Daughter paralized in minutes

• By FuschiaFan
• Posted December 21, 2007 at 9:21 am

Welcome to our forums. We are sorry you had to find us, but glad you did.

Your daughter's story certainly sounds more like a spinal cord stroke (which usually has sudden onset) vs. TM, which usually has onset over hours rather than minutes. The leading center for TM treatment in the USA is at Johns Hopkins University Hospital in Baltimore.

Regardless of the cause, at this point, moving forward is what is critical. It is unlikely that any treatment at this time will be able to reverse any paralysis. Regardless, it takes at least 2 years, esp. with a vascular injury to determine how much return she might get. Has she had any return at this time?

Where did she go for rehab? I hope it was a major SCI Center. I always refer those under 15 to the Shriner's Children's Hospitals SCI Centers. Is she still getting therapy? Is she totally independent in her own care, including bowel and bladder?

It is important in moving forward to try to not dwell on what she cannot do with constant comparisons, but to emphasize what she CAN do, which from what you describe is a lot.. I know girls with paraplegia who have been cheerleaders. There are so many sports she can still do....basketball, tennis, skiing, sailing, track & field, etc. that she just needs to explore and find what gives her that charge again. You might want to look into a wheelchair sports camp for her next summer. She can have a full and satisfying life that includes a career, marriage and children, if that is what she wants.

It may be helpful to have some brief family therapy to help you all deal with this.

Get your daughter involved in the SCI community....both on-line and through wheelchair sports. Having peers who can be role models for her is one of the best things you can do right now.

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• By nicksproudmomma
• Posted December 22, 2007 at 9:40 am

hi there,
sorry you had to find all of us. my son did have a spinal cord stroke - he is paralized from the chest down. i think what fusia fan is talking about for therapy is called the kennedy krieger center which is next to john hopkins - we live in wisconsin, but do travel to baltimore (kki) a few times per year for therapy. i have been told kennedy krieger is the best of the best. i have seen some amazing things happen there. i would imagine that a mri would be able to tell you if your daughter had a spinal cord stroke or not - nicks had hemmoraged, so it was very apparent on the mri. if you would like more information regarding kennedy krieger or what we have experienced with a spinal cord stroke, please feel free to contact me. also have a website for nick - www.caringbridge.org/visit/nicholasdeyo with alot of information.
best of luck to you....
tanya - nick

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• By nicksproudmomma
• Posted December 22, 2007 at 9:44 am

sorry, i mis read, john hopkins is the best for TM - rehab is kennedy krieger next to john's hopkins. we too have had nick to the shriners hospital in philly for therapy and they are great too.
thanks much
tanya

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• By luckydog
• Posted December 23, 2007 at 4:46 pm

I am so sorry to hear about your daughter. I was paralyzed in minutes in April of this year. It was caused by a Spinal Cord Stroke. I was 28. No know cause, but the theory is that because I had strep throat at the time that it caused it. I did not have the rubber band feeling but rather sever back pain. You often hear people with TM say they had a rubber band feeling, but as stated by someone else, TM usually takes longer to set in. You will probably never know the cause. There are many things your daughter can do to help her bladder and sensation come back… I do acupuncture weekly as well as bladder therapy which consists of biofeedback, exercises, and an FES machine for muscle stimulation. Currently, I have issues with retention and urgency, but I do not have to cath and I stay dry with the use of Detrol LA. I also walk independently. Hot/Cold and pain have not returned. It is to early for you to loose hope of regaining function! Please find you daughter a good neurologist. Also, check out http://sci.rutgers.edu/ there is a section just for people with non traumatic spinal cord injuries and there is a lot of information!

