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Thread: Seeking Advice

  1. #1
    Junior Member Caryn's Avatar
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    Seeking Advice

    I would like to start by saying that this site has been a godsend for our family. I have found out more from the people here than any book or hospital staff could ever convey. Thanks so much to all of you for sharing your experiences and advise.
    My brother ( 24 years old) was in an ATV accident on 04-08-04 that resulted in SCI T 3/4 Complete, Traumatic Brain Injury with 2 skull fractures, 3 cracked ribs, and fractured hips. He spent 5 wks. in MSICU (pneumonia, chest tubes, heel sores, and a blood clot to lung because he could not have thinner due to brain injury). From there he went to rehab at the same hospital. It's a general hospital with out of touch staff and outdated equipment. He has made a remarkable recovery from TBI, with no lasting effects to mention. If only that were true for the SCI. We feel it is a miracle he is here today and are very pleased with his recovery. He seems to focus on getting more function instead of accepting what has happened to him. To me, it makes sense. I want him to fight it. Still, I see his sadness and sense how heart broken he must be. He doesn't open up but I know it's there.
    He spent six weeks in rehab and was released on 06-24-04. He came to live with me. I am married with 3 young children. Our mother is also here.
    He will start outpatient PT this week. He is on Medicaid since he had no insurance. We do not have a spinal cord injury hosptial here. Nor do we have a place that has FES. As far as I can tell, no place like that exists any where near here. I would like to see him able to participate in a program that is using the new approach to SCI. The Model SCI centers and such seem to have a "get you as independent as possible" approach and send you on your way. With the main idea being living life as you are the best you can. That is great and needs to be done as there is no cure to date. Are any of those centers also offering the intense physical therapy that has been shown to help improve the health of someone with SCI and also beleived to help with the recovery of some levels of function? If so, how do you get into one of those places using Medicaid that is a state based program? He is still wearing the back brace and should be able to ditch it next week after an evaluation with Neurosurgeon. We have been told that he will have some adjustments to make without the brace. Will this be something that we can handle or will we need additional help? I guess the main question is where do we go from here? The new PT is at a run of the mill clinic that deals in all kinds of injuries. I was not thrilled when I asked if they deal with SCI and the woman on the phone said " ah, i'm sure we do". LOL
    Any advice or input is greatly appreciated. Thank You, Caryn

  2. #2
    "Accepting" the injury is an unrealistic goal, and one that may hold him back during this period. I am not sure anyone ever accepts an injury like this. The best you can do is remain hopeful for an eventual cure, and move on with your life. Will he be returning to work or going to school? At his level, there is a lot he can do, and getting a job would usually provide him with private insurance that may pay for more post-rehab therapy such as this. Of course he needs to want this, not just family members.

    You are in a state with very limited medical resources unfortunately. Medicaid generally does not pay for out-of-state care, and even in-state Medicaid rarely pays for post-acute rehab programs such as you may have read about in these forums.

    His best bet would be to try to qualify for a research program, but this would probably require travel and the necessity to pay for lodging and travel expenses out of his own pocket.

    How independent is he now? Between a less skilled rehab program, shorter length of stay, and his TBI, he may need more outpatient therapy for a longer period of time. This will require a fight undoubtably. If you can at all get him for a consultation at a Model System Center (such as UVa) this would be advisable. They could set up a program for him that could be continued by your local PT.

    It is unlikely that he will loose any function coming out of his brace, but his balance will be different and this can impact his functional activies, requiring him to learn to do some things differently. We always recommend a short period of intensive therapy for this time.

    Keep in touch, and get your brother on-line here ASAP too.

    (KLD)

  3. #3
    Member bberr's Avatar
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    SCi-nurse, CTip11
    I had also the same attitude during the first months after my injury. I could not accept my injury and had focus on regaining the most i can, which i did. Now i know i was also lucky because without the right nervaxons intact i couldnt walk or feel the way i do again. I also remember how depended i was from doctors and PT´s prognosis, meanings. Some of them were neutral, they were afraid of giving me any kind of positiv expectations, because the opposite could also happens. Others answered with their heart and said: "we expect that you will have the possibility to take up again the most of the activities you did before your accidense, but with a lower tempo.". I chose to believe the last ones and this kept me up during a very tough period in my life.

  4. #4
    Caryn,

    Thanks for posting. Your brother is a lucky man. I am very impressed by your description of his condition because it illustrates a degree of understanding of the situation that is uncommon for a family member so early after injury. I agree with KLD. Here are some additional comments.

