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  • #31
    Originally posted by Rev Coleen View Post
    I was in the ER yesterday because I hurt so bad I couln't stand at all - sitting even didn't help - they did a 'phone consult' with a neuro-ortho pod, who said my condition "isn't bad enough for surgical intervention." I had the feeling that I was being treated like a 'drug seeker' instead of someone with a 'real' problem, so I guess I'll just have to wait it out. It'll either get better or worse, but me complaining about it isn't the right thing to do - you guys are dealing with your problems, I need to deal with mine.
    Instead of waiting it out, maybe you should make an appointment to see a neurologist (in person and not over the telephone) and then an appointment to see a neurosurgeon to see if there are any surgical interventions available to treat your condition.
    Daniel

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    • #32
      I'm not trying to be ungrateful, testy or huffy, but as was recently pointed out to me, someone else & even I said I wasn't an SCI, so I really don't belong here. "It does not appear that the OP has a spinal cord injury, but instead has significant spinal (not cord) problems." I don't even know what (besides pinched nerves) my problem is - maybe it's my imagination, like the ER people suggested.

      I thank you all for your advice & suggestions, but since I was informed that my insurance is out as of Aug 1st & I'm on a small disability raising two kids, I won't have the funds to throw at a lost cause. And I didn't talk to the neuro guy, I wasn't given the oportunity - the E.R. doctor did & told me what he said. Also, the ER people had me pee, then did a bladder scan - after thinking I was emptying my bladder, there was 300cc's left. Oh well, guess I'll just have to sit a lot longer.
      I really don't see that there's any other options besides waiting it out, as without insurance I can't even see my PCP or get my meds. I'm Borderline Personality Disorder & have anxiety disorder & a heart condition, so I guess they saw that & said 'crazy' so don't bother. It'll get worse without my meds, but if it gets too bad, I'll ship my kids off to family members until the insurace trash is settled.

      I've taken up enough of your generous time, and really do thank you for it.
      Last edited by Coleen; 07-24-2009, 04:37 PM. Reason: as usual, spelling

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      • #33
        Has anyone got any ideas as to what forum I should be checking into or should I not? I'm told I'm not SCI, so I don't belong here, so where do I belong? Can't get out of the house very easily for various reasons, only one being my back/leg/bowel/bladder issues. I still have some rectal tone, so whatever (pinched nerves) I do have isn't 'bad enough' to be bothered with yet - I'm just afraid that (and of) being parlyzed will be the time it's decided I'm 'bad enough'. No insurance (so far) after the 1st, so...
        Last post, sorry to be a broken record.

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        • #34
          Originally posted by Rev Coleen View Post
          I thank you all for your advice & suggestions, but since I was informed that my insurance is out as of Aug 1st & I'm on a small disability raising two kids, I won't have the funds to throw at a lost cause. And I didn't talk to the neuro guy, I wasn't given the oportunity - the E.R. doctor did & told me what he said. Also, the ER people had me pee, then did a bladder scan - after thinking I was emptying my bladder, there was 300cc's left. Oh well, guess I'll just have to sit a lot longer.
          I really don't see that there's any other options besides waiting it out, as without insurance I can't even see my PCP or get my meds.
          Originally posted by Rev Coleen View Post
          Has anyone got any ideas as to what forum I should be checking into or should I not? I'm told I'm not SCI, so I don't belong here, so where do I belong? Can't get out of the house very easily for various reasons, only one being my back/leg/bowel/bladder issues. I still have some rectal tone, so whatever (pinched nerves) I do have isn't 'bad enough' to be bothered with yet - I'm just afraid that (and of) being parlyzed will be the time it's decided I'm 'bad enough'. No insurance (so far) after the 1st, so...
          Last post, sorry to be a broken record.
          I'm sorry, I don't mean to come across as snarky, but I'm not understanding why you're looking for an internet forum or doing self-help playing armchair doctor if you believe you have a serious medical condition that can result in paralysis.

          If your insurance expires as of August 1, you still have 6 days of insurance left, so you should really make the most of those six days, especially if you are afraid of being paralyzed.

          An ER is for emergent issues. An ER is not a substitute for primary care nor is it a substitute for making an appointment with a specialist. Make an appointment with a neurologist. A postvoid residual of 300cc seems pretty significant, and the fact that you're worried about it means that you should consider seeing a urologist as well.
          Daniel

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          • #35
            I'm not trying to play armchair doctor - I wanted to know if I had any real options & what they were. I'm afraid of the possibility of being paralyzed, but I have an anxiety disorder, so that's contributing. I'm worried, but no one else who can do anything seems concerned about my 'little problems'. Won't bug you - or another forum - again.
            Last edited by Coleen; 07-24-2009, 06:36 PM.

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            • #36
              "...got any ideas as to what forum I should be checking into or should I not? I'm told I'm not SCI, so I don't belong here."
              Who told you that?

