New to paralysis

New to paralysis

Posted by Penny_2153495 on Oct 13, 2013 8:20 am

My son was injured in a fall last week, he fractured his L1, and has no function below the waist. Doctors don't give us much hope that things will improve, although the spinal cord was only compressed and not severed. I want to know as much about his injury, the possibilities of full recovery, and any information anyone can share. Today he is 8 days post-op, when do any signs of feeling start to occur? Doctors say nothing! I want to be able to do anything I can to help him. I have been doing PROM since the accident, and today will start manual lymphatic drainage with massage. I am in need of advice, support, and guidance on this journey.....

RE: New to paralysis

Posted by zuzu on Oct 13, 2013 4:48 pm

Penny, I'm sorry this happened to your son.  A week isn't very long in terms of his injury for doctors to make their assessment about his recovery of function.  It takes a lot of time for the swelling to go down around the area of injury, for the nerves and body to calm down from the trauma of the injury and stop reacting in an inflammatory way.  All that means that he could be experiencing changes in functions for the next couple of years, and with the more aggressive therapy that's used now in rehab he could have small improvements for several years.  That being said, each spinal injury is different, and there's really no way to tell for sure.  Some people have lots of functional return, and some have little change.  You'll learn a lot by reading stuff on these forums, and while he's in rehab talking to other people.

Massage and lymphatic drainage can help a lot, but talk to rehab doctors about how aggressively to approach this at the beginning.  I suspect the idea of stretching is the best since paralysis causes muscle spasms which draw the limbs inward.  My mom has a massage therapist and finds it really helpful with her continuing treatment (she's a C3-5 incomplete quad with no functional movement from the shoulders down, injured in a fall in 2002).  It's cool that you'll be able to do massage therapy for him without the extra cost.  

The best info you can get is on this CRPF website and the Miami Project for a Cure.  There are lots of other places with info, but these two are the most reliable and have good information support.  This is the weekend so know that more people will reply to you starting tomorrow.  You should contact the CRPF Info. Specialists who can answer lots of your questions, and get the online or print version of their Paralysis Guide which is packed with useful information and is free.   You may want to set up a CaringBridge site which helps your family keep his friends and family updated with his progress by just one post, and lets them send him messages of support.  If you do, or just for some encouragement, check out the story of Jack Jablonski, a young man who was injured in December of 2011 in a high school hockey game with a C2-3 complete fracture.  I think his recovery will encourage you and your son.  

There are many great rehab places in your area, push for the best and most aggressive rehab your/his insurance will pay for and make him stay as long as possible, at leas three months if they will.  Know that for Medicare purposes, the guidelines changed in February 2013 so the person no longer has to show progress to be kept in the rehab program, they can stay if they are maintaining or staying stable at their level of function.  As far as equipment accept anything they offer, especially before Dec. 31, 2013.  Ask them now what he will need and if they will please prescribe it ASAP so it's delivered and billed before the last day of this year, because next year not only will co-pays go up, but he will have to pay sales tax on the full price of each piece of equipment that he purchases, even when insurance pays for it leaving him with only a co-pay.

I hope this gets you started.  Again, I'm sorry the accident happened, but know that next year at this time things will be better for all of you.  Really they will.  Deborah

RE: New to paralysis

Posted by prc_donnal on Oct 15, 2013 2:48 pm

Hi Penny,

Welcome here! 

I, too, am so sorry to hear of your son's accident.

Zuzu has given you really good info and advice.

I am an information specialist here at the PRC. Please contact me so I can send you our new-injury package of information, including info on the top-ten questions about spinal cord injury, clinical trials, home modifications.

My email address is and my phone number is (800) 539-7309. My extension is 7202.

My best to you and your son!



RE: New to paralysis

Posted by Steven_1757358 on Oct 15, 2013 4:14 pm

Try and get him into the NRN program. That's the Neuro Recovery Network. It's the weight bearing treadmill training. I was able to participate for nearly 6 months. I made good progress but didn't regain any function of my legs. However I did see a couple of other patients that were there at the same time I was that did regain the ability to walk. 

Also, try out the Astra Tech LoFric catheter. It's a hydrophilic catheter. I went from a UTI about every other month to only one in three years.

Good luck.

RE: New to paralysis

Posted by Pamela Henline on Oct 15, 2013 5:41 pm

There is lots of time for hope.  My spinal cord also was compressed.  At 6 weeks I was able to move a toe and now walk with a cane.  Most of the steps of my recovery are chronicled in my book, avail on Amazon,  by Pamela Henline, title Walk,  Don't Run   .Much can change and there is plenty of hard work ahead.  Good luck.

RE: New to paralysis

Posted by Peter on Oct 16, 2013 3:34 pm

A compressed L1, if that is a correct diagnosis, offers options not available to an incomplete injury or severed cord. One week? I'd guess that's somewhere in the acute or subacute stage, meaning not long-term chronic. Be patient for nerve recovery. 
I had an L1 injury in 1968 and today completed 45 min. of Functional Electrical Stimulation (FES) at one of the Courage Center facilities in Minnesota. I had about 50-60 percent function return after my injury, but it took a year or so. (Then lost it to a spinal syrinx 15 years later, but that's another story.)
As others have suggested, The Miami Project or any of the Reeve Neuro Recovery Network locations would be exceptional for treatment and rehab. He may even be eligible for a clinical trial at Miami. The eligibility is strict, and timing is very important. If interested, move on it now.
Read the material you receive from the Reeve Foundation. It may the most constructive, supportive information available.  
Good luck. 

RE: New to paralysis

Posted by Jacque on Jan 28, 2014 1:32 pm

Dear Penny....i feel you pain and frustraton - so much so that I had to write about it.
My son's accident was 2010. I TRIED EVERYTHING too. And am a Massage Therapist. My son is not walking today. But I will say that he is adjusted so very well. And has even become a father - making me a very proud grandmother. - using his own at home techniques.
Penny, what we've learned is that there are no guarantees from the medical world.
We have had good experiences with the Miami Project as mentioned in the previous post. But over all we have decided that we have to mostly take matters into our own hands, and keep experimenting.
I grew weary of researching endlessly for the solution, the fix to my son's paraplegia. I focus more now on findings ways to make his life more convenient. he devised this for his bowel program he conceived 2 babies - at home using his own electrostim device.
I AM HERE TO SHARE YOUR FRUSTRATION. DON'T EVER GIVE UP but also don't miss LIVING the LIFE that is available right now. I was headed that way, obsessing about finding my son a way to walk again. I still believe it can happen, somehow, someday....that's what mothers are for.
Sending you encouragement.
Jacqueline Dunkle

Re: New to paralysis

Posted by Pharmascience1 on Nov 13, 2017 2:26 am

Phytoscience Double stemcell 100% orginal product works incurable disease and organ
Double Stem cell treatment is by far the biggest of the medical world and the most important discovery techniques by which to treat incurable diseases and organ. Phytoscience Double stemcell is one of the most effective medicine to treat fatal diseases and deadly organs.
For more visit

Tag Topic

Subscribe to Topic

Would you like to be notified of updates to this Discussion Topic? Subscribe and you'll receive email updates of new posts.