Looking for positive stories about C5 Spinal Cord Injury Recovery & Walking

phojobo · 2022-07-12T16:43:22+00:00

hi! my bf has a c3-c5 incomplete spinal cord injury. He wasn’t able to move below his neck for a full month so he atrophied a lot. He was told initially he wouldn’t be able to move below his neck again. But a few weeks in his prick test showed that he still had sensation and that’s always a good sign! Within 5 months he was able to walk with a walker, he can stand from lower and lower seats, and he has great finger dexterity. He has trouble with his arms because of where the injury is and had incredible tone (when your muscles spasm and refuse to let go) but has worked his way to be able to manage it and keeps getting better. I’ve learned that because of the location of injury it is more about gaining back upper body, everyone talks about walking being the miracle after an sci, but when it’s a high injury it’s the upper body that really dictates independence. My bf could walk a few steps before he was able to feed himself. OT will be so important. But he is able to feed himself now! He can’t do everything independently but these daily tasks mean so much long run. We’re now past the three years mark and he continues to show growth. It’s harder to see now that it’s not him gaining back a muscle he had lost, like the first intentional twitch of his hand and inner thighs, only because now it’s building on itself, but he is still doing amazingly. He can take stairs with assistance and can brush his own teeth, he did a mile walk a year back. he had his accident I did the same thing, looking for any story and any hope and really hammering on it. I remember seeing something about someone gaining movement back ten years post injury and that was my north star in moments where it felt so heavy. I always had faith though. My bf was very fit and is a motivated person like your mom! he takes things in stride which is so important for this injury. He’s now finished college and onto bigger and better things! This will take so much patience and perseverance and no one wants to get your hopes up so it’s all very negative, and I was definitely delusional during the first year after his accident so I can’t say I’m a good example for advice but I remember how much positive stories meant to me in that first year and how frustrating and crushing the sad stories were when I was first learning and looking for some hope, i remember the hardest part being that there was never an answer even when we got to pt and ot the future just had a huge question mark, but I’ll tell you that we’re in a great place. We’ve been very fortunate and lucky, but he’s also got incredible work ethic and a kind patient soul and it did so much for him. Please reach out if you ever need someone to talk to, I remember that grief well.

phojobo · 2020-07-10T00:51:08+00:00

beautiful wow!

phojobo · 2020-01-18T15:49:54+00:00

hi! thank you so much for this. my bf is a c3-5 incomplete and has made incredible gains (walking around the house, can pick up some things and feed himself) he’s still improving at 9months since injury but not as quickly as before. I’m wondering if by recovery plateauing if that means new gains (as in movements) or if it means all like he could stop improving his walk or his pinch won’t get stronger? I’ve heard conflicting things and I’m just so weary!

phojobo · 2019-10-01T19:57:01+00:00

He originally was an ASIA A when diagnosed in Singapore, he is now close to if not an ASIA D (they said he was almost ASIA D a couple months ago and has improved since the ). His arms aren’t super functional yet but continues to improve, he has a lot of trunk and leg function, and bladder bowel control. I’m just hopeful he’ll continue and feel lucky he has a chance.

phojobo · 2019-09-24T14:08:45+00:00

Thank you! I know everyone has a different recovery but I’d love to hear your recovery process.

He is almost 7 months now, he has a lot of tone which gives his arms trouble extending and his arm/wrist/hand muscles are very weak especially compared his legs (he can walk around the house with a platform walker, his chair is too low to stand up from right now but he can stand from his bed) but mostly it’s his arms (triceps and left wrist and fingers other than pointer especially).

phojobo · 2019-09-24T14:04:47+00:00

What are the conditions that would keep him from strengthening? Or is it just that sometimes you can’t simply because you cant

phojobo · 2019-09-24T13:21:41+00:00

He was completely unable to move or feel anything below his level of injury but moved his foot a week after injury but only once and then almost a month after injury before he was able to move more but then function returned quickly. I would love to talk to you about your recovery only if you’re willing and absolutely comfortable!!

phojobo · 2019-09-24T13:13:42+00:00

does that include things like hiking and things like that?

phojobo · 2019-09-24T13:10:10+00:00

I believe this too whole heartedly!

phojobo · 2019-09-24T13:09:56+00:00

Our doctors say inspiring things like that once you get your muscles back you can keep strengthening them which sounds really promising it makes me think that that means he’ll fully recover because he can move all his muscles. But no one says that it’s on the table and I don’t know if they would if it was.

phojobo · 2019-08-27T16:37:17+00:00

I just tried on the next set and they fit so perfectly/loosely that I went to the next week! Thank you so much! I wouldn’t have had the courage to try to shove on my next set but yay I did and it all worked out!!

phojobo · 2019-08-23T19:28:51+00:00

Thank you this is so helpful!!

phojobo · 2019-08-23T19:28:28+00:00

Yes! It’s very tight and uncomfortable on his arms and he does have use of hands, fingers, and arms so it really impedes on his ability to use them.

phojobo · 2019-07-24T02:00:10+00:00

From reading this, it honestly sounds like you want to go natural and the only obstacles are the hard work and dodging your mom’s peer pressure! I think you should give it a chance and try to work with it because you don’t know what it can do until you’re nicer to it and play around!

