Quads! Hand & Arm Function Restoration Discussion

[Chaz19]

I'd like to get as many opinions and thoughts of people's vision on how to get/strengthen arm and hand function. Everything from stem cell transplants to robotic arms.

How do we get our hands? Are we looking at five years?

What are our choices?

1. Brain electrode transplant
2. Nerve grafts
3. Tendon transfers (only option right now)
4. Chase?? I still can't quite follow the pipeline from lab to bedside
5. Stem cells – plenty to read about here, but what would hold the best chances for just increased arm mobility.

I'm curious on anyone's thoughts – anything – even if it's strange, off the wall of the obtuse – I'd like to read a discussion where people feel free to share whatever they are thinking – forget spelling grammar active versus passive sentences…

Thoughts?

[Tim C.]

I'd like to get as many opinions and thoughts of people's vision on how to get/strengthen arm and hand function. Everything from stem cell transplants to robotic arms.

How do we get our hands? Are we looking at five years?

What are our choices?

1. Brain electrode transplant
2. Nerve grafts
3. Tendon transfers (only option right now)
4. Chase?? I still can't quite follow the pipeline from lab to bedside
5. Stem cells – plenty to read about here, but what would hold the best chances for just increased arm mobility.

I'm curious on anyone's thoughts – anything – even if it's strange, off the wall of the obtuse – I'd like to read a discussion where people feel free to share whatever they are thinking – forget spelling grammar active versus passive sentences…

Thoughts?

Chaz,
With you on this one, I lost patience with living without anything resembling hand function for the past 10 years and it's driven me fucking mad. Legs, abdomen, bladder,..you can keep the whole lot of it when it comes to having to live without hands. I'd cut them off and install hooks if I could. That said, in the order of things on any researchers priority list, for this generation anyway, we might as we get fitted for prosthetics.

[LaMemChose]

I had tendon transfers here, times two. I did not get wrist function on my left, but my hand is in a functional fist. Being able to put things into that hand and have those things stay there (as long as the weight of those objects is not heavy) has been crazy good. The transfers allow me to do things I'd not otherwise do, have a level of independence I'd be otherwise lacking.

I'll never be a concert pianist or shuffle a deck of cards, but I am more functional due to tendon transfers.

[nrf]

Nerve transfers are another possible option. Dr.Brown at UCSD. Is doing them.

[Moe]

My rehab facility proposed me this, but I refused. I was concerned if once the tendons are transferred how the hands would react if a ‘cure’ of the spinal cord arrives afterwords… what would happen then? Would the tendons function ‘cross wired’ restricting full hand/arm function in the future?
Were in a “baby boom” since 2010 for official clinical trials like never before to a ‘cure’ or function gain… some trials already showed good results and still more to come… I beleve it may be still take a few years by the time research is over and gets out in the market, but I still feel it’s worth the wait…

[Tim C.]

Moe, wait and lose, or grab opportunity (pun) and

My rehab facility proposed me this, but I refused. I was concerned if once the tendons are transferred how the hands would react if a ‘cure’ of the spinal cord arrives afterwords… what would happen then? Would the tendons function ‘cross wired’ restricting full hand/arm function in the future?
Were in a “baby boom” since 2010 for official clinical trials like never before to a ‘cure’ or function gain… some trials already showed good results and still more to come… I beleve it may be still take a few years by the time research is over and gets out in the market, but I still feel it’s worth the wait…

get the most out of life now. You don't know what tomorrow brings, wait, yes you do; it'd not a restoration for your hands, the immediate tomorrow anyway.

[Chaz19]

My rehab facility proposed me this, but I refused. I was concerned if once the tendons are transferred how the hands would react if a ‘cure’ of the spinal cord arrives afterwords… what would happen then? Would the tendons function ‘cross wired’ restricting full hand/arm function in the future?
Were in a “baby boom” since 2010 for official clinical trials like never before to a ‘cure’ or function gain… some trials already showed good results and still more to come… I beleve it may be still take a few years by the time research is over and gets out in the market, but I still feel it’s worth the wait…

What treatments are showing recovery of arm or hand function? I may not be aware of them.

[Moe]

What treatments are showing recovery of arm or hand function? I may not be aware of them.

Chaz, I was refering to the current trials like ChinaSCInet and all others that would fix the spinal cord as we all read about here... if I was in the 60s era and/or knowing for sure nothing's gonna come up, i'd consider doing the tendon transfer, but in this day, my gut feeling tells me not to take desperate mesures that I may regret in the future. even if it would take 10 years more but chances that I may have my hands fully functional and strong again. I did ask if the proceedure's reversable, I was told it wasn't.

[Moe]

Moe, wait and lose, or grab opportunity (pun) and
get the most out of life now. You don't know what tomorrow brings, wait, yes you do; it'd not a restoration for your hands, the immediate tomorrow anyway.

\Tim,

I'm happy that it worked for you but I don't feel losing more than I already had but I still manage thanks to extensive occupational therapy and exercise.
A buddy of mine had both his arms butchered for a transfer and he wasn't as lucky – nothing happened. Also know another guy who did both arms and got half-lucky; he gained some function in one arm... I understand that each case is different, but the odds of success haven’t convinced me at all. I believe more in the odds of a ‘cure’ instead, I wouldn’t be in the cure section of this forum if I didn’t believe in it.

