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  • T4 ASIA A from EU

    Hi, I'm an ex EU pro cyclist, I have had a serious bike crash resulting T4 complete injured (ASIA A). I'd like to participate to your forum sharing my experience with hospital, rehab center; my problems and current alternative therapies.

    After the crash (all the ribs, both clavicles, sternum and vertebrae from C7 to D8 fractured plus perforation of both lungs) , I was hospitalized for 10 months (resuscitation department, intensive neurosurgical therapy then infectious disease department). During this time I contracted countless infections including Acineto bacter, Klebsiella, Candida, Pseudomonas... This delayied the stabilization of my spine.

    The worst period from the clinical point of view has passed and I moved into Santa Lucia spinal center in Italy (Rome), not a good choice, poor physioterapy, complete absence of occupational therapy and doctors completely devoid of humanity.

    Now I'm at home, I do physiotherapy 3 x week and do a lot of exercise, the hardest problems to solve are the bowel program and the neuropathic pain (concentrated in the abdomen and anal area).


    My current pharmacological therapy:

    Gabapentin 300mg 3 x day
    Oxybuthinin 2,5mg 3 x day
    Sodium valproate 300mg (slow released form) 2 x day
    Gastrodin 300mg
    Apixaban 2,5mg 2 x day
    Ursodeoxycolic acid 450mg
    Gonadorelin intranasal (short acting GnRH) 3 x week
    Lorazepam 2,5mg pre-bed

    Work in progress...


    Sorry for the bad english.
    T4 AIS A since 07/05/2017

    "We lie the best when we lie to ourselves."

  • #2
    Welcome to the CareCure community. Thank your for sharing your medical history thus far. Let us know what further experiences you’d like to share or questions you have.

    pbr
    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.

    Comment


    • #3
      Hello El Bandido. From the state of Michigan in the USA. Hang around and absorb some of the stuff on here. You might even get to like us. Sorry about your injury. Sounds like it was a bad one. Are you a member of one of the riding groups like Nike or, Red Bull? Your rehab sounded intense. The bowel program is a regular bitch. l am a para at T 11. Results of a motorcycle accident. Been 10 years now. Biggest concern are those secondary infections caused from simple little things that happen. Best wishes to you. Post any time. I'm sure you have many interesting things you can tell us about. ......Bigtop1
      I refuse to tip toe through life, only to arrive safely at death.

      Comment


      • #4
        Thanks for the welcome, I'm not a member of those riding groups, I have only one thing in my mind, to maximize my recovery and my autonomies. I'm physically and genetically prepared for endurance sports so I don't exclude one of it in my future, but it's not time yet. I hope I'll have only good and interesting things to tell you.
        T4 AIS A since 07/05/2017

        "We lie the best when we lie to ourselves."

        Comment


        • #5
          Quick update on therapy...

          Gabapentin 300mg 3 x day
          Oxybuthinin 2,5mg 3 x day
          Sodium valproate 300mg (slow released form) 2 x day
          Apixaban 2,5mg 2 x day
          Ursodeoxycolic acid 225mg slow released form EOD
          Leuprolide acetate (long acting GnRH) 1 x month
          TRT w/ oral testosterone undecanoate or transdermal testosterone base
          Somatropin 1IU pre-bed
          PEA 600mg ultramicronized form pre-bed
          Lorazepam 2,5mg pre-bed

          It's a bit experimental, however the skin is mine.


          Gastrodin 300-600mg per day (
          https://www.nature.com/articles/srep37251) has simply no noticeable effect on me.
          Ursodeoxycolic acid definetly helps with constipation and bowel program, probably it does something with fat absorption, softening the stools.

          I give a try to the only two substances, available in my country and self-administrable, that seem to have little scientific evidences about recovery of the injury; leuprolide acetate and somatropin.
          T4 AIS A since 07/05/2017

          "We lie the best when we lie to ourselves."

          Comment


          • #6
            Therapy update, a bit experimental, however the skin is mine...

            Gabapentin 400mg 3 x day
            Oxybuthinin 2,5mg 3 x day
            Sodium valproate 300mg (slow released form) 2 x day
            Apixaban 2,5mg 2 x day
            Ursodeoxycolic acid 225mg (slow released form) EOD
            Leuprolide acetate 3,75mg (long acting GnRH analogue) 1 x month
            Testosterone replacement dose with transdermal testosterone base
            PEA ultramicronized 600mg pre-bed
            Lorazepam 2,5mg pre-bed
            Somatropin 1,5IU pre-bed


            I cut Gastrodin, it has no effect on me at 300-600mg per day.

            Ursodeoxycolic acid definetly helps me with bowel regimen, probably it does something reducing cholesterol absorption, softening the stools.

            Starting an home-made trial with leuprolide, the only drug with some scientific evidence in literature that i can find in my country and self-administer, i also started a TRT protocol with oral testosterone undecanoate, but this form of testosterone gives me an increase in neuropathic pain and in spasms ubearable, so I switched to transdermal route.

