tendon transfer help

[rybread]

i am thinking of getting tendon transfer from posterior deltoid to triceps and i was hoping to hear first hand experience. i would also like any info from Dr Wise on the risks involved. i've been told that it will probably enable me to transfer myself and it will help me with quad rugby. anything anyone can give me would be great. i'm a c5-6 1 year post

[Wise Young]

I have no experience with a deltoid to triceps tendon transfer. I don't know if the deltoid transfer will provide the necessary strength to the triceps to lock the elbow for transfer purposes. I will try to see if I can find somebody to comment on this for you. Wise.

[giambjj]

My son spent 1 week at the Schriners hospital in Philly, where there were a number of teenagers that have had or will have the surgery free of charge. Most thought it was worth the pain and suffering, but one patient did not. My son choose not to have the surgery, because of the amount of scarring and time spent in the hospital were too much for him.
I don't believe any of the patients there that had the surgery could transfer themselves now.

[Scorpion]

OK, it's just my opinion, but the tendon transfer is yet another example of doctors and scientists not understanding what it's like to be paralyzed and using us gimps as guinnea pigs in their quests to be Dr. Frankenstein.

OK, that's a pretty drastic way to see it, so let me give you my more politically correct version: I am a C-6, 10 1/2 years post. I only have a trace of triceps, meaning they can twitch, but nothing more. I live independently, do my own transfers (though using help getting out of cars or high hotel beds), and I can't see real justification for this surgery. It seems to me, with the little we have left as C-6 quads, we want what we've got to work the way it should. Locking my elbows is not the key to my independence, and I wonder how the shoulder joint holds up over the years with about 1/3 of the deltoid taking over for a paralyzed tricep and not fulfilling it's duties as it should. It just seems a very extreme surgery for something I believe isn't necessary, but every individual is different, and he/she must make that decision based on their situation. Also, if and when there's a cure, the idea of having your arms screwed up because you wanted your transfers a little easier doesn't sit well with me. I've met a lot of quads and I don't know any who would go for this. At 1 year post, don't let ANYBODY talk you into radical surgery because they think they know your limitations. Only YOU can know your limitations and eventually how to deal with them. I've lived alone for over six years and was independent with care for 2-3 years before that living at home...with no crazy tendon transfer surgeries. Don't be a lab rat if you can help it, I say.

~Rus

[Scorpion]

In my humble opinion, transfers for a C-6 quad are more about technique than strength or muscle function. I know other C-6 quads who's transfers are much different than mine, but we all get the job done. You just have to figure out what works best for you. I drive a van from my wheelchair so my transfers are limited to getting in/out of bed and on/off my shower chair every other day. I know a C-6 who drives a Mustang, but I'd rather save my shoulders and drive from my chair. Besides transferring in/out of a car or van seat is a pain, and my pants would get crooked or slide down. ugh. http://sci.rutgers.edu/forum/images/smilies/smile.gif

~Rus

[ip]

Scorpion - How do you do bowel care / shower by yourself? What about bladder care. How did you become independent, what was the process. Thanks.

[Scorpion]

ip, those are very involved questions, but let me try and answer them briefly.

To become independent, I first had parents with much patience. http://sci.rutgers.edu/forum/images/smilies/smile.gif As my caregivers for some time, they would wake me up in the AM on a Saturday and Sunday usually and I'd do as much as I could myself, asking them to come in and help when I get fed up in frustration. Transfers came a lot easier when I took the wheels off my hospital bed, and ditched the siderail on the transfer side. I was then able to lower the bed below the height of my seat for getting in, and raise the bed slightly higher than the w/c seat for getting out of bed.

