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overwatch
climber
Arizona
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May 10, 2016 - 11:50pm PT
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Stick it!
comment reserved due to Mom's Maxim
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Bushman
climber
The state of quantum flux
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May 11, 2016 - 05:52am PT
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What Cornel said
One more thing Alina, be aware of accepting limiting comments from anyone involved with your recovery. BS comments such as ' you may never walk again or your best hope is maybe a cane'. You won't be able climb again... Anytime you hear that TOTAL BULLSH#T, one need not even give a verbal response... Just silently say to yourself say (I give thanks that I am already 100% healed or something better..now..) this is the mantra - What you Want wants you.....!
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alina
Trad climber
CA
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Topic Author's Reply - May 11, 2016 - 10:50am PT
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cornel: Yes, that's what I'm trying for. I'm a pretty happy and optimistic person by nature. And this incident hasn't managed to dampen that. I've had all sorts of limitations put on me by doctors... but when I hear that, there is a little stubborn voice in my head that just wants to talk back. I say (silently, to myself) "well, I'm going to prove you wrong..."
I'm still working on having that confidence in my recovery all the time, though.
Also, big thanks to everyone who has made a donation. You're helping me do so much more.
Lastly, put this on your calendar: A non-profit whose mission is to help SCI patients is putting on a swim in Donner Lake on September 10th. I'll be swimming three miles! There is also an option to swim less or more (or just cheer and go to the bbq). If any of you are interested, please register and participate! It's good people and all the proceedings go towards the non-profit and helping SCI patients get access to therapy and exercise.
Event information and registration:
https://www.eventbrite.com/e/donner-party-swim-registration-24574153956
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pud
climber
Sportbikeville & Yucca brevifolia
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May 11, 2016 - 11:28am PT
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Nowhere near the same scale but..
After a serious knee injury when I was 26, a surgeon told me "your riding days are over. you will likely need a cane to walk by the time you are in your mid thirties."
Three years later I placed 1st in District #37 open class Hare and Hound desert racing. I'm 55 now and still race. No canes, ever.
Listen to your heart!
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schwortz
Social climber
"close to everything = not at anything", ca
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May 11, 2016 - 11:39am PT
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Good luck and heal fast!
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cat t.
climber
california
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May 11, 2016 - 12:44pm PT
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They focused exclusively on how to manage my current condition. Alina, this is a really interesting/frustrating/telling comment. From my (surely biased, especially as a grumbly scientist) perspective, it has always seemed to me that medical professionals focus far more on managing symptoms than examining/solving root causes. That reality isn't particularly limiting when it comes to minor issues like achey hips and bad stomachs, but when dealing with an extremely severe injury like yours, I can only imagine this is ultimately frustrating--it seems almost like the potential for recovery is written off by doctors simply because it is hard!? It requires a lot of work for the patient--and for them--and perhaps they (1) have little faith in their patients' perseverance and (2) don't feel like putting in the effort themselves. It sounds like the attitude from doctors is, "If you can't be 100%, why even try?" I think that's a damn shame, and it almost guarantees a poor outcome for people who aren't willing to move the earth (like you will) to promote their own recovery.
I'm very glad you have been able to find the pilates, adaptive cycling, etc, and I can't wait to hear about the rehab you're headed to next week. I hope it's great, and that you get the chance to repeat that experience as your recovery progresses. You are a strong, focused woman...I bet you're already swimming stronger than the rest of us land-lubbers who can't get two laps across the pool without gasping like our lives are ending :P
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John M
climber
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May 11, 2016 - 02:33pm PT
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cat.. Its likely a money thing. Its what insurance will pay for. You have to fight for rehab.. the doctors first focus is to get you to be able to deal with where you are now. The later stuff is for rehab. Its a shame that we don't focus more on rehab, but insurances primary focus is to get you home. They don't care about quality of life after. Once you are home then their attitude is its not their problem.
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alina
Trad climber
CA
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Topic Author's Reply - May 11, 2016 - 03:00pm PT
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Its likely a money thing. Its what insurance will pay for. Yes, exactly. I had an interesting talk with my therapist about this.