    TBI complicates SCI in several ways.
    1. Because two conditions are influencing his recovery, the time course and extent of recovery are less predictable than somebody with just SCI or TBI. Does he have any motor or sensory function, bladder function, or pain below his injury level? Can he feel his bladder and anal region? Does he have spasticity above his T3/4 injury level, i.e. in his arms? From your description, i.e. that he is in a brace (as opposed to surgical correction with rods of his spinal fracture site), I get the impression that he does not have as severe spinal cord injury. Is that true?
    2. TBI is often associated with emotional lability (mood swings) and memory loss that may interfere with motivation and concentration. The sadness and depression associated with SCI alone is bad enough but TBI adds an emotional overlay that should be taken into account when planning his rehabilitation. It is important to remember how much of rehabilitation is actually education concerning how to take care of the paralyzed body, the discipline and planning that is needed to reorganize one's life to deal with the injury and becoming independent, and expressing his frustration and anger over the situation. I am glad to hear that he is not "accepting" his injury and is focussing on "getting more function". In my opinion, that is a good sign. He must be a strong person.
    3. Please encourage him to ask questions here on this site. Most people who come from from the acute rehabilitation face similar problems of adjustment and finding solutions to continue and extend recovery. Everybody has to face and solve similar issues of body image, self-worth, sexuality, and getting a job. These are some of the most important and difficult problems that face somebody who has had TBI and SCI, particularly at age 24.

    Wise.

  5. #5
    Senior Member teesieme's Avatar
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    CTip11, I wish I had more time to go into detail with what I have learned and what I know we did right by my son coming directly home and what may have given more opportunity
    otherwise...but I will try to advise minimally now. If your brother is offered any type of help/assistance, take it!!! Example: an aide coming into assist within the home, even if it is for an hour or two a day this will give him is the "inside" connection to meeting his needs and what may be out there for him as far as rehab/equipment goes. If a social worker were a part of his in-patient, (I am assuming there would have been because of the Medicaid,) stay in contact and make sure they keep in contact with him, don't let that go by trying to do it all yourself. In other words make sure that your brother has an advocate or case manager that looks out for his best interests all around.
    Don't ever accept the SCI as final, finding a balance between recovery and maintaining what he gains, along with adjusting one's life around it and getting on with things until...that is the key. It will be healthier for all of you in the long run if you can find that medium.
    My advice with rehab and what isn't available within your area, I will write to you later about...some of it, things that will be good for him as in pt, you can do at home or within your area with some research and guidance as the how to's also.

  6. #6
    Senior Member teesieme's Avatar
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    Okay, home therapies we have tried and succeeded with as far as thier possibly being a part of my son's recovery so far and the muscle mass he has kept since, personally, I think they have are part of the reason why...
    My son is T5&6, who has gone from Asia A complete to Asia C in the past two years.
    What we focused on at home was to do rom each and every day, furthering it with my trying different leg lifts, stretches out on myself, paying attention to the muscles I used and then I applied them to my husband who would acknowledge the same, then applying them to the kid. Then he tried a portable Electrical Muscle Stimulator while out-patient. There was a lot of negativity about even trying it, but we repeatedly asked and his muscles reacted to it, so it worked for him. If we wouldn't have been able to acquire one through insurance, there are less expensive machines of this type that will give a similar effect from what I have learned. Another thing we did was work with the sensitive parts of his legs, his being his feet mainly. In the beginning pretty much anything would set them off, it was like he could touch them for the most part whereas I couldn't? So little by little I would handle them carefully working the toes and the foot itself, like gently turning them out (something I had to do when he was little and one foot wanted to turn in) and ever so carefully working those toes down as they wanted to stay upwards, even the toenails were as such but in time they both came back down the way they were~ etc, etc. I am able to tug his sock away from his toenails without it setting off anything besides hold onto his foot without a reaction for the most part. A standing frame is a must as you probably know. Once that was being used regularily, he applied some leaning to each side and lowering every ten minutes or so for like an adjustment of sorts. I know when I stood in it for too long and didn't allow myself to adjust in ways, my legs would get uncomfortable, etc. Oh, I did this too with the EMS to see what it did also. Then swimming. Get him in a pool if you can, somewhere with a pt. even for one session to show you some things. Hoping there is a pool with the accessibility of a ramp or a lift. A weight bench that works for him would be great too. It took me awhile to find one that he could work out on and transfer to with minimal assistance,was reasonable in $ and safe but they are out there, it is a matter again of taking the time to search for what is going to work for your brother and his own personal gains/limits. The spa tub we bought to replace my clawfoot gives him some circulatory benefits, now he does sit ups in it since the back is at an incline somewhat allowing him to do so. My son uses leg braces to practice his balance but many use a therapy ball on a mat, etc. Working towards this with the thought/idea of retraining, has brought my son return at home it would seem and has been verified in rehab. elsewhere with things like biofeedback.
    And as much as it is said that one should get back to work or school quickly, I think that a balance needs to be found while one is so early into their recovery too. I mean heck there is a lot perhaps going on, gotta get back into the fun things too!
    I do wish we would have pursued V/R a bit more in depth within our state a year back now with the cuts, at least he could have taken on-line courses and would have been on his way, instead of being placed on a waiting list now but he got a job this last week part time and is checking out colleges that may offer help in getting started instead.
    Hope this helps or gives you some ideas. It hasn't been easy, as at first my kid rebelled a bit at the thought that I was seeing things he didn't know, were or just might be, or I was just wanting them too much like he didn't,
    which wasn't what I meant or saw or was trying to get him working towards...hard to explain so yeah, it is tough, knowing and not knowing but some things have come about little by little.
    We also had to find a balance between us (one that we still have to work on together and around one another) but it has brought him a long way! He focuses on his todays and now while aiming for his tomorrows and future~ I hope your brother is able to do so also with the help of good family like you.
    Well, take care and I hope this gives you some ideas/help.