Bladder: I use a condom catheter, and figuring out how to get the thing on and hooked up to the legbag was a bitch, but a HUGE victory as I didn't have to rely on someone else handling my junk. http://sci.rutgers.edu/forum/images/smilies/smile.gif TIP: if you can get and erection, do it before applying the condom cath! Much easier! For catheters, I use Rochester Wide-band as it's the most reliable for me. Freedom Cath is also good as is Holister's extended wear, but the latter are expensive and often not covered by insurance. Self-adhesive are the way to go for quads. The ones with the band of double-sided tape are a HUGE pain when your fingers are paralyzed. Also, while I swear by Rochester's Wide-band, their Ultraflex catheters were NO GOOD for me. They refused to begin to unroll, and when they finally did, they'd usually get mangled and all stuck together inside, making them useless. It amazes me how a company can have a great product and a shitty product. On the rare occasion I need to cath myself for a urine sample, I use a tenodesis splint I got while in rehab. It's an expensive piece of cybernetic-looking metal, but works great. I've actually used it much more for art than cathing, though I haven't used it in a LONG time for either.

Bowel care: Two words - MAGIC BULLET. it works fast and I use a tool that inserts the suppoditory and also has an attachment for digital stimulation. It's as effective as Theravac was for me, but once I found the Magic Bullet, the last piece of my independent care fell into place. I can't tell you how good it felt knowing no one had to help with B.C. anymore.

Transferring on/off the shower chair is tricky because of the nekkid butt. (yeah, I know I spelled naked wrong) So, I put a t-shirt or pillow-case over the sliding board so my butt (or anything else) doesn't get stuck on the way, always being sure to pull my boys up between my legs (don't want 'em getting pinched under my leg in the transfer!).

I realized early on that patience was key, and I didn't have to do things one motion, especially transfers. Let the paras do the fancy gymnast maneuvers. I'd rather keep my record of only ending up on the floor twice in six years and transfer a little slower in manageable steps. Now, I was pretty well coordinated pre-sci, so I imagine this helps, but I think a lot of quads can do more than they've been told by therapists and doctors. The only experts are other gimps when it comes to this stuff, and everybody is different. I don't care if Joe Superquad can transfer with no sliding board and I can't. I've got a system that works for me.

BTW, placing the board under your cushion (I use a Roho) before transferring out of your chair should help keep it in place. I had way too many wipe-outs in rehab because as I tried to transfer out of my chair the board would move and I'd bust my ass.

~Rus

[Wise Young]

I just posted a .pdf list of medical abstracts on tendon transfers, particularly between the deltoid and triceps, as well as biceps and triceps, at http://carecure.rutgers.edu/spinewire/research.html. I will append a commentary later.

[Shaun]

Do you drive from a manual or powerchair? If you drive from a manual chair what do you do about rest behind your head? THANKS..

.......\/PEACE
~Shaun~

[Scorpion]

I drive from a manual chair (Top End: Terminator), and as for the headrest, well I just hope I never get rear-ended by a tractor-trailor, cuz I'll get some serious whiplash, cuz I got nothin' for a headrest. Yeah, I'm playing the odds that I won't get seriously injured twice in my life. http://sci.rutgers.edu/forum/images/smilies/smile.gif

~Rus

[Shaun]

How's your balance and such,do they hang a lot of hardware off your chair for locking it in to position (or do you just not bother with that either).Im askin cause im c6 as will and i've got a six way power seat and by the time im in and out of the seat my pants are always messed up,not to mention the shoulder thing,i work out about 4 hours aday trying to become that superquad you mentioned and driving from the chair seems like it would save a lot of hassle.THANKS for any info..

........\/PEACE
~Shaun~

[Scorpion]

Shaun, the lockdown bracket is simply an H-shaped bracket that bolts to the frame in four spots then has a vertical bar going down to where it locks into the EZ-lock box. It adds about 10 lbs to the chair, I believe, which isn't too bad. For balance, I used to use a chest strap that I'd wrap around me and the chair's backrest, but I got rid of it a few years ago as I realized it didn't do much functionally. With the seatbelt and the tri-pin spinner nob on the syearing wheel, I'm good to go. Plus, I lean on my left elbow on the door for added stability. I don't use any special blinker buttons but I do have a horn button and brights switch mounted on the hand-control bar.

