Welcome to the Acute SCI Forum

[Wise Young]

Spinal cord injury is one of the most devastating events that can befall a person. When it happens, family and friends often go to the internet for information and encounter a bewildering array of complex information and advice, some old and out-of-date. The CareCure Community is uniquely equipped to provide information concerning acute spinal cord injury because over 70% of the members of this community have gone through the process, understand what is involved, and can offer in depth advice and insights. This forum is intended for people, families, and friends who have had a recent spinal cord injury. Please ask questions and we will try to answer your questions as best as we can.

I just posted an article concerning what to ask and answers to frequently asked questions on http://carecure.rutgers.edu/spinewire/Articles/AcuteSCI/AcuteSCI.htm on the main carecure community site. Please look there for more detailed information about acute spinal cord injury.

Unlike other forums on this web site, this forum allows people to read and post without registration. This is because the registration process may be too slow and people may want to ask questions immediately. In the next day or so, various articles will be posted here and on the main http://carecure.rutgers.edu/spinewire/ site that will provide links both to this site and related site, summarizing answers to frequently asked questions.

Our hearts are with families and friends who have spinal cord injury.

Wise.

[This message was edited by Wise Young on 02-27-03 at 23:01.]

[Chris Chappell]

Another great service of CC.

This should be of great use to many.

[Linda]

Nice Dr. Young. Very nice.

[Curt Leatherbee]

Does this mean we are not going to get cured anytime soon Dr. Young? http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

Great idea Dr. Young. This site has always been especially good for new injuries and this new Forum makes it that much better.

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[krajaxa]

Great Idea, Dr. Young!!!

[SlomoScott]

just my 2 cents...
great idea, but will newly injured persons or their families know that "acute" means "recently" injured?
Maybe, maybe not. Try to remember that most people don't have a science/medical background.

[KLD]

Good point, SlomoScott.

Dr. Young, how about this title?

"New (Acute) Spinal Cord Injuries"

Also, I don't think we have really defined what should go here and what under the Care forum. An example might be the current thread in the Care forum about vent weaning.

[Curt Leatherbee]

The other thing that comes to mind, is what is the defination of Acute? 1yr, 2yr?

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[mazey]

What a great idea! And yes, I think those first few weeks, months and year are so devastating this will be very helpful. Some of our topics are too complicated and chronic for someone coming for the first times. Linda

[rye1945]

I wish I had discovered this forum at the time of my injury instead of 4 years after! Everyone has been a great source of information and community. A recently injured person, his/her family and friends will be served well by the new addition and the forum in general.

[mikemccarey]

Does anyone know what level Pat Rummerfied's injury was at and whether it was complete or incomplete?

[Chris Chappell]

cousinmike, excuse my ignorance but who's Pat Rummerfield?

If you can provide us with a little more info maybe we can help answer your question.

[mikemccarey]

Pat Rummerfield is the first spinal cord injury quadrapelegic to fully recover:

http://rx.magazine.tripod.com/rl_20001018.htm

http://www.patrummerfield.com/

The article mentions he was injured in the c3 c4 and c5 region, but it doesn't go into details as to whether it was complete or in complete, whether he had any sensation below the neck right after the accident or if he only began to feel things after rehab weeks to months later. He now works with Dr John McDonald at the University of Washington in St. Louis.

My cousin was recently injured in a wrestling match in NJ, an account of it can be found in the news section of the forums posted by seneca I believe.

Any info anyone can tell me would be appreciated.

[Curt Leatherbee]

Interesting Story about Patrick Rummerfield. Not sure if I agree with what Dr. Macdonald says about trying harder and getting function back, nobody tried harder than me and I got nothing back.

It is interesting though the theory about two injuries of the spinal cord creating regeneration. If this prove true, who knows, maybe someday they will be creating secondary injuries in new injuries to produce recovery. It would be an interesting study.

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[Wise Young]

CousinMike, I assume that you are referring to Carl Riccio. If so, I have spoken to the family. They are one of the reasons why I felt the need to put up this forum and why I posted the article. Wise.

[betheny]

To a new family who may have found us-we are so very sorry that you've been thrust into this voyage. You've come to the right place for help. If you don't read one other thing, Dr. Young's article (mentioned above) is crucial. I think we all wish we'd had such a resource. May God be with you.

