A quasi downer.

[antiquity]

Sigh. I met with a PT today for an evaluation and was again dissuaded from having tendon lengthening surgery. He thought that my reasons (standing, using an FES bike) weren't strong enough to warrant the risks involved with surgery.

In the meantime, he suggested Bledsoe (sp) braces for my legs to hold and maintain any extension I gained through stretching. My knees have 45 and 50 degree contractures. A conservative estimate is that it would take 6 months to achieve 10 degrees of extension. He didn't think I would ever achieve full, normal extension. He recommended against aggressive stretching in my legs fearing the possibility of a fracture or muscle tear because of the osteopenia.

The Neuro-Pulse worked fine. He was impressed with how easy and user friendly it was. He stimmed my quads at 51 which produced a contraction strong enough to move my lower leg forward slightly but geez, the AD was bad. I started sweating immediately, my other leg started spasming wildly and my lower back muscles tightened, it was very unpleasant to say the least.

I don't know where to go from here. Since everyone seems to think I'll die on the operating table I don't know how else to regain the lost flexibility in my knees. I'll play around with the FES machine more but there's not much point in bulking up my legs if I'll never be able to stand. Oh well. http://sci.rutgers.edu/forum/images/smilies/frown.gif

[Wise Young]

I am a little concerned that a PT is advising you about surgery. Have you talked to a surgeon about this?

Wise

[-scott-]

Originally posted by seneca:

I'll play around with the FES machine more but there's not much point in bulking up my legs if I'll never be able to stand. Oh well.
seneca!! don't say that. I agree w/ wise... get a better (well, 2nd, more professional) opinion, plus don't be dismayed. you can't expect night & day results... I don't have much experience here, but from what I understand, it'll be a slow, but very worthwhile process. hang in there, take care of yourself, but keep persevering.

[antiquity]

Yes Dr. Young, two physiatrists and the latest was a neurologist. The fears are infection and clotting/circulation problems and the formation of pressures sores which could become infected under the cast I'd have to wear for at least six weeks. I was also told that I could peddle a bike without full knee extension and that standing would only aggravate the scoliosis. I responded by saying that I doubted that would happen since I could always wear my brace while standing. Oh and regarding the tendon lengthening, the PT said that he had seen many people with CP who had the surgery only to have the contracture return.

But maybe the bracing will work. Thanks Blueduck.

[Chris Chappell]

seneca, hang in there girl.

1. Wise is right.

2. Scott is right.

3. Contracture didn't happen overnight so why would you expect immediate results?

Slow and steady, it will probably take months but I'm sure you'll make progress.

I'm pulling for you seneca.

[larwatson]

We need to get you a new PT. And yes, call Arnie at NI. He's seen this stuff, and if there's a way to get the Neuro-pulse to help break through the contractures he'll know how. And if he doesn't he'll probably know who to point you to (Steve Petrofsky). After 3 and a half months my hip contractures are almost gone . . . no stretching . . just range of motion using the gait trainer, the standing frame, the FES bike and my trusty push ups.

Good luck my friend. My prayers are with you. As always, with SCI patience is key.

[antiquity]

Thanks everyone for the support and encouragement. I feel a little more confident now. I'll definitely call Arnie on Monday. Regarding the FES and AD, I've decided to ramp it up enough to get a contraction only, not to trigger movement. That should alleviate most of the pain and discomfort.

[antiquity]

Update.

I've spoken to Arnie at the NeuroInstitute twice in the last week or so and here's the advice he's given me which incidentally has been much better than the advice I received from my PT.

I mentioned the AD while stimming and he suggested that I start off slow with just enough stim. to get a good contraction. He suggested I do my quads, hams, a. tibs. and calves for 15 minutes a day every other day to build up a tolerance. To my suprise, I stimmed without getting dysreflexic. I realized that my PT had ramped the level up too high. I'm stimming my quads at 27 (the recommended starting level is 25), he ramped it up to 55 which explains the discomfort and AD I experienced. I've been stimming comfortably for a couple of days so I wondered if it would be ok to stim. daily for a longer period. Arnie didn't see a problem with it as long as I didn't become uncomfortable so that's what I'll be doing. I'm still waiting to hear from my PT about the braces.

[Lshall82978@yahoo.com]

Originally posted by seneca:
Since everyone seems to think I'll die on the operating table... (

Why on earth would people think that? Let alone have the gall to say that to you?? http://sci.rutgers.edu/forum/images/smilies/eek.gif http://sci.rutgers.edu/forum/images/smilies/frown.gif

[antiquity]

Lindsays, no one said that to me directly. Most of the doctors I've seen about problems that can be corrected medically have been discouraging because of fears about intra and post-operative complications.

[Curt Leatherbee]

When I first started E stim I use to get bad Dysreflexia too Seneca, then after I while it went away, now I hardly get it at all even under 100% stim on the FES bike. Like Arnie said, start out slow and work up to it.

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[Claire]

Hi Seneca,

I agree with what everyone has said. Slow and steady wins the race. I've been stretching for almost a year and have gained 15 degrees in length. I have 30 to go and i'm determined to take my legs to their limit which means all the way to me. I've gone through 2 plateaus and i expect there will be several more. I talk to my legs and tell them "you will not beat me"; " i will do this everyday until you give in". Luckily, i have no AD when using the neuropulse. I have small, but nice development in all my leg muscles and my butt. my transfers are already easier because of the little extra cushion on my cheeks.
Many, if not all of us have been told by professionals this or that is impossible, unattainable. Many are limited by their closed thinking. I've come to know I am the one to determine what i'm capable of. Your body may not handle surgery well. If 3 MD.'s tell you that, i'd listen to them. But, slow and steady exercise, a well balanced diet, attitude and determination will get you far. The final outcome, one way or another, standing or sitting is your health will be improved. Never say never.
By the way, my fes bike arrived today. :-)

Claire