I'll tell you Shaun, being able to 'lock n go' is great, and my chair doesn't look as cool as it did w/out the lockdown bracket, but everything's black, so it's not that noticeable. I've been driving it since 1996, and aside from bumping a car in a parking lot cuz I was in a hurry and not paying attention, I've had one accident (not my fault) and I felt very solid in my seat and was uninjured.

http://www.ezlock.net/

~Rus

[rybread]

there is a company that makes automatic head rests that are electric when you get in the van, they automatically go to a preset position. I think this is the right website. I also have heard of a system for a back rest that automatically goes into place also. But that is not on this website.
http://www.emc-digi.com/explore.htm

[rybread]

I am not looking to get my tendon transfer just so that I can transfer myself. How many times in your life have you not been able to do something because it required reaching over your head and you could not keep your arms straight. Also, for quad rugby, I want to be able my arms up so that I can block. I also think that working extension will help greatly in wheelchair control.

[ip]

Thank you so much Scorpion. Those are exactly the problems that keep me from being independent, and you have already figured them out...

If I may, two more questions - how do you connect the condomn cath to the little plastic connector? Do you use some tool?

Also, what's the tool you use for bowel care, model, etc.

Thank you so much.

[Scorpion]

rybread, I understand where you're coming from, I really do. But looking at the past decade+ of being a quad, I can't see that the amount of elbow extension gained by a radical surgery like tendon transfer would have really improved my situation.

Just realize you're only one year out and a lot of people are going to put a lot of ideas in your head about what you should do, or can do, or can't do, as a quad. Much of this 'advice' you'll hear or have heard is bullshit. My advice would be to talk to as many C-6 quads as you can who are further down the road post-sci than you are. I think you'll find that they know a lot more about life as a quad than ANY doctor or therapist, as well-intentioned as those people are.

Just don't rush into anything.

~Rus

[Scorpion]

rybread, thanks for that link! One of these days, I'm going to get a new van, and I may just get something like the headrest that swings into place.

~Rus

[This message was edited by Scorpion on July 29, 2001 at 11:50 PM.]

[Scorpion]

ip, I use Hollister leg bags and I think the nozzle is cool because it holds the catheter tight once it's hooked up, but it's harder to hook up than other leg bag nozzles. To attach, I wet the nozzle with spit from my palm then wedge the tube in one hand and wedge the catheter tip (after it's on, but you can attache bag first if it's easier) and press it on. It takes practice, but it's possible. The rubber of the tube and catheter has good friction if it's dry, but slippery when wet.

~Rus

[rybread]

I can't remember the name of the web site, but there is a place that does lifts for four by four trucks and I think it is called the Emily lift system. The driver's door of the truck lifts up like a gull wing door and a platform folds down and comes out from the driver side of the truck. One of the options is that you stay in your chair and locked onto the platform and into slides into the truck. The other is data transfer onto the driver's seat and put your wheelchair behind you in the extended cab section. When the door shuts, a seat back comes down behind you automatically. I got all the information on it but I threw away last week.
on another note, do you use voice recognition to type? I am trying L&H Voice Xpress and it seems to work all right, but I have a hard time getting it to say it. It always confuses it for eight. Do you have the same problem?

[Scorpion]

Yeah, I saw that truck somewhere too--pretty cool! I type using a Sharpie marker wedged in my right hand, and I hit the shift key with my left thumb. I sometimes use 'Sticky Keys' (a Windows utility) if I'm typing while holding the phone or a slice of pizza or somethin'. http://sci.rutgers.edu/forum/images/smilies/smile.gif I have L&H Voice Express, but I haven't installed it on my latest computer. It's a cool prog, but it takes a long time to train. I may yet install it on this PC, but I'm pretty fast at typing. I typed before my accident, so it helps to know where the keys are.

i've had troubles with L&H confusing words too. It's supposed to become more efficient the more you use it, but I'm not sure.