[SCI-Nurse]

Wise. What another great resource that people can tap into! Thank you so much again for the wealth of information you impart to others. PLG

[dunwawry]

This is in response to Curtis, although I notice his post is a couple of months old. I agree that for some folks, no matter how hard they try, they will not regain function. However, if function is going to return, I believe that extra effort in participation in therapy, i.e. working your butt off, does improve the amount of function that will be regained, especially in the early months. I was told this early after my injury by an Indian doctor who had specialized with SCI patients in India using Eastern medicine (a friend of my sister's). This may be anecdotal but I ended up gaining far more return than the rehab staff predicted I would. I also thought it was sad how many of my fellow patients would either refuse their therapy sessions, or go and put in minimal effort. I have no medical evidence to back up my theory, just my own gut feeling that had I not worked so hard, I would not be as well off as I am now. I tend to think there may be a window of opportunity for retraining to occur, or for other parts of the nervous system to take over the function of the damaged portion. I would be curious as to what Dr. Young has to say.

[Vahidweb]

Dr. Wise Young,
http://sci.rutgers.edu/forum/images/smilies/smile.gifYou are so great!

Vahid (New Member)

[Wise Young]

dunwawry, I wish I knew what the window of opportunity is for recovery of function. While it is true that the most recovery usually occurs during the first six months after injury, I know people who have recovered a year or more after injury. It probably depends on the severity and type of injury, whether there is demyelination and how much non-use there was. What I do know is that there is insufficient justification for doctors telling patients that they should not expect any recovery more than a 6-12 months after injury. I know of sufficient exceptions of this rule that this pessimistic rule should be put away and not be used to deprive people of hope and motivation to work hard at recovery. It is true that not everybody recovers. On the other hand, it is also true that if people are discouraged and do not try, fewer people will recover. Wise.

h.resch@aon.at
Dear Sir,
I would like to ask for some advices:
I have a patient with traumatic C5 fracture and lesion of the spinal cord with complete paraplegia from C6 downward. The patient is 19 years old and sustained a motocross accident one week ago. We have performed surgery immediately after the accident in order to remove the body of C5 which narrowed the spinal cord about half of its thickness. The fracture then was stabilised by bone block and plate. The patient had also received high dose cortisone immediately after the accident from the rescue team.
On the MRI 5 days after the accident the spinal cord has enough space and seems not to be interrupted but shows edema and a little bit of a central bleeding.
I would like to ask you for some recommendations in the treatment. Has somebody of you something we could give to the patient even if it is in the experimental stage? I hope you can give me some advices!
Thank you
Dr. Herbert Resch
General Hospital Salzburg, Austria

[SCI-Nurse]

Dr. Resch, I applaud you for seeking out resources beyond the usual avenues for your patient. If he is within the first 15 days of his injury, I would certainly look into the Proneuron program in either Israel or Belguim.

http://www.proneuron.com/

You can learn more about this and other therapies in the research phase on the Cure forum here as well.

(KLD)

[Wise Young]

Dear Dr. Resch,

I apologize for not having responded to your post earlier. There are two experimental therapies that are currently in clinical trial for the subacute period (2 weeks)of spinal cord injury:

1. Activated macrophage transplants (Brussels)
2. Alternating current application (Purdue)
3. Ambulation training.

The last is active in Switzerland, at the Balchrist Rehabilitation Center. I also know that Dr. Milan Dimitrijevic in Vienna has been actively studying the use of epidural stimulation of the L2 locomotor pattern generator. Finally, there is much interest and effort being expended on intensive exercise therapies directed at preventing "learned non-use". Several of the articles that I have posted on our main server may be of interest to you. For example, you may be interested in:

The Effects of Intensive Training on Motor Recovery (http://carecure.rutgers.edu/spinewire/Articles/LocomotorTraining/LocomotorTraining.htm)

Wise.

Wise Young, Ph.D., M.D., Professor & Chair
Dept. of Cell Biology & Neuroscience
W. M. Keck Center of Collaborative Neuroscience
D224 Nelson Lab, 604 Allison Rd., Busch Campus
Rutgers, the State University of New Jersey
Piscataway NJ 08854-8082
tel: 732-445-2061, fax: 732-445-2063
email: wisey@pipeline.com; http:sciwire.com

[goomoontwo]

A great help, thanks

My niece is 5 years old and she became paralyzed in her wrists and hands. She was outside and told her mom her back was hurting and then went back outside. About 30 min. later she went to the restroom. My sister heard her crying, so went check on her. Her back was hurting and she couldn't open the door. The doctors did 2 mri's, spinal fluid test, cat scan, blood tests, and an x-ray. They didn't find a thing wrong with her. Is there anything else out there that could of contributed to her paralysis? Her back stopped hurting her within 15-20 minutes after my sister found her crying in the restroom. She is gaining strength back in her hands slowly. She is going through therapy and got to back to school after 2 weeks. She is able to straighten out her fingers on the left hand but still has no strength in it yet. Her right hand has enough strength to hold light objects.

