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Thread: Recent TBI/SCI

  1. #1

    Recent TBI/SCI

    Hi all, I'm recently injured and wanted to share my story and have a few questions. I've also shared on the SCI SubReddit and met a few people there.

    Not long ago I was at a party on a lake and everyone was pencil-diving off a 30ft cliff into water. I've never done it from this height, but figured it looked easy and nobody else got hurt. I jumped and did not tuck my butt in, so it hit the water like concrete. My sacrum flexed up and sent a shock up through my spine, eventually neck and into my head. I guess my spine basically hit the underside of my head when I impacted the water at ~30mph. I retained motor function, didn't lose consciousness, and have memory of the whole event. I saw stars for about 10 seconds and felt immediate changes in my behavior, thought process, and emotion.

    As the days went on I developed all the classic symptoms of PCS and noticed many sensory issues throughout my body. I had weak legs, heavy arms, and sore joints from changes to my gait. I went to the ER about 1 week in. They did head to tailbone 1.5T MRI's and didn't find damage to the cord itself, stating I was in spinal shock. There was a small fracture within the sacrum from the trauma but I've been told it shouldn't have caused any bone fragments to damage nearby nerves. I personally don't believe the image quality was good enough to be conclusive. They discharged me without any diagnosis.

    I have absent bicep, plantar, genital reflexes and diminished ankle reflexes with a lot of anesthesia/dysfunction in the genital area. At first I had diminished bladder and bowel sensation but it has progressed and my bowel is constipated upstream now. They said my symptoms present like cauda equina, but the static MRI's don't look like a classic case. Unsure how much might be peripheral nerve damage from the sacrum out through the pelvis.

    I'm about 2 months out and my symptoms are:
    - Diagnosed with concussion/mild traumatic brain injury. Working through therapy for this one, been told it should recovery with time.
    - Weakness from shoulders to fingers with some fine motor control problems. While it's changed from before the injury, its good enough for me to complete all my daily tasks.
    - Weakness from hips to toes with some fine motor control problems. While it's changed from before the injury, its good enough for me to walk around and most people may not be able to tell.
    - Core muscle strength is changed, my belly seems to be more distended. Good posture takes more effort.
    - Low back pain around the sacrum to L5 area. Substantial loss of sensation in the genitals and sexual dysfunction.
    - Poor sensation of bladder, bowel constipation. I've been able to help the constipation with a modified fiber diet and occasional milk of magnesia.
    - Sensation changes throughout my body from head to toes, temperature is the most pronounced but pain and touch are also effected. Skin sweating and discoloration also occur. Seems like I have a lack of feedback with regards to many functions.
    - Breathing feels altered but can't put my finger on it, doesn't seem to negatively impact day to day. Blood pressure and heart rate seem a bit more variable than before the injury.
    - Some neck pain and cracking throughout my back, especially in the morning.
    - All of my joints ache especially in the morning, I'm guessing from the changes to the muscle function.

    Despite the changes, I'm able to get myself around relatively normally and drive as well. I try to go on walks for 45 mins a day and do minor weight lifting every other day. I plan to get in for a PT exam/workup soon. I've not been assigned an ASIA grade, or given a diagnosis by any neurologist. They consider the injury minor and claim I should recovery, which I disagree with due to the severity of the issues. I've pushed to get better 3T MRI's and be more conclusive on where the damage is but they are not interested.

    My questions are:
    - Has anyone ever experienced or met someone with a "minor" SCI like this?
    - What type of improvement can be expected with an injury like this? I've heard PT and exercise is key to recovery.
    - I feel stuck in limbo without any clear diagnosis, and symptoms linger or get worse. Should I push my neuro to get those new scans or what would be a good next step?
    - Have you ever gotten an MRN (magnetic resonance neurography)? I considered it for the pelvis to see if sacral nerves were damaged causing the genital/bowel/bladder issues.


    Thanks for any input and letting me share!

  2. #2
    Where do you live?

  3. #3

  4. #4
    Quote Originally Posted by Vector82 View Post
    In the USA, Midwest
    A more specific location may help us to suggest a spinal cord injury rehabilitation center where you could get a thorough work up, a treatment plan and answers to your questions. That said here are a couple resources you may want to check into and find a location near you. These two links will take you to lists of spinal cord injury providers and rehabilitation centers in the United States that hold one or both accreditations.

    Model Systems Knowledge Translation Center (MSKTC) https://msktc.org/sci/model-system-centers

    Commission on Accreditation of Rehabilitation Facilities (CARF) http://www.carf.org/advancedProviderSearch.aspx

  5. #5
    Oh I forgot to mention it in the original post. I'm currently seeing someone at the Shirley Ryan Ability Lab in downtown Chicago for the TBI. They will be referring me to an sci doc there as well. My neuro is through Northwestern.

  6. #6
    So they didn't see a fracture but there is a contusion(bruise), swelling (edema) other issues they expect to rsolve on their own and surgery is not indicated?Northwestern and Chicago certainly has experience in TBI/SCI.
    CWO
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  7. #7
    Quote Originally Posted by SCI-Nurse View Post
    So they didn't see a fracture but there is a contusion(bruise), swelling (edema) other issues they expect to rsolve on their own and surgery is not indicated?Northwestern and Chicago certainly has experience in TBI/SCI.
    CWO
    From the 1.5T MRI scans they did not identify any fractures. I've also met with a neurosurgeon who did not see anything that would require surgery. They also did not note any contusion, swelling, or signal intensity change which is strange, due to all the neurological symptoms I'm having. There are some slightly bulging discs and disc degeneration which the docs believe are pre-existing and may contribute to any damage from the trauma. T8-T9 has the largest central disc protrusion causing mild flattening of the thecal sac and mild flattening of the cord, however they don't state that any damage was noticed at that location. Curious as to whether some damage did occur there from the trauma.

    Are 1.5T images usually conclusive or are higher quality images like a 3T needed in certain cases? To me (of course I'm not trained) the images appear grainy and I figure we could see damage better with higher quality ones. Based on the information we have today, my neuro states I'll make a full recovery but I haven't been confident in that prognosis.
    Last edited by Vector82; 11-14-2018 at 01:58 PM.

  8. #8
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    I would not be confident either in your shoes. Almost no one makes full recoveries from serious injuries. When we appear to symptoms come back to cause trouble when we get older, or make subsequent injuries more serious.

    I think better imaging will help only in future (or present) insurance matters and that is an unpredictable rat's nest. It is unlikely your body will return to to it's former soundness, but, well, things happen to most of us and they do tend to accumulate as we age.

    You may wish to consult with a good acupuncturist, a very qualified nutritionist, and a chiropractor. Any chiropractor should be one using the activator technique or another very low force technique. In cases like yours where allopathic medicine can do little for you other than run tests, sometimes alternative treatments can give one a real boost.

    I'm very glad you are being referred to an SCI specialist. If it is a good one they will understand your situation much better. I suspect your exercise program is just right for your situation. Eat lots of protein.

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