cord injury support groups." If that doesn't work, call the biggest hospitals near you.
i think the focus should be on what he can do now, not on what may or may not come back. just take it day by day. no dr., no person can predict the outcome. just let him know he's not alone and there's lots out here to help. his injury is too new for a realistic prognosis.
09-23-2009, 03:06 AM
Please know that the two people here who posted that they can move their legs is extremely rare, maybe one in every 5000 or 6000 injuries can do that. There are all sorts of charts here that will give you a good idea of what function he should get back and by all means, never give up hope that you'll get a ton back, but please make sure that he doesn't get down if he can't achieve the same thing that other people have. We're all different. I am a C-5 injury with a little bit of C6 function in my right arm that allows me to pick some stuff up, but it took me a long time to get that back. They say it takes two years to get everything you're going to get back. I still get something here and there and I'm past 9, just not as intense.
09-23-2009, 12:16 PM
Welcome. It is true that every injury is different. So your prognosis for your boyfriend will be highly individual and somewhat unpredictable. My doctors also were not able to give me any prognosis. I know you'll hear this a thousand times because it's true: continue to believe and never give up. If his goal is to walk again, there will be a way. :) This was me 3 months ago:
... but like the other posters have also said, every injury is different. Best of luck!
09-23-2009, 05:37 PM
Where is your boyfriend? Is the facility truly equipped to handle spinal cord injuries? Most are not. Absolutely ask for what he is classified as. Complete? Incomplete? ASIA score? They may not give the information to you since you are not a family member. He or a relative needs to push DEMAND it. I can tell you first hand from when my son was injured that they will be a pain in the butt. Your job and that of the family is to get him the best care possible -- even if it means being a total bitch. Don't let this slide either because time is precious and getting the right rehab is soooooo important. If necessary, find another facility.
Best of luck.
09-23-2009, 11:20 PM
Thanks for all your input and personal stories.
He is in a SCI Model Center, so I'm not concerned about the therapy. I think it's simply a lack of information getting passed down from the doctors to the people involved. Do you have any suggestion for outside ways to accurately inform myself about SCI? Anything that worked for you? Knowing the questions to ask is half the battle.
09-24-2009, 03:07 PM
I found that the doctors like to make their rounds in the morning and get in and get out before anyone knows they've even been there. I would just wait for them and catch them when I could -- they did have a tendency to be evasive in answering questions. Keep in mind they are charging your boyfriend several hundred dollars each time they cross his threshold, so they need to earn their pay.
Make them tell you if he is complete or incomplete -- but keep in mind that many injuries are initially diagnosed as complete when in fact they are incomplete but that doesn't become apparent until later. My son was in this category.
Also get his ASIA score (American Spinal Injury Association). It is a letter that indicates his level of function. Get his score when he was first injured and his current score -- the letter can change if recovery occurs. There is a lot of information on this site about ASIA scores-- just do a search.
I found the nurses, PTs and OTs to be a wealth of information. While there are many good SCI doctors out there, my theory is that "physiatrist" means "personality of a doorknob" in some ancient dialect. Hopefully you have better luck than we did.
Also, call the Christopher Reeve Foundation (go to their website for the 800 number). They have a fabulous handbook that they will mail out at no charge. If you have trouble let me know and I will send you one (I keep some on hand because I do outreach to new SCI patients in my area).
There is a lot of good information on their website too.
Hope this helps.
Feel free to send me a message if you have other questions or concerns.
Kari in Pacific NW
09-24-2009, 05:48 PM
Thank you to the previous poster who mentioned the Christopher Reeve Foundation. I went to their website and ordered the book.
I also clicked on various articles on the CRF site and learned a lot of things. For example, people with cervical injuries tend to have more recovery than I realized. According to a recent study done at Craig Hospital, 3/4 of SCI patients in Colorado who still had some movement in their legs immediately after injury made significant recoveries. 2/3 of the Colorado patients with cervical spinal cord injuries who could feel the sharpness of a pin-stick in their legs were able to eventually recover the ability to walk to some extent, while 1/8 who could only feel light touch were able to eventually recover the ability to walk.
Of course, the Craig Hospital study is only one study, but it is encouraging, especially for those with incomplete cervical spine injuries.
09-24-2009, 11:28 PM
I'll be sure to check out those resources, thanks!
09-25-2009, 07:23 PM
Also go to our home page and click on the articles by Dr. Young (left side menu bar). You can learn a lot from just reading those. If he is in a Model System SCI Center, he has had an ASIA score done. He needs to insist that he get the results of this exam, now, every month or so, and at discharge.
09-25-2009, 10:34 PM
Good points KLD.
Those articles at the homepage are excellent.