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A Thread to bitch and complain?

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  • Well, just got back from the doctor's office. The HO has definitely taken hold. Xray shows a large sheath of bone starting from mid-femur running all the way up past my hip. They're going to call me back with options, probably more radiation at this point, I want to avoid surgery if I can.

    One thing I can't stand is when doctors say things like "well, if we do surgery, it doesn't really matter how much muscle we remove because you can't move your leg anyway." I've encountered this attitude several times. I haven't given up hope that someday, maybe I might walk again.


    • Originally posted by bob clark
      Hi Rich,

      Seems like you got a full plate there. I live by myself in a house too (with a dog) but I've become accustomed to being alone. Probably why I write so much BS here!

      I no longer have urinary leakage problems but have an ocassional "accident" that keeps the washer and dryer running. It's a bit overwhelming having to do everything yourself... it would be nice to once in awhile say "Honey, would you get me a cup of coffee please." But what's a greyhound know?

      And what's a social life?

      I hope you get your bathroom squared away... that'll make things a lot easier for you.

      I don't know what else to say except keep on keepin' on. Hopefully you'll find some social interaction when you start going to school. It will force you to time your activities differently but you'll get used to it. I went back to school for a little while when I was 2 years post-injury. My 28th year anniversary was last month... no big deal.... I did tie one on though. First beer(s) in a couple of weeks.

      Not much that I can suggest about your UTIs.... I no longer get them. But I keep a stash of Cipro and Levaquin here just in case. But that's not recommended... go to a urologist... especially one who knows a thing or two about SCI and/or neurogenic bladders. Like I'm gonna go to the doctor (if I had one) feeling sick as a dog with a 102*F temperature. I don't have a car so that makes things difficult logistic-wise.

      Best of luck to you Rich... I hope you hit the lottery.


      EDIT: A UTI will give you side and back pain. Or maybe you're getting neuropathic pain and need to try some Neurontin (generic is gabapentin) or some other neuropathic pain blocker. But they'll want to test your bladder, gall bladder and kidneys for stones first. Maybe it's time for a check-up.

      I lived in Philly for awhile. Was born and raised in Levittown PA for 20 plus years.

      Thanks for your ideas.
      You've been through some of the things that I am experiencing.
      It's a balancing act- having to readjust to make things better. I'm pretty new to this. My overall discomfort has been high, recently.

      School is starting up soon.
      I'm looking forward to the routine.
      I continue to fix up the house. A woman is coming with a prelim plan for the bathroom, this week. Yahoo!

      I just saw a group of fawns running on the other side of the creek. They just pranced back the way they came. Nice diversion!

      Anyway, I really appreciate your support.


      • Zero,
        Hopefully, you'll get a break from the ongoing issues, soon.
        Sometimes I think to myself- "It couldn't be much worse."
        Then I realize there's still a lot of good stuff going on.


        • So I had the MRI yesterday. What a performance. I got told I would have to transfer from my own chair into one of the hospital's really nasty crappy chairs, because my own chair might get sucked across the room by the magnets and kill someone.
          I had to do a chair-to-chair transfer, which I never normally do. This chair was seriously rubbish - it had solid tyres, but the brakes did nothing at all - I think they were not aligned properly. So in order than I did not end up on the floor, as well as my bf, I had 2 nurses holding the chair still. This chair also had plastic sideguards - fixed, naturally. So it was bad trying to get my bum over them. I feared for my ass - but it appears unharmed.

          Had the mri. They did whole spine - dunno why, as the letter I had said just thoracic spine. I did say that the scan was because of the unexplained stomach/side pain - nothing to do with my spine. But anyway.
          This machine had the vent blowing air in at the top - I was completely freezing and shaking uncontrollably.

          Getting off the mri "tray" - ugh. I needed help sitting up quickly, as the tray is so narrow I had hardly any room to get the leverage I needed. I hated that - I have no trouble sitting myself up usually.
          I nearly passed out as well, due to sitting up so fast. Getting into the nasty chair wasn't too bad, but getting back into my own from that was grim.

          Got in the car, and great! I suddenly realized I needed to pee, due to the sudden goosepimples and feeling weird. So I had to discreetly cath in the car, but the catheter decided not to go in (sometimes I get an obstruction - likely sphincter spasm). By the time I got it in, my head had started pounding, and I was sure I was going to pee all over the car. Amazing I didn't pee myself. One plus.