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              • #37
                You may not have spinal "cord" damage- you have pressure on the nerves that come off the spinal cord. There is recent research about medical treatment vs. surgical treatment fo such. But I am going to highy recommend you see a surgeon or neurologist but in the meantime
                Naproxen 500 mg po twice a day( or some NSAID at highest dose- take every dose even if no pain for atleast 6-8 weeks ( if not longer), take with food and drink alot of water,
                Exercise /physical therapy-stretching, range of motion- no lifting at all for a while,
                1500 mg Calcium and Vitamin D to help keep healthy. Do you have osteopenia or osteoporosis?
                Google- Williams Back exercises. Start slowly and build up.

                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.

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                • #38
                  Well, technically a cauda equina injury is NOT a SCI. It is damage to the cauda equina, which are peripheral nerves, but they are included in the category of spinal cord injury and disease, and regardless, these forums are open to anyone with any form of paralysis.

                  I am not sure why Rev feels unwelcome here as so many people have answered her questions and made very good suggestions. I suspect it is because she did not get the easy answers she had hoped for instead.

                  (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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                  • #39
                    No. It's not because I didn't get the "easy answers she had hoped for instead." A certain someone posted a rather rude reply & I took offence. I'm sorry I'm being "snarky" - but I don't have 6 days of insurance, I have 4 working days, and I did attempt to get a neuro/surgical consult, but was told I need a referral from my PCP for that.
                    I'm very frustrated with the answers I'm getting in the town I live in, not with you people.

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                    • #40
                      Rev Coleen,

                      I am sorry you are having such a hard time.

                      What kind of pain medicine were you or have you been taking since your accident? What kind of pain medicine are you taking now?

                      You mentioned pain in your hips and one leg. Can you describe that pain?

                      Also, when you had your accident, can you describe your fall?

                      One more thing, if you lay down flat on your back and relax, what direction are your toes pointing in?

                      When you stand can you do side bends? Does one side hurt more than the other? If so, is it the same side that your leg pain is on?

                      I agree with KLD, that you do not appear to be spinal cord injured, however it is clear that you have chronic spinal conditions that this acute injury has aggravated. From what I read here, you have a lot going on in your life that
                      is making proper treatment difficult. Many like you are facing similar frustrations these days.

                      As the SCI nurses have urged you, I would continue to try to get appropriate intervention from specialists to address your elimination issues. Other than that, your main disabler seems to be acute pain.

                      This thread was chopped up and hard to follow, I hope I am following it correctly. One more question, do you still have an active PT order? What does it say?

                      Mary
                      1FineSpineRN

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                      • #41
                        The accident - I went down on my right knee, then rolled until I threw out my left leg to stop myself - I was at all kind of odd angels during the roll. The pain: my calf aches like a terrible toothache all the time, there's a pain going down the back of my leg from my tailbone to my toes.
                        If I lay flat & relax, my toes either point downward or to the left side on my left leg, my right seems 'normal'
                        I'm only taking ibuprofen right now, I was prescribed vicodin 75./750, but the ibuprofen gives the same relief (not much) but does have the 'anti-inflamitory' properties.
                        I try to do the exercises the PT gave me (I have 12 visits left, which is all the state insurance has allowed me) including bending at the waist, but the pain is so bad when I do that I'm in tears.
                        After my chemo (breast cancer, both sides) we discovered I'd become allergic to percocet, morphine, demerol & codiene, so those drugs are out, even if my PCP would prescribe them. She's nervous about prescribing pain meds, for several reasons - I was on vicodin for a year with my neck before the surgery - bulging disks at C4 - C8 were actually pressing on my cord, and I had a 'hard time' getting off of them.
                        I am still attempting to resolve my insurance issues, and am not trying to play armchair doctor - I was trying to collect advice, suggestions & a little knowledge so I could talk to my PCP about my issues. According to an arthritis specialist, I have DJD in my spine, knees, hands.
                        Last edited by Coleen; 07-26-2009, 10:24 PM. Reason: forgot something

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                        • #42
                          Originally posted by Rev Coleen View Post
                          And someday I'm going to figure out how to make MRI & CT machines that will work in an upright position - so much is lost when doing these laying down, when most of the damage is much more visable in an upright or even semi-upright position!
                          Hi Rev Coleen,

                          There are MRI scanners that work in upright or even semi-upright positions.

                          WHY A CONVENTIONAL MRI IS NOT “GOOD ENOUGH”

                          Given the “miss rate” of static MRI reported by UCLA, a conventional static MRI is obviously not good enough. Only the Fonar UPRIGHT® Multi–Position MRI can see your patient’s problem in the position he or she experiences it.
                          Here's a Google link. You can do an Internet Search for one in your area or call up any local MRI imaging facility and ask them for a referral.

                          Good luck,

                          Bob.
                          "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

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                          • #43
                            Thnks for that information - I'll see if that's available around here (Washington State)

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                            • #44
                              Rev Coleen,

                              Since you have some PT available, I want you to ask around for a therapist who is very familiar with spine. Then, I want you to tell that person to test the alignment of your SI Joints. Also have them look at the sacrum. I suspect that if you stand upright you would have difficulty pivoting your hurting side toes inward as well. Make some calls. Let me know what you find out.
                              1FineSpineRN

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                              • #45
                                you're correct about the toes thing & I'll let you know

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