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18 Year Old Son C2 Vent Dependent

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  • 18 Year Old Son C2 Vent Dependent

    We are new to posting on this site. My son was injured March 2006 in a motocross accident. We are now home after spending 3 months at Shepherd and 3 months at Kennedy Krieger Institute. He is now a Asia C incomplete with a lot of sensation and small movement in just about every muscle group. They think he should be able to regain his arms again but, his tone and spasicity they believe is keeping him from progressing further. We are looking into the baclofen pump at the doctors request. Can anyone give us first hand info on how they are doing with the pump and whether it is really as good as they say? We are afraid to put him through another surgery and implant something else into his body.

  • #2
    Sorry to hear about your son's accident and welcome to Care Cure. I'm a C2/3 vent dependent quad 22 years post injury. Personally, I don't use the pump, just oral meds. Unfortunately, I've heard of several problems with the Baclofen pump, and I want to keep some muscle strength and not have an implant. However, there are people that have done very well with these implants as well.

    Is your son continuing to do any rehab? If so, what and at what facility? He's at a time where further gain is still possible and should still be working toward that. More knowledgeable people than I will be posting shortly, but these are a few things to start with.
    C2/3 quad since February 20, 1985.

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    • #3
      A baclofen pump is more likely to help with leg spasticity than arm spasticity because of where the catheter is placed. It cannot be placed close to the cervical area, so you get better drug concentration lower in the cord.

      What other spasticity meds have been tried? Combinations? Has Botox been considered? Do you have a good physiatrist to work with locally? If not, I would want to go back to Shephard to get their input before making a decision about this surgery.

      (KLD)
      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.

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      • #4
        Originally posted by SCI-Nurse
        A baclofen pump is more likely to help with leg spasticity than arm spasticity because of where the catheter is placed. It cannot be placed close to the cervical area, so you get better drug concentration lower in the cord.

        What other spasticity meds have been tried? Combinations? Has Botox been considered? Do you have a good physiatrist to work with locally? If not, I would want to go back to Shephard to get their input before making a decision about this surgery.

        (KLD)

        His physiatrist in Baltimore is the one that has suggested we try the pump. He is taking Dantrolene, Zanaflex and Sinemet. He has had several doses of Botox. All of which has not really helped at all. The doctor did say the pump would mainly decrease leg spasticity but, may help with arms overall to a lesser degree. He receives PT and OT 5 days a week but, he just can't break through the tone. Is there something else we should try before the pump?

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        • #5
          Motorcycle too!

          So sorry, so very sorry. I too understand what jy and what Horror motorcycles can bring. With Fonsaca also injured the same way... and I hear of so many others. They say they are building the tracks more and more impossible... to ride. and any little bobble puts you into a bad and very dangerous spot. I know thats another issue, but having been around racing my whole life... I want you to know... i feel you. I am T-12 Para complete in Horror Pain. One thing I you may want to consider... is contacting Craig Center... and find out what you can do now... within the first ciouple years, as I have told???? that might help prevnt pain entering into the existing condition. If you can do something, take something or anything they know of that you can do NOW tha might help reduce the chance pf pain setting in. I was litealy pain free for 6 months. At that time I was very sad to be in a chair. Now, I dont spend 1 second thinking about being paralized or in a chair... I only think about my Horrible Horrible Pain. I was told, If I had taken Steroids, and other things... within a couple of years even???? I may have been able to reduce that chances of pain setting in. I was also told if I would have taken pain meds early on, maybe it would have not settle in??? I have no idea... you hear lots pof garbage online. It is a good resouce but be careful it s a breding ground for bad information also. I only say what I did because I look back and wonder if I could have done something. I wish the best on your new journey. Its a tough road... but it is a road. It has many bumps... but the smooth parts seem all the more smooth! Corney, yea... You have me to ask anything. I will tell you what I have learned in 4 years. Thanks, Mike
          Mike (Florida)

          Cant we get 1 do over?

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          • #6
            Originally posted by mike bauer
            With Fonsaca also injured the same way...
            Sorry to jack this thread, but is Ernesto on here? I was at rehab with him at Craig hospital but I haven't been able to get a hold of him since he left.
            "All of us are all too stuck strapped to a chair watching our lives blow up..."

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            • #7
              I recently spoke with Dr. John McDonald (Kennedy-Kreiger) and he strongly suggested I avoid Baclofen.
              Is your son still on a vent? I was, I'm a C2-C3. but now use phrenic nerve stimulators. Let me know if you want more info.

              Thanks.

              Chuck

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              • #8
                Originally posted by ChuckFoss
                I recently spoke with Dr. John McDonald (Kennedy-Kreiger) and he strongly suggested I avoid Baclofen.
                Is your son still on a vent? I was, I'm a C2-C3. but now use phrenic nerve stimulators. Let me know if you want more info.