  7. #7
    Junior Member Caryn's Avatar
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    Dear KLD,

    Thanks for your help. My brother had one year of school left at the time of injury. He had taken some time out of school to persue a life long dream of racing. He had only finished building his ATV and was in the process of breaking the engine in when the wreck happened. We have all suggested returning to school or comming back to work many times. He's not able to focus on the future, as in, SCI and future with it.
    He is fairly independent. He still needs help with some things because the "turtle shell"as they call it, limits his range of motion. I will definetly check into UVa. Maybe they will be able to work with us. Thanks Again, Caryn

    Dear Sleipner,
    Your insight into this is very much appreciated.
    It helps to know that there is someone there that is going through the same nightmare. Although, I wouldn't wish this on anyone. Best of Wishes to You, Caryn

    Dear Dr. Wise,
    I regret that I am required an understanding of this terrible condition. The doctors at the hospital here were very distant and unwilling to share their great knowledge. Everything I have learned has been fought hard for. The bulk of it comes from YOU and the wonderful people here! I have stacks of print outs that helped to pass away hours in the MSICU waiting room.
    He is T 3/4 complete. He had the rods and screws surg. 5 days after injury. The brace he is wearing is due to come off next week. The EMTs on scene said his legs were still moving enroute, but have not moved since except for spasms. We were shown a fracture of T5.
    He has no motor or sensory function below injury level. As well as no bladder and bowel function. Although, when he put on a pair of shorts the other day that had an inner lining in them, he could feel the lining against his legs. He put his hand on the exact spot where the elastic was on his leg without looking! He still cannot feel a touch. Does that mean something to you?
    He does have some memory loss due to TBI. It is more like patchy loss. He needs to hear part of the story before being able to remember the actual event. On the other hand, he can remember alot of things on his own without promting.
    I have mentioned this site several times and for now he is more comfortable with me at the keys. He is still withdrawn and unwilling to talk about it. When he feels himself getting depressed, he asks about research and trials. It's like, as long as he knows someone is out there searching for a cure he doesn't have to accept this as a done deal.
    I have been given some good advise here and we will get to work on it. I feel empowered just knowing all of you are here. I hope I can transfer that feeling to him.
    Thank you so much for your support and efforts. In my opinion, doctors like you are a rare find. Our family is very thankful for your work and compassion. Sincerely, Caryn & Family



    Teesieme,
    I have no idea how I have made it this far. I can only IMAGINE what it would be like if this were for my son. It is almost all I can handle to watch my brother in this situation. It is impossible to make my mind even consider this happening to one of my children.
    I definetly agree with you on the balance. He is not able to give much thought toward a future life with SCI yet. He spent 5 weeks in a drug induced coma and awoke to paralysis. He hasn't even had 2 whole months to think about what to do with the rest of his life. If you think about it, people spend 20 years or more figuring that out. This injury has turned his life inside out. He has to totally regroup and most likely reroute his plans. That takes alot of energy, drive, and self esteem, unfortunately those are all qualities and functions that have not returned yet either. Right now he is trying to figure out how to get from AM to PM with the ICs, BMs, RXs, ROMs, PTs, and OTs that all come from having a SCI.
    The equipment ideas are great. I have considered some help such as an aide, since I am right at having to climb in bed next to him!! LOL! I do work with his legs. It is the one task he does not mind. The PT he will go to tomorrow has a pool. I'll get him in one if I have to do it myself. I will also check on EMS. We are already trying to get a standing frame. The rehab we were in stood him up 3 times in 6 weeks. It was treated like a novelty. I knew better and pushed for it more. His feet are also sensitive. Just touching them will trigger a spasm. It is much better after ROMs.
    Thank you so much for your advise and time. I'm sure to need more and hope to talk to you again soon. Take care and best of wishes to you and your family. Sincerely, Caryn

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