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• By NancyE
• Posted December 24, 2007 at 9:55 am

My son also experienced a type of spinal cord stroke with sudden paralysys from at T5/T6. The short version... He woke up with severe pain, a squeezing of his chest,. Winthin three hours he was paralyzed from the chest down. He was first diagnosed and treated for Guillian Barre syndrome and then transverse myelitis and treated for that as well. Untimately he was rediagnosed at john Hopkins os having a fibrocartilagenous emboism in his spine. He can walk independantly now bladder an bowel continue to improve. It has been almost 16 months for us now and he is still regaining some sensation. If you saw him you may not know anything is wrong. I agree with Luckydog, It's still too early to say what your daughter will eventually get back. Is she walking? Is she going to physical therapy? Try the rutgers carecure site as lucky dog reccommended. It has alot on information that would be helpful to you. I am so sorry about your daughters injury, I honestly know how you feel. please feel free to contact me. Nancy

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• By myheartkayla
• Posted December 26, 2007 at 9:07 am

hi Nancy thank you so much for the information. These physician tell me that my daughter will never regain her feeling. my daughter at times can feel cathing and her legs and feet feel as someone is sitting on them. She just recently had a bed sore toward the end she felt them doing dressing changed but did not express the pain due to ever physician tells her it is phatom pain. She has not been in any type of therapy not aggressive therapy. This is devasting cause I feel as I as a parent have let her down,but I trusted the physician exspecially the one I worked for. Once again Thank you for providing me with positive information I needed it!!!!!
Thank you Kristy

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• By FuschiaFan
• Posted December 26, 2007 at 11:35 am

Your daughter is NOT experiencing phantom pain. Phantom pain ONLY occurs in those with amputations. What she is having is neuropathic, central pain, and it is very real and needs to be treated. Neurontin and Lyrica are the most commonly used drugs, and often tricyclic antidepressants such as imipramine can be helpful. It is very common for those with vascular SCI to both have neuropathic pain and get significant return of sensation with time. Her doctors would know this if they knew a lot about SCI.

She needs to be seen by a physiatrist who specializes in SCI and she needs to get into a formal inpatient rehab program and then transition to an outpatient program. If you do not have a good SCI specialty center near you where she can get inpatient rehab, then consider one of the Shriner's Childrens Hospitals with a SCI Center, even if this means traveling out of state.

Her pressure ulcer also needs proper treatment, and she needs to both learn how to prevent them and get proper equipment prior to restarting a seating program (which also should be directed by experts).

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• By NancyE
• Posted December 26, 2007 at 2:45 pm

HI Kristi,
It is very important to take your daughter to a physiatrist with knowledge of spinal cord injury. She needs physical therapy. The therapy is what got my son walking again. He had inpatient therapy for five weeks and continues outpatient now still. I can't tell you how important it is. Don't feel as though you let her down, you can help her now by seeking out good medical care. It is ok to trust the doctors but do you own research and get involved. Be an aggressive advocate for your daughter. It will also empower you that you are doing something to make a postiive change in your daughters life. You can help her now by fighting for her. Please go to the Carecure site- http://sci.rutgers.edu/forum/index.php there is alot of information. It helped us tremendously in helping our son. Check your private messges on this site I will give you my email address. My son's SCI was Sept 06. I can share with you some of the things that we've done that may be helpful to you. Take care, Nancy

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• By merleganz
• Posted December 27, 2007 at 10:55 am

I feel for you .. In nov. of 98 I was paralzed from the waist down within a few hours..I wokeup up with my left leg feeling like it was asleep by lunch time other one was doing the samething. Shortly after I could not bear weight nothing. My legs were like jelly. I was diagnosed withan abcess on my spine. Lost all from the waist down. Had operation and rehab . Xmas time I went home and wokeup one morning with unreal pain again. Then back torehab and month later finally after many test and xrays and mri found out another 2 discs were infected. Another op I had and rehab till june of 99, with pic lines and all over again. I did learn to walk some but not far or well, with a cane after rehab. Alot of docs had said I would never move a toe again. Fooled them there. Rehab if she has any feeling I say go for it and work hard is worth it, Docs do not know everything. If you need any more info or any questions feel free toemail me at thisaddy. Ty and good luck to you and your daughter

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