He explained how reporting outcomes to insurance works. The therapists have to prove that they are doing useful work by reporting progress. What insurance cares about are updates like "patient can now be independent with transferring from bed to wheelchair" and "patient is now comfortable negotiating a 2in barrier in wheelchair" and "patient can now use ramp by herself to get in and out of house." These were the progress reports sent out about me.
I asked if insurance cared about me regaining strength in my legs. They do not. That is not a "quantifiable" outcome, or something. There is no reporting "patient increased quad strength by 20%." I think things like regaining function are seen as being highly variable and not predictable. So the PT can't make it happen and is not given credit, either way, for how my legs progress.
It all makes sense in a weird and twisted way that is completely removed from what is actually important.
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John M
climber
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May 11, 2016 - 03:08pm PT
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Maybe big Mike will chime in and give some idea of how they deal with it in Canada. Because he certainly seemed to have gotten a lot of help.
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jgill
Boulder climber
The high prairie of southern Colorado
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May 11, 2016 - 04:45pm PT
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The therapists have to prove that they are doing useful work by reporting progress
I find this revealing. In my case (age 79, scoliosis, multiple stenosis, herniated disc, etc . . . too many leaps off boulders!) after three sessions the PT said we should suspend our sessions. There wasn't the sort of improvement you mention, although simple walking helped considerably. I found PT to be worthless in my situation.
For the last month I have been able to hike the steep trails up local buttes like I used to, entirely because of my own initiative. It may not last, but I'm pleased at present.
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Clint Cummins
Trad climber
SF Bay area, CA
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May 11, 2016 - 05:35pm PT
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Right, it's a "cost effective" insurance check.
So they show you some techniques, and they are done.
It doesn't mean the improvement stops;
it's just that you don't need their help to do the leg raises, etc.
The strength improvement takes your time and effort.
It might be nice if there was a way to call in occasionally if you have questions.
But lots of such questions can be handled by looking on the web, since you're already intelligent.
With my injury, the one Physical Therapy thing which really helped was stretching out my Achilles tendon (I had a tib-fib fracture along with my SCI).
It took several molded splints with more acute foot/calf angles that I strapped my foot/leg into.
Finally broke through the scar tissue with massage and that tendon pop of freedom felt so great!
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pud
climber
Sportbikeville & Yucca brevifolia
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May 11, 2016 - 06:50pm PT
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jgill,
I had a similar response from my PT when I did my knee.
They said they thought I wasn't progressing after just a few visits and that I should get use to it!
My girl at the time was a yoga instructor and helped keep me limber but the saving grace was bicycling. Swimming was helpful too but, biking everyday gave me back 100% strength and 90% range of motion.
Being an athlete with young muscles such as Alina's will make a huge difference in recovery.
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Largo
Sport climber
The Big Wide Open Face
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May 11, 2016 - 07:40pm PT
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Hi. I didn't have a spinal cord injury but mine almost cost me my leg, I was in the hospital for almost 60 days (five operations), in a wheel chair for 8 months after and I had to keep my leg elevated for nearly 18 months or it would get beat red and swell up like a log.
Long story short, after two years I still wasn't walking well and I had pain when I did. I finally got some advice from a great ortho guy over at UCLA who said that no matter what the injury, the final phase of healing, where you get as close to "normal" as you can - is almost always the outcome of circulation. And mine was bad because I had half the tissue removed from my high ankle to mid calf, and it was replaced with a muscle graft they harvested off my left thigh. Plus when my leg blew up on impact, the plumbing got all fouled up and the blood simply couldn't pump. So he said to stop driving and start riding my bike EVERYWHERE. The constant activity would force the blood in and out of my bad ankle/lower leg and healing would happen.
It didn't seem hopeful, but after a few months everything changed. Now on good days I can walk with no limp. Even hiked up to Yosemite Falls a few months ago.
So whatever you can do exercise wise to get the blood moving, and keep it moving, you will greatly amplify your healing because it can't really happen till the circulation gets better. That's been my experience. And good luck with yours. That's a tough row to hoe.
JL
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mcreel
climber
Barcelona
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May 11, 2016 - 10:43pm PT
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"Long story short" - a good title for a book?
Alina, about the 3 mile swim - I'm impressed. Sounds like you're strong and in shape! Keep going with the positive attitude, I'm sure you will continue to improve.
