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  • #16
    kari, that's a great idea--we didn't even consider a gym, we were literally thinking of purchasing or renting specific equipment for him. he's getting discharged in the next week or so...or at least that's what they're saying, but no firm date yet. right now, he works out before and after his therapy sessions, so he doesn't want to slow down. the idea of being outpatient and having less "gym time" concerns him....so we're trying to find ways to help supplement his therapy. your recommendation might sound like the most flexible and possibly cost-effective method. i will pass this along to him.

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    • #17
      Aquatherapy/pool!!!!

      Regular aquatherapy has kept me standing and walking short distances despite having a high-level incomplete SCI. There is no safer, more effective way to maximize recovery, gain strength in walking and standing, regain balance and core muscles, improve circulation, build muscle mass and regain every iota of function possible. I'd suggest a few outpatient appointments with a PT experienced with SCI rehab using aquatherapy, then as your brother improves and gets stronger he can exercise independently. I was injured in an era when PT was viewed as rather useless for SCI--a very good therapist later told me that had if I had received aquatherapy-based physical therapy shortly after my injury my recovery would have been significantly greater.

      The local rehab center uses aquatherapy for SCI rehab, stroke, traumatic brain injury and a host of other medical problems. It can make an incredible difference. I pay 4 bucks an hour to use the local aquatherapy pool. KLD is exactly correct in saying that a pool/aquatherapy facility is excellent for walking.

      Based on my experience, I very, very highly recommend that you find a nearby aquatherapy pool and get your brother started as soon as you can. It can make an incredible difference. Good luck!

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      • #18
        Thank you avictoria! I will reinforce what I told my brother about aquatherapy. As i mentioned in earlier posts, he will be released from inpatient rehab soon--no firm date, but we're being told within a week and that was a few days ago. it's exactly a month since his injury and he has done any type of aquatherapy, though when i mentioned it to him based on KLD's advice, he seemed really interested. So we will look for an outpatient facility or program that supports aquatherapy. Thank you again for your insight!

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        • #19
          Also curious if anyone has tried "locomotor" rehabilitation program for SCI? There's a non-profit out here in LA called NextStep that was created by an individual who had suffered a spinal cord injury. Has anyone tried it?

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          • #20
            Originally posted by SCI-Nurse View Post
            Of course there are also the options of a post-acute rehab intensive exercise program such as Project Walk, but costs related to relocation, in addition to the costs of the program (which is not covered by any insurances that I know of) can be prohibitive.

            (KLD)
            That is the type of program I was referring to above. Most of these types of programs post here (bordering on advertising) in the Exercise & Recovery forum.

            (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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            • #21
              KLD, I see....i will have to check out the exercise and recovery forum for more information. i checked out Project Walk from your earlier post, but it's in Carslbad which is nearly 2 hours away.

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              • #22
                Make sure when you check out Project Walk you ask to talk to previous patients who went through their program to get a first hand perspective.

                good luck

                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.

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                • #23
                  my brother mentioned that he has a constant feeling of pins and needles or neuropathy that runs all over his body every minute of every day. is that a typical symptom of SCI? Is it reversible? What can we do to help it? he said that waking up in the morning feels like a mack truck hit him.

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                  • #24
                    Is he on medication for neuropathic pain? Has he discussed with his physiatrist? The medications most likely to help with this (although not make it go away completely) are Tegretol, Neurontin, and Lyrica. Sometimes a tricyclic antidepressant like Elavil will also help.

                    I hope he is not smoking. Lots of evidence that it makes neuropathic pain worse.

                    (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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                    • #25
                      Hi KDL, he's not smoking...never been a smoker. he is on meds...he's on neurontin...and possibly one more. but definitely neurontin, though not sure if that's more for muscle spasms or the neuropathy. i don't believe he has a physiatrist. i'll have to ask. will it ever go away?

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                      • #26
                        Neuropathic pain rarely goes away on its own, and often gets worse with aging. How much Neurontin is he taking? It is not a very good antispasticity drug for those with SCI.

                        (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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                        • #27
                          KLD, don't know the exact amount he's taking...but last night he told me he's taking a host of meds and vitamins...definitely neurontin and also gabapentin. he saw his neurosurgeon for a follow up yesterday...and they're going to up the dosage on both of them. but his neurosurgeon said that though it's painful, it's a good thing--means his nerves are working. i hope he's right.

                          so you wouldn't recommend neurontin?

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                          • #28
                            Originally posted by ccsmith409 View Post
                            KLD, don't know the exact amount he's taking...but last night he told me he's taking a host of meds and vitamins...definitely neurontin and also gabapentin.
                            Gabapentin and Neurontin are the same drug.

                            He saw his neurosurgeon for a follow up yesterday...and they're going to up the dosage on both of them. but his neurosurgeon said that though it's painful, it's a good thing--means his nerves are working.
                            That is not true. Neuropathic pain does not correlate with neurologic return, and occurs just as much in those with incomplete as complete injuries. I would recommend he work with a physiatrist, neurologist, or pain specialist instead of a neurosurgeon on the pain issue.

                            (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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                            • #29
                              Thanks for the feedback! I appreciate it!

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                              • #30
                                Originally posted by ccsmith409 View Post
                                Thanks for the feedback! I appreciate it!
                                Keep increasing the Neurontin (generic version is called Gabapentin - that is probably the version he is taking). We often use the names interchangeably.

                                It is really common to develop this symptoms/nerve pain after SCI. For us, they were the worst right after injury and in the hospital. Often doctors are too conservative with the medicines. They need to be increased until the symptoms improve. He should also have other medicines to take every day for when the pain gets bad, since it sometimes takes time (days...) for the increases in Neurontin to "kick in" and start helping. Most people take "opiod" pain meds daily too (at least when they are in the hospital) for "breakthrough" pain... that means any pain that happens despite the fact that you are already taking pain meds. These include morphine, vicodin, oxycodone, dilauded etc..

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