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

RDW91
RDW91 Member Posts: 3
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

  • AskNurseLinda
    AskNurseLinda Moderator, Information Specialist Posts: 158 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!

  • RDW91
    RDW91 Member Posts: 3
    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.
  • AskNurseLinda
    AskNurseLinda Moderator, Information Specialist Posts: 158 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!

  • RDW91
    RDW91 Member Posts: 3
    First Comment
    Hi Nurse Linda,
    Are you aware of any current research that’s specifically targeted to spinal cord damage related to radiation treatment? I’ve not had any luck finding such an animal.
    Thank you.
  • AskNurseLinda
    AskNurseLinda Moderator, Information Specialist Posts: 158 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Hi, RDW91, Such an unfortunate event to have an issue, get treated and then complications from the treatment, like you are describing with radiation and the spine. But there is information out there. These might apply to your situation or at least bring up a topic to discuss with your healthcare provider as options. 
    Here are some links:

    Treatment of pain with systemic lidocaine injections: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5859894/
    Principles of treatment in nontraumatic sci: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5667427/
    Treatment of radiation induced SCI with blood thinners: https://pubmed.ncbi.nlm.nih.gov/7969953/

    Both pubmed and the ncbi are good resources for spinal cord injury research.

    This is a completed study about spinal cord radiation from the website clinicaltrials.gov. It can be used as a resource of ideas. Be sure to check the reference list as other similar studies will be provided there. https://www.clinicaltrials.gov/ct2/show/NCT03070431?term=spinal+cord+injury&cond=radiation&draw=2&rank=3

    Treatment for SCI from any cause is tailored to the individual but mostly focuses around movement. If you have an injury from radiation, there probably is not going to be a specific treatment that matches with the cause. Rehabiliation of SCI follows the same treatment plans. There are specifics to the cause like spine stabilization or treatment of a medical condition, but the overall rehabiliation program will be mostly the same.

    I think these ideas and links will get you started. Be sure to look at the reference section of any research that you find as there will be more articles on your topic. Sometimes, that is the best route to find information.

    Good luck on your journey. In a short time, you will be telling us! 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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