                Thanks.
                Hi Chuck~ Dr.McDonald suggests you avoid ORAL baclofen but if tone is an issue, the pump is the most effective way to receive the drug.

                JMT, I am guessing your sons doctor is Cristina Sadowsky. She along with Dr. McDonald suggest the pump over oral meds of the spastsiticity can't be managed. She also uses botox prior to suggesting the pump.

                There are a number of members who use the pump, you might get a better response in Care forum. Let me know if you want this thread moved there.
                Every day I wake up is a good one

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                • #9
                  You might see if he is a candidate for the neurorcovery network program for walking. I know it has proven very helpful with ASIA D and some ASIA C. These are the facilities you can choose from. An application is needed. Did they mention it to him when he was at Shepherd???You can google it and read more. It is also amazing because while in the program not Baclofen allowed and pretty much the spasticity decreases dramtically, and the gait and ambulation improvement is phenomenal.

                  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.

                  Comment


                  • #10
                    Originally posted by cheesecake
                    Hi Chuck~ Dr.McDonald suggests you avoid ORAL baclofen but if tone is an issue, the pump is the most effective way to receive the drug.

                    JMT, I am guessing your sons doctor is Cristina Sadowsky. She along with Dr. McDonald suggest the pump over oral meds of the spastsiticity can't be managed. She also uses botox prior to suggesting the pump.

                    There are a number of members who use the pump, you might get a better response in Care forum. Let me know if you want this thread moved there.
                    Cheesecake; You are right about Dr. McDonald and oral baclofen. They immediately weaned Ben off when we arrived their last summer. Now tone and spasticity is preventing him from being able to see what kind of real movement he may have. He has pretty much all muscle firings everywhere. His doctor is Ewa Brandys, another one of their physiatrists. He tried the botox and he went backwards with it, so no more botox. We are scheduled for surgery june 4 but, if the care forum is a better place for this, yes please move it for me. Thank you

                    Comment


                    • #11
                      [quote=ChuckFoss]I recently spoke with Dr. John McDonald (Kennedy-Kreiger) and he strongly suggested I avoid Baclofen.
                      Is your son still on a vent? I was, I'm a C2-C3. but now use phrenic nerve stimulators. Let me know if you want more info.


                      Chuck,

                      Ben was at KKI last summer and you look very familiar. Ben had the diaphragmatic pacer implanted last December at the Cleveland Clinic. Is the phrenic nerve stimulator the same and how are you doing with it.

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                      • #12
                        Im missing something here. The doc took him off oral baclofen, now major tone in muscles, and they dont go back on orals, but suggest a pump???What the heck is the deal here??Why not go back to the oral baclofen, and see if his tone will calm down? Please set me straight with this...John

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                        • #13
                          [quote=SCI-Nurse]You might see if he is a candidate for the neurorcovery network program for walking. I know it has proven very helpful with ASIA D and some ASIA C. These are the facilities you can choose from. An application is needed. Did they mention it to him when he was at Shepherd???
                          • <LI class="">Frazier Rehab Institute, Louisville, Kentucky

                            Funny, we just made a trip to Frazier to check out the neurorecovery program there. Beautiful facility, quite up to date. After the pump on June 4th, we are heading back to Kennedy for inpatient rehab. We want to mainly focus on arms, since they keep saying he should regain function, if we can break through the tone with a little help from the pump, then, hopefully a little later to Louisville. The locomotion and aqua-therapy looks really,really good. They also believe that he may be able to at least walk in the pool and maybe further later. Who knows -- Thanks

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                          • #14
                            Originally posted by graybeard
                            Im missing something here. The doc took him off oral baclofen, now major tone in muscles, and they dont go back on orals, but suggest a pump???What the heck is the deal here??Why not go back to the oral baclofen, and see if his tone will calm down? Please set me straight with this...John
                            I am just learning all this stuff but, oral baclofen has to go through the bloodstream and organs first and by the time it reached the spinal cord, where it is needed, not enough is left. The take orally enough to help, you would probably be unconscious. The pump delivers about 1/500th of the oral dose and it drips directly into the spinal fluid. Ben is on dantrolene, sinemet and zanaflex plus, 5x a week therapy and he can not progress because of the tone. This from what we are told, is the next step, if you'll forgive the expression.

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                            • #15
                              Originally posted by jmt823
                              Ben was at KKI last summer and you look very familiar. Ben had the diaphragmatic pacer implanted last December at the Cleveland Clinic. Is the phrenic nerve stimulator the same and how are you doing with it.
                              I hope I am not being too personal here. I apologize if I am. How is your son doing with the diaphragm pacer? Is he able to be off the vent 24/7?

                              I am having an EMG done soon to see if I qualify for the clinic trial that recently started in Vancouver. I realize I am highjacking this thread very briefly (sorry). I just don't get the chance to hear from many people, or their families, who have had the procedure done.

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