[Wise Young]

My niece is 5 years old and she became paralyzed in her wrists and hands. She was outside and told her mom her back was hurting and then went back outside. About 30 min. later she went to the restroom. My sister heard her crying, so went check on her. Her back was hurting and she couldn't open the door. The doctors did 2 mri's, spinal fluid test, cat scan, blood tests, and an x-ray. They didn't find a thing wrong with her. Is there anything else out there that could of contributed to her paralysis? Her back stopped hurting her within 15-20 minutes after my sister found her crying in the restroom. She is gaining strength back in her hands slowly. She is going through therapy and got to back to school after 2 weeks. She is able to straighten out her fingers on the left hand but still has no strength in it yet. Her right hand has enough strength to hold light objects.
strum, it is not clear what your niece had but one likely possibility is ischemia (embolization). If a cause is not found, the condition is called a transverse myelitis. I am glad to hear that she is getting some functional return. I will post more when I have time. Wise.

[naamodt]

Hi,
My wife had a sudden, still unexplained fully, stroke of her spine, C7 complete, just about 6 months ago. We spent over 2 weeks in a local hospital with no diagonosis. We ended up at Johns Hopkins. They were amazing on every level and are certainly (all due respect to Rutgers) I believe the best at understanding Neuro issues that are very hard to explain. If you want more info on our experience, please email me at naamodt@eventstrategygroup.com.
Take care,

Norm

[Wise Young]

Norm, I agree. I have great admiration for the Johns Hopkins group and believe that they are not only great diagnostically but are very compassionate and take good care of their patients.

Wise.

[Max]

Dr. Wise Young,
http://sci.rutgers.edu/forum/images/smilies/smile.gifYou are so great!

Vahid (New Member)

Wise is not only great-He is Akhbar:D

[JerryF504]

h.resch@aon.at
Dear Sir,
I would like to ask for some advices:
I have a patient with traumatic C5 fracture and lesion of the spinal cord with complete paraplegia from C6 downward. The patient is 19 years old and sustained a motocross accident one week ago. We have performed surgery immediately after the accident in order to remove the body of C5 which narrowed the spinal cord about half of its thickness. The fracture then was stabilised by bone block and plate. The patient had also received high dose cortisone immediately after the accident from the rescue team.
On the MRI 5 days after the accident the spinal cord has enough space and seems not to be interrupted but shows edema and a little bit of a central bleeding.
I would like to ask you for some recommendations in the treatment. Has somebody of you something we could give to the patient even if it is in the experimental stage? I hope you can give me some advices!
Thank you
Dr. Herbert Resch
General Hospital Salzburg, Austria


WOW! I wish my doctor would have taken this kind of intiative. I might have gotten something back. :(

[TAsMom]

I agree it is devastating. And where to start? I've searched google with such strings as ... new paraplegic paralysis second story home ... it seems every time we find some hope it is dashed ... financial stuff is incredibly difficult. My daughter ... ugh... I can't tell the story right now... anyway ... driver had no car insurance. It all just hurts.

[SCI-Nurse]

TAs Mom, please ask away. We want to help.

(KLD)

[Mombo]

TAs Mom, we welcome you and share your pain. I am also a mom and let me tell you this whole thing really sucks! This is a great site and you will get lots of help, info, and support. Don't be afraid to ask, vent, and cry - we have all been there!

[donpar]

hi also a resent sci family retired long year but hoping for better days c2-c3 injury

[DustinRogers]

Hi T-7, 2 months post and just regained bladder function, no control, but i'm still intermittently cathiterizing myself with very little return but the rehab doc's been gone for a few days now and i was just wondering about a texas/condom cath and if anyone regained control after function.

[SCI-Nurse]

Dustin, please see my response to your question about this on the Care forum.