~Rus

[This message was edited by Scorpion on July 30, 2001 at 01:32 AM.]

[antiquity]

You're advice is great! I'm a C7 quad and am independent in every way except the bowel program. I agree that you have to do what works best for you, PT's can only get you so far, you'll have to improvise the rest on your own.

I don't transfer with a board, sliding over hard surfaces even for a minute gives me AD. It's not hard for me to drag or lift my 85lb self over surfaces, the only problem I've had lately has been with fatigue. I just don't have the energy to do the 10 transfers a day requered to get in and out of bed, in and out of the shower chair and back into the bed at night.

I have a spastic bladder so my bladder voids on its own or when I crede so I don't need to cath thank god.

I drive a van from my wc with an EZ lock too which is good because I couldn't deal with having to ad a transfer from chair to drivers seat to my already tiring routine.

I also live in an accessible home which makes all the difference in the world, especially for a quad.

A question about bowel care though, I get AD at the drop of a dime, it's most severe when a BM is in order and I have neurogenic bowel. Do you experience AD during bowel care, if so, how do you deal with it or does the magic bullet ease it? I use bisacodyl now. If I could get around this problem, I can only imagine how improved my quality of life would be.

Thanks in advance for answering!

[Scorpion]

Seneca, I used to get A.D. with B.C. all the time when it was done in bed lying on my side. I'd sweat profusely above and below my level of injury, and I rarely sweat below my level. I found doing B.C. on the toilet (over it really on the shower chair) pretty much eliminated that because gravity is our friend when it comes to that. The Magic Bullet is bisacodyl, but the vehicle (the stuff that the suppository is made of) is water soluable whereas Dulcolax and others are wax-based. They take way too long to melt, and they never worked for me. The 'Bullet' usually starts working in less than 15 minutes. http://www.conceptsinconfidence.com/ I got the tool in rehab, and I can't find it anywhere, though I've heard Sammons carries it.

I try not to 'slide' too much when transferring, and when I do, it's usually sliding on the back of my thighs as I'm leaning forward and my butt isn't on the board itself. I've got some meat on my butt due to spasticity and maybe too much pizza, but it does not feel good when my butt bones are right on the board, and I get that twinge of A.D.

~Rus

[Scorpion]

Seneca, you also live in Florida, which is better than up North like New York where I live. http://sci.rutgers.edu/forum/images/smilies/smile.gif I lived in the Tampa area for 12 years (8 post SCI) before moving here, and not only is it flatter down there, the buildings are generally more accessible. Older buildings are a bitch here...I go crazy when I hear "our bathrooms are in the basement." Arrgh! A lot of bars in NYC are downstairs too. Some 'Capital of the World'! New York is behind the times in accessibility compared to Florida, that's for damn sure.

And I can't tell you how many times I've returned to my van to find some jerk parked illegally on the blue stripes next to it, so I can't put the lift down. And in winter, with ice and a lap full of groceries no less! This hardly ever happened to me in Florida, yet it happens a LOT here in New York. I think I bitched enough at the local mall (Palisades Center-the biggest I've ever been to) that they recently put 'No Parking' signs whereever the blue stripes are. Still, I see people parked there with their handicap placards displayed, erroneously assuming it's a 'handicap spot'. OK, I'm going to bed before I get upset. http://sci.rutgers.edu/forum/images/smilies/smile.gif

~Rus

[Shaun]

Your only one year post i would give it some time yet before you have that surgery.When i was in rehab they talked to me about this surgery,they said it would be better for me,1 year after that discussion my triceps came back all by themselves (im 4 days shy of 3yrs).There not at 100% but i keep workin em and there getting stronger.Maybe i was just lucky,but all im sayin is maybe give your body a little more time and you might be surprised at what it and you can do..

.......\/PEACE
~Shaun

[antiquity]

Rybread, I think they push tendon transfer off on all new quads. I'd check out the NESS handmaster before considering surgery though.

http://www.nessltd.com/products.htm