Moe

[Isildur]

Hands and arms are usually in the end of the list when you listen/read about cure/treatments for SCI. Is a shame because for Quads they are the very first things in the whishlist to recover.

[Crashbang]

after i was injured, i also resisted the push to have tendon transfer surgeries. my injury was incomplete c-5. i didn't have any finger function at first except in my right index finger and in my wrists, but i missed playing the piano and figured out i could play a one finger melody by picking out notes on a small harp. the strings were vertical between my arms which were propped on a table. it was fun and instantly rewarding to play notes, so i kept practicing and over the years i got much more return
of hand function on both hands.
many years ago i was evaluated by dr. brucker, the sci biofeedback therapy expert in miami (now deceased) and he told me that nerve signals to my fingers were firing simultaneously for both extension and contraction, for my hands there wasn't a problem of no nerve signals getting through, but too much signal and not being able to control it.
you asked for off-the-wall ideas and i would recommend finding a hobby that you'd spend time working on to improve your hand function. good luck, and thanks for starting the discussion.

[KyleP2112]

I suppose each person has to do what works for them & that their comfortable doing...but I'm wary of yet another surgery. Also...I'd be worried about having a permanent tendon transfer...

[Chaz19]

after i was injured, i also resisted the push to have tendon transfer surgeries. my injury was incomplete c-5. i didn't have any finger function at first except in my right index finger and in my wrists, but i missed playing the piano and figured out i could play a one finger melody by picking out notes on a small harp. the strings were vertical between my arms which were propped on a table. it was fun and instantly rewarding to play notes, so i kept practicing and over the years i got much more return
of hand function on both hands.
many years ago i was evaluated by dr. brucker, the sci biofeedback therapy expert in miami (now deceased) and he told me that nerve signals to my fingers were firing simultaneously for both extension and contraction, for my hands there wasn't a problem of no nerve signals getting through, but too much signal and not being able to control it.
you asked for off-the-wall ideas and i would recommend finding a hobby that you'd spend time working on to improve your hand function. good luck, and thanks for starting the discussion.

Great suggestion – I downloaded the piano app on my iPad for fun – and I think this is a great way to utilize biofeedback. I use a knuckle for typing, but have quickly learned "twinkle twinkle little star". Thank you crashbang

[LaMemChose]

\Tim,

I'm happy that it worked for you but I don't feel losing more than I already had but I still manage thanks to extensive occupational therapy and exercise.
A buddy of mine had both his arms butchered for a transfer and he wasn't as lucky – nothing happened. Also know another guy who did both arms and got half-lucky; he gained some function in one arm... I understand that each case is different, but the odds of success haven’t convinced me at all. I believe more in the odds of a ‘cure’ instead, I wouldn’t be in the cure section of this forum if I didn’t believe in it.

Moe

Your friend's botched surgery via a butcher is tragic. The transfers can make a world of difference when properly performed surgically and with intensive PT and OT post op. It takes persistence to maximize what is rerouted surgically. The tendon transfers can mean a world of improvement, especially if you view what even marginal improvements in a forearm wrist, hand and fingers can mean.

For anyone considering tendon transfers, go to a surgeon who specializes in hands. You want a surgeon who has done hundreds of the procedures. Ask how many he/she has done, how often, how many in a calendar year, when the last such surgery was performed, what percentage of his/her surgeries consist of transfers. Ask if it is possible to meet with others who have had the procedures under this doctor.

When undergoing transfers (or any other surgery), check the hospital's and the doctor's infection rates. Ask for the surgery to be performed in an OR where gastrointestinal procedures are not performed. Many doctors know which ORs are "cleaner" and are never used for colonoscopies, colostomies, etc. That's the OR you want.

Check the doctor's record. Do a search to learn what, if any, malpractice suits the doctor has had or is facing. Find out which hospitals have extended privileges to to doctor.

I understand your hesitance in light of your friends poor outcome. I also appreciate you don't want to have a surgery that may be irreversible if a cure comes. Waiting for the perfect cure may mean you miss a lot of life and improved independence you could otherwise have. Don't wait too long as you may wait for a cure that never materializes as you envision.

The fine motor skills necessary for a fully functioning hand will likely be the last to achieve a true cure. Logically, it seems "easier" and more likely gross function would return before those higher, more precise functions requiring finesse.

If you decide to have the transfers, there are a number of us here at CC who have had them. Let us know as we may be able to answer questions you may have.

[Brad]

I had tendon transfers here, times two. I did not get wrist function on my left, but my hand is in a functional fist. Being able to put things into that hand and have those things stay there (as long as the weight of those objects is not heavy) has been crazy good. The transfers allow me to do things I'd not otherwise do, have a level of independence I'd be otherwise lacking.

I'll never be a concert pianist or shuffle a deck of cards, but I am more functional due to tendon transfers.

Who did your surgery? Brad