(KLD)

[Analee Rupp]

Hi All! C6 C7 was told initially I would be paralyzed from my neck down, I would be long term health care, I would be on a respirator, and I would never regain anything. I breath on my own, I have the use of both arms, I get new sensation all the time, but ya, my poor husband has taken on the roll of caregiver. I'm not sure why I'm so blessed, but I KNOW I will walk again! Love & Light to all Analee

[xJdinox]

Thanks Dr. Young! That was beautifully written. Spinal cord injury is rough. It's a lot of maintence and can sometimes be very frustrating. I like how we can support one another on here. I think that really helps with the healing process even if you have had your injury for awhile. I am a t6-t8 incomplete para. I was in a car accident 7 yrs ago. My friend was driving, and we swerved and hit a tree on his side. He only sustained a sprain wrist. If anyone would like to talk, please feel free to PM me.
- Jess

[dvamarquis]

Like many, I am new to this subject.

My dad has been suffering from lower back pain most of his life due to what he considered "normal aging". Six months ago, his pain levels increased significantly and finally led to hospitalization twice in the last month. When he entered, they couldn't figure out what the problem was, but knew that he had some kind of systemic infection. Upon his second visit to the hospital, they did an MRI and learned that he has a spinal abcess (the technical term he used started with an N, but I dont remember what it was). The doctors told him that he needed emergency surgery and were to move him to another Level 1 Trauma hospital that night. Unbeknownst to me, he went AMA that night and went home. This has been about a month ago. In the last 3 months I have seen my dad go from a strapping 230 lbs to a mere 160 and its scaring me. He is not keeping most food down, can barely walk, etc...

He is telling me now that his doctor is telling him that if he doesnt have this surgery, he is going to die. He also apparently told him that the surgery has a limited chance for success and that it could paralyze or kill him. He has made up his mind that he will not be having surgery. He "doesnt want to be cut up just to die on a table" kind of thing. While I don't agree with this, it is absolutely his decision. My dad is prone to exageration, but also downplays things to try not to worry me so I dont know for sure what were looking at. I know that the abcess is for real. and that the systemic infection is in the bone. Theyre apparently going to install a pik line for antibiotics and he will see an infectious diseases doctor this week.

If he doesn't have surgery, what can he/we expect? From the reading ive done on this site, it appears that the deterioration in health can go fast or slow and I really dont want him to suffer. Knowing my father as I do, I could see him just taking massive amounts of pain killers and trying to wait out death/or even possibly considering suicide if it gets too horrible.

I know no one can tell me how long the "downhill" process is, but any thoughts you have would be absolutely appreciated!

Thanks to all in advance!

[Newsjunkie]

Hi all
My brother in law sustained a c4-c5 injury at the end of January. He has made great progress and came out of ICU after about five weeks, trach removed and now breathing fine on his own. He has weak movement in his left arm at the moment and none in his right but we hope the physio and occupational therapy will help him to build strength and regain some function. We are based in Ireland and have been over and back a few times. We saw him out in a wheelchair for the first time last weekend and it was great to see him upright although it seems to be uncomfortable for his back.
This is a fantastic forum with brilliant support and I am hoping to be able to pass the ideas and hope back to my brother-in-law.

[Wise Young]

Hi all
My brother in law sustained a c4-c5 injury at the end of January. He has made great progress and came out of ICU after about five weeks, trach removed and now breathing fine on his own. He has weak movement in his left arm at the moment and none in his right but we hope the physio and occupational therapy will help him to build strength and regain some function. We are based in Ireland and have been over and back a few times. We saw him out in a wheelchair for the first time last weekend and it was great to see him upright although it seems to be uncomfortable for his back.
This is a fantastic forum with brilliant support and I am hoping to be able to pass the ideas and hope back to my brother-in-law.

I answered in http://sci.rutgers.edu/forum/showthread.php?p=818559#post818559

[Cancankwok]

Hi Dr. Wise,

I am very pleased to be able to seek information from this channel at this helpless moment. My 29-year-old sister got a car accident while travelling Scotland on March 24th. She was severe injured and was just out of ICU few days ago. Doctor says that she gets spinal cord fracture in C4-C5 and broken spinal cord from C6-C7. She has undergone several operations for internal bleeding, broken leg, chest ribs and neck since then. And she will has another one for her front neck so as to allow herself to sit up as soon as possible. However, doctor here says given today's medical resouces / technologies now, my sister will not be able to walk again. My parents, sisters and my sister's friends who have flown to Scotland from Hong Kong after the accident, were shattered apart after hearing the bad news.
Dr. Wise, could you please advise how we can do next? Is my sister really hopeless even in the future according to what doctor said? We understand that my sister can't leave Scotland until she has no problem breathing her own. And our plan is seeking doctors in China and Hong Kong, actually wherever are possible for treatment. Is there any doctor who has started stem cell transplant in Asia?
Thanks for your taking time for us.