            I hope not to break any rules by posting this BBforum-like log.
            Last edited by El Bandido; 01-04-2019, 06:35 AM.
            T4 AIS A since 07/05/2017

            "We lie the best when we lie to ourselves."

            Comment


            • #7
              Greetings.

              I was a cat 3 masters cyclist (~40 races/year, mostly road/crit, but some mtb and cx) when I was injured at 47 years.
              I'm glad to help however I can.

              My drug regimen is pretty simple:

              Lyrica for nerve pain, 300 mg 2x/day - need to ween off this as it really doesn't help much after a couple weeks but stopping is crazy pain.
              Baclofen for spasticity 4x/day
              Docusate for stool softener

              I used to take Oxybutynin but now do botox.

              I take the following as needed:
              Valium or clonopin for when nerve pain gets too much (about 1/week)
              Tramadol for neuromuscular pain (about 1/week)

              My biggest issue is pain. I have substantial intramuscular pain from the implants and at the injury site and I have nerve pain over my entire paralyzed body with concentrations in the right foot and anus area (so fun!).

              I'm interested in any of the drugs your taking that are supposed to help with recovery. I've tried 4AP but it makes my nerve pain much worse. I'd like to take 4AP-3-MeOH, but it's not available.
              T3 complete since Sept 2015.

              Comment


              • #8
                Hi Mize, it seems that we have the same problems and the same approach.

                I've tried Lyrica but it gave me a strange lysergic side effect, during the night I pratically did a long trip, fun experience but I spent sleepless nights.

                Clonopin, I assume, is clonazepam (Rivotril in EU)? strong benzodiazepin, never used, but very diffuse in the rehab clinic where I've been.


                The drugs I started to use that are supposed to help recovery are simply:

                Leuprolide acetate (Enantone 3,75mg Takeda) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705795/ - https://www.researchgate.net/publica...al_Cord_Injury - https://www.ics.org/2018/abstract/428

                Somatropin rhGH (Genotropin Pfizer) https://www.ncbi.nlm.nih.gov/pubmed/29373545 - https://www.ncbi.nlm.nih.gov/m/pubmed/27447486/


                Never tried both Ampyra or 4-AP-3MeOH, but from what I understand they are compounds that stimulate the activity of damaged axons, this probably could be a great thing for an incomplete, for us the activity of the axons under the injury results in neuropathic pain, paresthesia, spasms and spasticity, so I'm not so convinced to try them.
                T4 AIS A since 07/05/2017

                "We lie the best when we lie to ourselves."

                Comment


                • #9
                  Hi Mize, it seems that we have the same problems and the same approach.


                  I've tried Lyrica but it gave me a strange lysergic side effect, during the night I pratically did a long trip, fun experience but I spent sleepless nights.


                  Clonopin, I assume, is clonazepam (Rivotril in EU)? strong benzodiazepin, never used, but very diffuse in the rehab clinic where I've been.




                  The drugs I started to use that are supposed to help recovery are simply:


                  Leuprolide acetate (Enantone 3,75mg Takeda) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705795/ - https://www.researchgate.net/publica...al_Cord_Injury - https://www.ics.org/2018/abstract/428


                  Somatropin rhGH (Genotropin Pfizer) https://www.ncbi.nlm.nih.gov/pubmed/29373545 - https://www.ncbi.nlm.nih.gov/m/pubmed/27447486/




                  Never tried both Ampyra or 4-AP-3MeOH, but from what I understand they are compounds that stimulate the activity of damaged axons, this probably could be a great thing for an incomplete, for us the activity of the axons under the injury results in neuropathic pain, paresthesia, spasms and spasticity, so I'm not so convinced to try them.
                  T4 AIS A since 07/05/2017

                  "We lie the best when we lie to ourselves."

                  Comment


                  • #10
                    Hi Mize, it seems that we have the same problems and the same approach.


                    I've tried Lyrica but it gave me a strange lysergic side effect, during the night I pratically did a long trip, fun experience but I spent sleepless nights.


                    Clonopin, I assume, is clonazepam (Rivotril in EU)? strong benzodiazepin, never used, but very diffuse in the rehab clinic where I've been.




                    The drugs I started to use that are supposed to help recovery are simply:


                    Leuprolide acetate (Enantone 3,75mg Takeda) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705795/ - https://www.researchgate.net/publica...al_Cord_Injury - https://www.ics.org/2018/abstract/428


                    Somatropin rhGH (Genotropin Pfizer) https://www.ncbi.nlm.nih.gov/pubmed/29373545 - https://www.ncbi.nlm.nih.gov/m/pubmed/27447486/




                    Never tried both Ampyra or 4-AP-3MeOH, but from what I understand they are compounds that stimulate the activity of damaged axons, this probably could be a great thing for an incomplete, for us the activity of the axons under the injury results in neuropathic pain, paresthesia, spasms and spasticity, so I'm not so convinced to try them.
                    T4 AIS A since 07/05/2017

                    "We lie the best when we lie to ourselves."

