Spinal Cord Injury

Hi @suzanbaltaji and welcome to Mayo Clinic Connect. My heart goes out to you and your son.

Here is some information from Mayo about Neurogenic bladder and bowel management: https://www.mayoclinic.org/tests-procedures/neurogenic-bladder-bowel-management/about/pac-20394763

I also thought you might want to read this article about it.
Neurogenic Bowel Dysfunction in Patients with Neurogenic Bladder: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5510247/

I would like to invite @jenniferhunter to the conversation to get her input on what is going on with your son

Have you discussed electrical stimulation with his doctor?

@suzanbaltaji Suzan, First of all welcome to Connect. My heart goes out to you and your son with the difficulty of his injury. I am a spine surgery patient and I had a ruptured cervical disc that compressed my spinal cord twenty years after a whiplash. I had cervical fusion spine surgery at Mayo.

If your son wanted to inquire about an appointment at Mayo Clinic, you may use this link.
http://mayocl.in/1mtmR63

There are links below about treatment of patients at Mayo with electrical stimulation devices and spinal cord injuries, as well as research with stem cells.

Mayo has been involved in a lot of research with spinal cord injuries and regenerative medicine. Here are a lot of links about research and clinical trials for spinal cord injury. I remember reading about an electrical device that bridged a severed spinal cord by sending the electric signals past the area of the injury. There has been so much I could find about this research at Mayo, so I have copied a bunch of links for you, and there are videos that further tell the stories. Some years ago, I remember being so impressed at the progress actor, Christopher Reeve, made with his spinal cord injury after breaking his neck. It showed me what could be possible to see him be able to walk in a swimming pool and to be able to breathe on his own own without assistance. I also shows how will power and determination can go a long way. It is promising that your son can walk with braces and crutches. Perhaps there is something here in these links that can bring some hope for further recovery. It is very exciting for me to read about the progress of medicine in helping with spine injuries. That is something that can happen to anyone. I'm glad you reached out here on Connect. I know this is a lot of information to digest, but I was finding so much, and I wanted to share it with you.

Another possibility for help would be a service dog. I was personally involved with the Chicago chapter of Canine Companions for Independence and they match trained service dogs with patients who need them. You can find them at https://canine.org/.

This video of a podcast talks about a paralyzed patient walking again.
https://www.youtube.com/watch?v=OubpMu-2EcE&t=41s

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This link talks about clinical trials.
https://www.mayoclinic.org/departments-centers/spinal-cord-injury-rehabilitation-mayo-clinic/sections/clinical-trials/rsc-20480685

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This link has a video at the bottom with the first patient in the stem cell research for spinal cord injury. It's an amazing story.
https://newsnetwork.mayoclinic.org/discussion/science-saturday-mayo-clinic-research-is-a-step-toward-hope-for-spinal-cord-injuries/

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This "Sharing Mayo Clinic" story is also about the same patient with the spinal cord injury and recovery with stem cells.
https://sharing.mayoclinic.org/2020/01/13/new-hope-for-regaining-his-old-life-after-being-paralyzed/

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Suzan, do you have local resources to help your son? I know from my experience as a Mayo Clinic surgical patient, that Mayo is an amazing place of medical excellence. That is why I help patients here on Connect. Would your son consider inquiring about one of the clinical trials at Mayo for spinal cord injury?

@jenniferhunter Hi Jennifer,
Thank you so much for the valuable information you shared. I appreciate your thoughtfulness. My son had a laminectomy and a corpectomy at L1 in august of last year at Mayo Clinic in Minnesota. His surgeon was Dr. Bydon, one of the doctors with the stem cell study. Unfortunately my son is not qualified. They are looking for patients within the first year of injury.
My son does not qualify for the spinal stimulation studies either. I am very saddened with the fact that I can’t find any help for him. I am planning to reach out to the sponsor of the spinal stimulation trial study to find out if they are planning to expand their study group hopefully in the near future to include L1 injuries.
Once again thank you so much for your time and the literature you shared. This group is amazing. I wish I found you guys a little earlier.

@amandaburnett Hi Amanda,

Thank you so much for the articles related to the neurogenic bladder and bowel dysfunction you shared with me. We tried every technique but since my son is still in denial, 3 years after the accident, he can’t stick to a bowel schedule. He tries to do it at least once a day but he’s not patient about it. I was hoping to find some technique like bladder stimulation to ease his struggles.
Thank you again for all your effort. This idea to connect families dealing with similar issues is very valuable. I wish there was a national database registry to recruit patients with SCi.
Thanks again!!

@suzanbaltaji Thank you. I am glad your son had a great surgeon in Dr. Bydon. It doesn't hurt to write letters and ask about future studies and you may even be able to influence something like that if you figure out who to write to. It is possible that your son could benefit in the next few years if a trial produces good results and becomes a standard practice for treatment. You can also search for studies at the clinical trials website. https://www.clinicaltrials.gov/ Maybe you will find a similar study at another well respected institution, and that website could be updated any time. I looked at the Clinical Trials website for information about artificial disc trials to learn about them before my fusion surgery. I would not have been a candidate either, but I learned things that were risks that could cause device failure like the amount in mm of instability in the spine. 4 mm disqualified a person for an artificial disc study and I had 2 mm of instability, so I was not a great candidate for it anyway. If your son is interested in a service dog, there is often a waiting list of a few years. Canine Companions provides trained dogs for free to qualified candidates, but I don't know the specifics except a person needs to be able to handle a leash with their hands. I'm glad you find value in Connect. I've been on here for 3 years and I find meaning in helping people here.