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alina
Trad climber
CA
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Topic Author's Reply - May 12, 2016 - 02:20pm PT
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For rehab, I think the United States used to be a lot more like Canada. But hospital stay has been dramatically shortened in the last 20 years. Here is the info I found:
"The last 20 years have seen a marked decrease in the hospital stay for neurological injuries. An individual with a spinal cord injury (or other neurological injury) who used to spend 4 - 6 months receiving in-hospital therapy is now discharged in as little as 4 - 6 weeks. The burden of rehabilitation has shifted to the outpatient setting. Unfortunately, outpatient insurance benefits remain restricted and do not discriminate by severity of injury."
In my experience there are good PTs and there are pretty terrible ones. It can be really hit or miss. The hard and frustrating thing about SCI (and this is worse for people with injuries high in the spinal cord) is how difficult it is to work out by yourself. My right leg is still too weak to do much without somebody helping me to manipulate it. I have to rely on a trainer/PT unless I'm swimming or biking. And those activities don't cover all the training/rehab my legs need.
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overwatch
climber
Arizona
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May 12, 2016 - 02:57pm PT
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in regards to the hit or miss nature of therapy and doctors as well I think that is one of the benefits of posting on a forum like this were there are a lot of smart, experienced people.
A reliable referral can save a lot of time money and trouble
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cornel
climber
Lake Tahoe, Nevada
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May 13, 2016 - 06:47am PT
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Alina, I am sure you are aware of stem cell therapy but have you checked out StemCells.inc? Exciting results from their latest creation for healing spinal cord injuries. I would be trying to enroll in their clinical trial if possible. This could be the silver bullet...? There are some incredible things going on in medical research regarding the regeneration of spinal cord tissues.. Good things are happening...
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JLP
Social climber
The internet
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May 13, 2016 - 07:17am PT
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is almost always the outcome of circulation. This is more true for muscle and tissue injuries. Nerves are another realm.
OP - dumping lots of money into therapy sessions and whatever they do for you - it's small compared to what you will need to do for yourself - on your own - with whatever you have on hand. I see you have a bike - good. It's the daily things that go on for months that count. Maybe you need some exercise contraptions built around the house, join a gym that happens to have some special equipment, etc. There's a reason the PT's get cut off at some point by insurance - reality is it's all on you - there's no magic to it, soon you'll know more than anyone anywhere about your particular injury. I like PTs myself, and have been to a few very good ones through many injuries - I get it - but I see it as consulting. I ask questions, check in with how things are going, get some dry needle with electrostim (big fan, look into it) - then it's back to some seemingly boring routines that go on for months and often don't seem like they are doing anything - until one day I realize they did.
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Jeremy B.
climber
Northern California
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May 13, 2016 - 09:33am PT
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There are some incredible things going on in medical research regarding the regeneration of spinal cord tissues.
This is more true for muscle and tissue injuries. Nerves are another realm.
Inflammation is generally a bad thing for the brain and spinal cord, so the normal response to injuries is suppressed. Stem cell therapy for spinal injuries is still a pretty new thing; current studies would be largely focused on safety. There's a brief overview of stem cell therapy for spinal cord injuries at https://www.tempobioscience.com/blog/?p=192, which also mentions some of the ongoing studies. (clinicaltrials.gov would have more detailed info on studies.)
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alina
Trad climber
CA
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Topic Author's Reply - May 13, 2016 - 09:55am PT
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Alina, I am sure you are aware of stem cell therapy but have you checked out StemCells.inc? Exciting results from their latest creation for healing spinal cord injuries. I would be trying to enroll in their clinical trial if possible. This could be the silver bullet...? There are some incredible things going on in medical research regarding the regeneration of spinal cord tissues.. Good things are happening...
Yeah, I've looked into their trials. It all seems promising, but not quite a match for my injury. They are taking patients with cervical or thoracic levels of injury -- higher than what I have. The goal of the phase II trial is to restore arm function to people with complete c-spine -- meaning these patients have no function below the neck/shoulder level of injury. This is very different from being an incomplete at L1. I don't think anyone will want me in an early clinical trial because I got so much function back that I can lose, if anything goes wrong. And also because I'm still early in my injury, so function is still coming back on its own. But hopefully clinical trials like this will lead to therapies that all SCI patients can benefit from.
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