T12/L1 what to expect?

[diane2]

My daughter had a ski accident and sustained an incomplete L1/ T12 injury.She is ASIA C. Post 8 weeks, she has strong hip flexors, moderate quads, and beginning glut and hamstring engagement. She has returning sensation into her feet but no movement in her ankles and toes. She can now do pivot transfers and some weight bearing. She feels pins and needles before sensation returns more normally. Is this typical? We have had NO predictions by her doctor or PT and even though we know each case is different, the silence and lack of hope is anxiety producing. My daughter is working very hard in PT and using a standing frame 1/hr per day/ swimming 2x/wk, gait machine and regular PT as well. Does she have a poor/fair/good chance of walking even a little bit?

[Karen'sMom]

Diane - My daughter, Karen, is a T12, almost three years since her accident, and she is walking. The doctors would only say that "time will tell", whether she would ever walk again.

It is a long, hard struggle for a body to learn to walk again, but I would say that your daughter has a good chance of doing it since she is ASIA C and has some things starting to work again. Karen was in the Hospital for 3 months and then was lucky to have outpatient Rehab for almost two years. She kept setting her goals higher and higher, and the Rehab agreed to keep working with her. She is one of the very lucky ones.

She has also gone through 3 sets of braces and has just been fitted for her 4th set. She went from wheelchair, walker, two canes, one cane, and now can walk (in certain circumstances) without a cane. Encourage your daughter to keep working at it. There are some on this site that have gotten recovery after many, many years of injury, with some very intense Rehab training.

I am sorry that your daughter has this injury, but there is certainly hope for her. I am glad that you have found this site. It is invaluable!

Best of luck to your daughter and to you.

Darlene

[woman from Europe]

Well, she sounds better off than me and I have been walking for 36 years.

I believe she will make it http://sci.rutgers.edu/forum/images/smilies/smile.gif

TH 12 incomplete 12-12-69. I am still a walker but I do not know for how long time.

[MikeC]

I'm an incomplete T12 and I can walk with a walker. I just started rehab again and can use crutches in rehab; still not steady enough to use them when alone. My legs would itch before feeling would return. It sounds like your daughter's return is faster than mine. I'm 7 months post and am still getting feeling back in my legs and feet. The hardest thing for me is balance (I have none). I also have very week hip flexors and almost no glut. So, it sounds like your daughter is progressing really well.

T12 Incomplete - Walking with Walker, Oct 2003

[diane2]

Darlene,
Thank you for your info and kind words. I feel quite in the dark about how rehab progresses and my daughter's PT just tells me to be her mom and not her physio, but I would be more comfortable knowing even in a general idea how things progress. So thank you for your story. My daughter is a real figher, but it is so hard to be the mom and stand back.
When your daughter was first injured, did you have anxiety and depression? I am fighting it the best I can, but some hours are dark. My daughter is coping well with determination and a positive outlook.

[LauraD]

Hi, I am mom to Heather age 12, T-12 complete almost 4 years post. It sounds like your daughter is doing great. Heather didn't really regain anything after the accident.

I think it has been the hardest thing I have ever gone through to see my child injured and know there is really nothing I could do. Be there for her but be strong. Know that there will be days she will get mad at you and may say things out of anger. I have been there plenty of times with Heather.

When she was first injured I had many times that were dark and I wondered if we would get through it. We had a doctor tell us the day after her injury that she could still lead a "normal" life. Yes, now it is a normal life for a person living with SCI. It does get easier with time but there are still days that are tough. She still rides her horse, and the four wheeler and is still a giggly goofy 12 year old.

I wish your daughter all the best and hope that she keeps recovering.

[duge]

diane2
I am a T-12 incomplete
luckily I can walk but I have great pain in my feet. the dr's say's it's nerve endings. It took me about 3 months to work my way out of a wheelchair. you got to just keep on giving it your best and hardest try. Can she feel her feet? that's where the pins and needles come into play for me and it does hurt. Just tell her to keep working and never let up!!
Duge

T-12 incomplete 10-3-02

[Wise Young]

diane2, in my opinion, your daughter has a good chance of walking.

She may continue to have some weakness of muscle groups and may need to have specialized rehabilitation to try to strengthen those muscles. Weight-supported ambulation may help accelerate her recover and improve her gait. The use of functional electrical stimulation, prostheses, and intensive exercise also helps. I am glad to hear that she is doing swimming. She is doing the right thing, being in an aggressive physical therapy program.

Please keep us up to date concerning her progress. I also suggest that she keep a daily diary of her progress. Many people don't realize how much they have recovered if they don't write it down. Memory can be biased.

Wise.

[Kaprikorn1]

Diane...please join our topic in the Life Forum titled "SCI T-12"

Kap

"It's not easy being green"

[amanda]

Not that I am an expert, or that you haven't heard it before, but I can't express enough the "time will tell" cliche. And just remember SCIs are like snowflakes. I am a 21yo female 15 months post. If your daughter needs anyone to talk with or just gripe about this new found way of life feel free to give her my e-mail or yahoo ID. It's in my profile.

When you get to the end of your rope, tie a knot and hang on.
Franklin D. Roosevelt

[Broknwing]

Diane-
I too have an L-1 incomplete sci. Mine was just six months ago & I'm still learning as well. It sounds as though your daughter is doing quite well already. I just started aquatic therapy a couple weeks ago & can already tell the difference in my balance. I personally feel that this has been the most beneficial of all the therapy I've had. I'm starting to get around w/a walker. May I recommend that you get her a 4-wheeled walker w/a seat. This has helped me in a number of ways. One of which, as strange as it may sound it's more of a self confidence thing. It looks a lot nicer & makes me feel better about using it. If you want more info on the walker I'm using feel free to ask.

If your daughter want someone to talk to, feel free to give her my e-mail. Also, I still have the tingling pain in my feet. I've found a couple different things that help it.
Where are you guys at? Is she in a CARF accredited SCI center. I've learned the hard way that the one I was in wasn't CARF accredited for SCI. You've already gotten a lot more information & advice here than we got the entire time I was in the hospital. If I could be of any more help, please let me know.

'Chelle

[MikeC]

I'd like to second what BroknWing said about the walker. One of the best things I did was get a 4-wheeled walker with a seat and a basket (I can check the mail again). I can't maneuver into the seat without holding on to something but any old mailbox or post will do. I've increased the distance I walk and my coordination since getting this walker.

T12 Incomplete - Walking with Walker, Oct 2003