Radiation-induced spinal injury — Reeve Connect
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Radiation-induced spinal injury

RDW91RDW91 Member Posts: 2
First Comment
Hello,

In 2017, I was diagnosed with Radiation Fibrosis Syndrome, aka late effects from radiation treatment for cancer. The pelvic radiation I received in 1997 damaged the nerves in my cauda equina and around autumn 2014, I began experiencing weakness in my legs which has progressed to the point where I'm now in a wheelchair. As my doctor put it, what I essentially have is a "gradual spinal injury."

I'm curious if there is any known research being conducted at the moment for radiation induced spinal issues. I would be willing to participate in medical studies if those options are out there.

Thank you for your time.

Comments

  • AskNurseLindaAskNurseLinda Moderator, Information Specialist Posts: 143 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Hi, RDW91, I find it very positive that you are interested in helping others with clinical research. It is not that uncommon for radiation in the area of the spine to lead to issues as you have. The best place to look for clinical research studies is at the site: clinicaltrials.gov. You can search for spinal radiation paralysis or damage. The information for participating in studies is in the individual study summary but even if you can't or do not wish to participate in a particular study, the study design, inclusion information and aims will be in the summary. You can use this information to your advantage with your own healthcare professionals. Also, results of the studies are published when the study is completed. You can get a tremendous amount of information from these studies that can help you in your quest.
    Also, I would like to mention that the nerves in the cauda equina are peripheral nerves, not central nervous system nerves. Peripheral nerves can be transferred and grafted to increase function. It takes a highly educated specialist neurosurgeon or reconstruction surgeon (usually found in Plastic and Reconstructive Surgery Departments) to undertake such surgeries. You would most likely find one in an academic medical center. Very few do this type of extreme specialty work so you will have to be focused to find one so highly educated close to you for your needs. Justin Brown, MD at Harvard, Ida Fox, MD and Thomas Tung, MD at Washington University in St. Louis and several others in California are just a few. I don't know where you are located but there are others in Texas and Washington State as well as around the country. This type of surgery might help release your scar tissue to improve your function. 
    There are also implants that might increase your function. Medtronic has a device for bladder function if that is an issue.
    Anyway, because you have a peripheral nerve injury, you have options. Just be careful who you chose and weigh your options cautiously. I hope you can gain some recovery. From your self reported history, I think you will have opportunity. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • RDW91RDW91 Member Posts: 2
    First Comment
    Nurse Linda,

    Thank you very much for your detailed reply. It’s a refreshing change from the many times I’ve been essentially told “I can’t help you but good luck!”  :)
    I live in the western NC area so if you know of any similarly qualified doctors in the region, please let me know. Coincidentally, I share an alma mater with Dr. Brown. I may reach out to his office to see if I could at least do a virtual consult appointment. It seems that most peripheral nerve repairs have been performed in hands and arms while my condition affects only lower extremities, but I would at least be interested in learning more.
    My MRI showed multiple lesions affecting various nerves in the lumbosacral area so I’ve been told before that surgery isn’t a viable option, but I realize technology and skills are constantly evolving, so maybe that won’t always be the case.

    Thanks again for your help. I truly appreciate it.
  • AskNurseLindaAskNurseLinda Moderator, Information Specialist Posts: 143 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Hi, RDW91. It is more of a challenge to find someone who does cauda equina nerves but they are out there. Dr. Brown is one that I know who has extensive knowledge in this area of the body. I hope it all works. Travel is not a good idea right now but perhaps soon when the COVID vaccine is in full swing? Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

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