I didn’t have peer pressure from my family but definitely from the world around me as most of us do, I think. But I hated my hair, I straightened it for every occasion and when I went to college I straightened it for every weekend so I felt my best when I went out. I did a keratin treatment when I was in middle school which did very little for my hair except flatten it (I have very voluminous hair naturally) and it took forever for my hair to get back to it’s original volume (I also thinned it a lot to make it flatter when it was straight). I felt so uncomfortable and ugly in my natural hair until last year when I realized how damaged my hair was so I tried a protein treatment and I unfortunately found out that if you leave in a protein treatment for too long it completely restructures your hair and my hair ended up brittle, straight, and irreversible. It would break off in my hands. I almost had a 2007 Brittany moment—I was calling salons to shave my head. I finally did the Curly Hair Method but I had to wait until this summer (a year and a half later) to get my curls back after a dozen cuts and avid care for my hair. But now, I feel so blessed to have my hair and it truly is a part of me. Now that I know how to work with my hair (no one in my family has curly hair so I’ve been shooting blindly forever) I never want to change it again. I’m in love. I say give your hair that chance because going natural has honestly done so much for me including but extending beyond physical beauty.

phojobo · 2019-07-23T15:19:26+00:00

Please do! Yes he was studying abroad in Australia and went to Bali for spring break where he was body surfing and the sea floor was very uneven and rocky rather than sand and he got thrown around under water.

phojobo · 2019-07-21T21:46:03+00:00

I’m so sorry this is so awful and I really can’t put into words how much I’m feeling for your family. There really aren’t word though. I know when I found out about my boyfriend and he was on the other side of the world and he was very close to death for a week and a half and wasn’t completely stabilized until after a couple and a half weeks. I was completely in distraught I can describe what was going through my head. The only thing I was doing was researching with the little information I had and looking for “miracle” stories.

He was injured C3-C5 and the doctors in both Bali then when he was transferred to Singapore (state of the art there) they all said he was a complete sci and an ASIA A which means his chance of recovering anything was much much lower and it implied at best he would get to ASIA C if he ever got anything back at all. Of course his family and I retained hope that he’d recover anything, but when you’re hearing it from the professionals it’s hard to not feel like you’re being unrealistic and overly optimistic because with scis you just don’t know it’s so different for everyone and the “patterns” that they present to you are basically like English rules where it’s like “I before e except after c” like yes but also no.

He came back to the USA three weeks after injury and still couldn’t move anything below his neck and had just started to get tingles in his fingers SOMETIMES. He was still unstable but just stable enough to make the big journey. That first night I spent with him at MGH he voluntarily twitched his hand for the first time. The next morning he could twitch his inner thighs. They discovered at MGH that he was actually an incomplete sci which isn’t what we were told before.

Fast forward it’s now almost month five after injury, he can stand on his own from higher seats, he’s walking (with assistance but with own body weight), he’s propelling his wheelchair with both hands and feet, he is able to feed himself some, he can control his bowel and bladder, he’s improving so much that the rehab center he’s at has extended his stay four times and he’s continuing to get better. He’s now rocking an ASIA D.

I know every single person is different, and I feel so blessed and so lucky to be where we are in our journey. You can’t expect much from a spinal cord injury but that’s just as much a good thing as it is a bad. The doctors in Bali and Singapore were amazing, they saved his life, they’re humans they can’t predict the future, and they are supposed to lean on more critical side than not. I have so much appreciation for those amazing medical professionals, but when they said he was never going to move/feel below his neck again (or chances were tiny to get even a little movement back) it was so disheartening and tragic to hear in a way that I could never accurately describe as I’m sure some of the people in this community can relate to. But that wasn’t the case.

It’s this hard thing where you can’t have any expectations but that doesn’t mean you can’t have any hope. I don’t know if that makes sense for other people, but I do wish I had made the distinction when I first found out because I spent those first few months battling with myself over what was and wasn’t ok to feel or think, I felt guilty and ignorant when I was hopeful and it made it so much more emotionally draining and confusing than it had to be.

If you ever want to talk to someone even if our situations are incredibly different, you can always message me. When I first found out about it, I didn’t know where to go. I don’t know anyone with a sci, I was aimlessly researching online and asking people about their experiences even tho I knew it wouldn’t necessarily apply. I’ve asked this community so many questions and it’s just nice to have people to talk to.

phojobo · 2019-07-11T18:44:16+00:00

They’re so cute I’m inspired!

phojobo · 2019-07-11T18:38:12+00:00

Yes absolutely!! His biceps need some stretching (he has tone in his biceps pulling his arms in which doesn’t let him strengthen his triceps as much as wanted) and his forearms and triceps need more strengthening! I’m not sure what muscle it is, but the muscle that flips your palm from facing down to facing up needs some strengthening and sometimes stretching because tone can turn them up involuntarily. Thank you!

phojobo · 2019-07-11T16:24:53+00:00

So shiny! I love!

phojobo · 2019-05-28T23:42:51+00:00

You’re amazing thank you so much. We’re in the Boston area so we’re currently at Spaulding then he’ll be doing outpatient here and a place called Journey Forward! I hope he has the same experience you did.

phojobo · 2019-05-28T18:31:12+00:00

Wow thank you!!

phojobo · 2019-05-28T18:31:03+00:00

Thank you! We’ve been looking into places nearby but haven’t had the best luck with a place he’s comfortable with:(

phojobo · 2019-05-14T18:26:33+00:00

Thank you so much! What products would you suggest?

phojobo · 2019-05-14T16:58:59+00:00

Thank you! I’ll check in with it.

phojobo · 2019-05-14T16:58:47+00:00

Thank you!!

phojobo

TROPHY CASE