                    Comment


                    • #11
                      Hi Mize, it seems that we have the same problems and the same approach.


                      I've tried Lyrica but it gave me a strange lysergic side effect, during the night I pratically did a long trip, fun experience but I spent sleepless nights.


                      Clonopin, I assume, is clonazepam (Rivotril in EU)? strong benzodiazepin, never used, but very diffuse in the rehab clinic where I've been.




                      The drugs I started to use that are supposed to help recovery are simply:


                      Leuprolide acetate (Enantone 3,75mg Takeda) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705795/ - https://www.researchgate.net/publica...al_Cord_Injury - https://www.ics.org/2018/abstract/428


                      Somatropin rhGH (Genotropin Pfizer) https://www.ncbi.nlm.nih.gov/pubmed/29373545 - https://www.ncbi.nlm.nih.gov/m/pubmed/27447486/




                      Never tried both Ampyra or 4-AP-3MeOH, but from what I understand they are compounds that stimulate the activity of damaged axons, this probably could be a great thing for an incomplete, for us the activity of the axons under the injury results in neuropathic pain, paresthesia, spasms and spasticity, so I'm not so convinced to try them.
                      T4 AIS A since 07/05/2017

                      "We lie the best when we lie to ourselves."

                      Comment


                      • #12
                        Hi Mize, it seems that we have the same problems and the same approach.
                        I've tried Lyrica but it gave me a strange lysergic side effect, during the night I pratically did a long trip, fun experience but I spent sleepless nights.
                        Clonopin, I assume, is clonazepam (Rivotril in EU)? strong benzodiazepin, never used, but very diffuse in the rehab clinic where I've been.




                        The drugs I started to use that are supposed to help recovery are simply:


                        Leuprolide acetate (Enantone 3,75mg Takeda) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705795/ - https://www.researchgate.net/publica...al_Cord_Injury - https://www.ics.org/2018/abstract/428


                        Somatropin rhGH (Genotropin Pfizer) https://www.ncbi.nlm.nih.gov/pubmed/29373545 - https://www.ncbi.nlm.nih.gov/m/pubmed/27447486/




                        Never tried both Ampyra or 4-AP-3MeOH, but from what I understand they are compounds that stimulate the activity of damaged axons, this probably could be a great thing for an incomplete, for us the activity of the axons under the injury results in neuropathic pain, paresthesia, spasms and spasticity, so I'm not so convinced to try them.
                        T4 AIS A since 07/05/2017

                        "We lie the best when we lie to ourselves."

                        Comment


                        • #13
                          Hi Mize, it seems that we have the same problems and the same approach.


                          I've tried Lyrica but it gave me a strange lysergic side effect, during the night I pratically did a long trip, fun experience but I spent sleepless nights.


                          Clonopin, I assume, is clonazepam (Rivotril in EU)? strong benzodiazepin, never used, but very diffuse in the rehab clinic where I've been.




                          The drugs I started to use that are supposed to help recovery are simply:


                          Leuprolide acetate (Enantone 3,75mg Takeda) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705795/ - https://www.researchgate.net/publica...al_Cord_Injury - https://www.ics.org/2018/abstract/428


                          Somatropin rhGH (Genotropin Pfizer) https://www.ncbi.nlm.nih.gov/pubmed/29373545 - https://www.ncbi.nlm.nih.gov/m/pubmed/27447486/




                          Never tried both Ampyra or 4-AP-3MeOH, but from what I understand they are compounds that stimulate the activity of damaged axons, this probably could be a great thing for an incomplete, for us the activity of the axons under the injury results in neuropathic pain, paresthesia, spasms and spasticity, so I'm not so convinced to try them.
                          T4 AIS A since 07/05/2017

                          "We lie the best when we lie to ourselves."

                          Comment


                          • #14
                            I've ended my trial with Leuprolide acetate and somatropin due to a lack of results. I tried only 6 months but I feel nothing. I've also interrupted PEA supplementation and switched from gabapentin to pregabalin with no improvement in neuropathic pain. So, my current therapy:

                            Pregabalin 75mg 3 x day
                            Valproic acid 500mg 2 x day
                            Oxybuthinin occasional use only
                            Apixaban 2,5mg 2 x day
                            Ursodeoxicholic acid (slow release form) 225mg EOD
                            Lorazepam 2,5mg pre-bed

                            I don't know if it depends on these changes but my bowel regimen is worsening, I'm more constipated.
                            T4 AIS A since 07/05/2017

                            "We lie the best when we lie to ourselves."

                            Comment


                            • #15
                              Ursodeoxicholic acid or Ursodiol
                              Common Side Effects
                              • Diarrhea or constipation.
                              • Upset stomach, indigestion, or vomiting.
                              • Dizziness.
                              • Cough or sore throat.
                              • Runny nose.
                              • Back pain.
                              • Muscle or joint pain.
                              • Hair loss.


                              Are you taking medication for gallstones?
                              oxybutynin can result in constipation also

                              pbr
                              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.

                              Comment

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