Candy Kwok
email: candy.kwok@pmp.com.hk

[JDP]

Hi everyone! It's been a long time since I've been on this board...over 2 years as a matter of fact. I was browsing on the web tonight and came across this site. It was like going back in time for me, beyond two years ago to a time where I was so uncertain about my future as a quad (or tetra for you 'pc' folks!).

I decided to check it out again and read this post of the man who was told by his doctors that this was it, no more recovery, yadda, yadda, blah, blah, etc., etc., etc... :zzz:

I had initially found Dr. Wise on the web so many years ago, when my fear of what the future held was nearly overwhelming...like so many of us, I was a very physically fit woman, strong and independent. 11+ years ago, I suffered a sci that changed my world, and as a c6-7, I became completely dependent on others for my most basic needs. What a trip that was, and I suffered from humiliation, rage, extreme vulnerability, depression at times, but it was all overshadowed by FEAR! My family shielded me from the worst news, and I later learned that the barriers posed could have been so great that the nursing home option HAD been tossed out there for consideration. My family became my shield, as I said, protecting my vulnerable mental state, which allowed me time to absorb all the stuff swirling around me, the doctor's diagnosis, and more importantly, the prognosis! I heard the same crap (pardon the slang but that's what it was!), and was even told that I better start dealing with reality and understand that I was never going to move from the neck down; that this was it...once I stopped crying, I got ticked and then became determined to not allow those words to define me or my abilities.

So my long-winded reply to your post is to please tell your brother in law:
Do not allow others to tell you what you will become, what you will achieve...be your own advocate, your own champion! I'm not saying that you will succeed in your journey to a recovery or that you will or will not walk again. I am simply stating that if you want to try, try!

Newly injured folks are bombarded with all kinds of medical info, and learn that there is this whole community that makes you feel like a visitor to a strange land...it will take time to get a handle on this, but you will. You will become acutely tuned in to you, and after awhile, talking about you will bore you! Yet, you must become knowledgeable, you must tap into the hope that you can regain function and just simply try. It will take time and is trial and error. It's hard, no doubt, but so worth it! Acceptance of the status quo in sci's leaves one stagnant, and that is a terrible fate. I'd rather go out swinging, you know?

Dr. Wise, about 9 years ago, I had emailed you about recovering function and using exercise/repetitive motion. Your reply gave me the green light that I had been searching for and I found it very motivational. To paraphrase, you told me that the two year window of recovery was not definite, that all sci's were unique and that exercising and using repetitive motion had been successful in returning function in lab studies using rats. You did not dampen my hope like all the other professionals, and I am grateful to you for that. :applaud:

While I may not be walking (yet!), I have made so many gains physically and mentally that the w/c is no longer an albatross...I don't seek out sci websites exclusively or anything like that. I work and live like everyone else, and every once in awhile, I come back and visit, occasionally throwing my two cents in. :D

To all newly acquired sci's, hang in there and just keep moving forward. Your mind will catch up with your new reality and you will be ok if you fortify it with positive, healthy thoughts. :)

One last thing...if you do not agree with a professional, a doctor, a therapist, an orthotic (sp?) dude, and even your w/c and seating person, speak up! I learned the hard way to say NO, and it cost me two surgeries and lots of bedrest about 6 years ago. I wish someone had told me it was ok to question/disagree with them if I felt they were wrong...they were as it turned out.

[paultuttle]

Hello everyone!!!,I'm new around here as my close friend has been recently shot in the neck by accident w/a 40 caliber,his c4 and c5 have compression fractures and he has been paralyized below the shoulders since the accident about 5 1/2 weeks ago.he's in a nursing facility and is not getting the proper SCI rehab IMO,basically NONE!!!!,What can I do ??????he has parents and they seem overwlemed and don't know what to do(they're the ones who chose to put him where he is now)I gave them a bunch of info from the reeves foundation and there not being very proactive IMO,anyone have any suggestions where to start he has no insurance~thanks abunch~Paul

[SCI-Nurse]

Paul, you should probably continue to post on your previous thread as it will get more attention.

http://sci.rutgers.edu/forum/showthread.php?t=121578

(KLD)