          Should hear the results in the next 2 or so weeks.
          Today is rotten - my side is hurting more than it has for a while - likely all the twisting about yesterday. Moan over.


          • Glad to hear you had the mri, but sounds like a rotten day. Not sure I COULD transfer from my wheelchair to one with fixed sides, and I can relate to the sitting up issues. We need somewhere to put our hands. Hope you get an answer soon. This has gone on WAY to long for you!
            T7-8 since Feb 2005


            • Thanks sjean. I'm hoping to get some answers, for sure.
              I've spent all day in bed so far (well, on) as the pain has increased. Going to get up soon though, with the aid of more codeine.

              Re: the chair with sides - well, there was a bit of seat in front of the guards. I knew I had to do it, or I wouldn't get the scan. It helped that there were 3 people helping me do the transfers! I made sure to have a folded up sheet over the wheel and guard too, for some padding.
              My bf actually lifted me cleanly off the nasty chair and back into my own afterwards...he surprised himself, as he didn't know he could lift me.


              • Karen, if that ever happens again why don't you tell them you're incapable? If you were in a hospital they must have a way to transfer people, whether it be strong backs or a hoist.

                Don't you HATE when you have to use their nightmare clunker chairs? The only advantage is that it makes you really grateful for your little race car chair!

                And yay for your bf!
                Does This Wheelchair Make My Ass Look Fat?


                • I have a neurogenic bladder which was caused by a colorectal surgery. I have to catherize about 5 times a day and never feel emtpy. When I do have an urge to void I only void about 50. Please any suggestions?


                  • Originally posted by betheny
                    Karen, if that ever happens again why don't you tell them you're incapable? If you were in a hospital they must have a way to transfer people, whether it be strong backs or a hoist.

                    Don't you HATE when you have to use their nightmare clunker chairs? The only advantage is that it makes you really grateful for your little race car chair!

                    And yay for your bf!
                    I probably would insist on getting on a bed and being slid over on one of those big bendy boards (patslides) next time. There weren't any beds nearby though, so I thought it'd be huge amounts of messing to ask to get on a bed. I also felt a little embarrassed at the idea of asking - I don't know why.

                    Yeah, why is is that hospitals have the heaviest, nastiest, most falling-to-bits wheelchairs in existence? And this one was set for someone about half my height - or so it seemed - my knees were almost touching my chin, the footrests were set so high (ok, slight exaggeration).

                    Lol, my bf is fab.


                    • That is ridiculous, Karen! I can't believe they made you transfer to another chair. I've never encountered that. They'd simply move my chair out of the room to do the test.


                      • mri transfer

                        Yes, it really is true that your chair cannot even go into the mri scanner room - and things really can fly into the scanner causing significant harm -however, you should not be asked to do a chair to chair transfer either.

                        The best solution is to just ask to have your mri at a hospital based scanner (instead of free-standing mri imaging center) because it is easy to get a bed then tranfer from the bed to the table - we do this all of the time. bye...j.


                        • Originally posted by jjjeep4
                          Yes, it really is true that your chair cannot even go into the mri scanner room - and things really can fly into the scanner causing significant harm
                          That's not completely true. I've had any number of MRIs and have always taken my chair into the scanning room to transfer onto the bed. My chairs have always been made of predominantly non-ferrous materials (aluminum and titanium). I would have a problem if I was told that I could not take my wheelchair into the scanning room at all.



                          • Most if not all wheelchairs have steel nuts and bolts and on them. And steel ball bearings and perhaps other small pieces of steel connectors etc. How much magnetic pull there is on them I don't know. And how close the chair gets to the large magnet I'm not sure since I've never had an MRI test performed on me.

                            My sister worked in a lab at the steel mill that I worked at. She would test the tensile strength of the rolled sheet steel, inspect it microscopically and perform other tests on it. Some of these procedures involved grinding the samples on a grinding wheel/stone. She claimed she always wore her eye protection (in the mill everyone is supposed to wear eye protection all the time... on the railroad I only did when the big bosses were around or I was in the open hearth, blast furnace or other dangerous areas) but when she went in for an MRI they had her fill out a form and I guess it asked her if she ever worked around steel grinding or whatever. She answered "Yes" so they did a simple metallic test of her eyes with a small metal detecting device and examined them closely under high magnification. They claimed if she unknowingly had a small shard of steel in her eye(s) that the MRI machine could pull it right through her brain. That's what she told me.

                            I saw a show where this fellow had a very heavy duty chain and slowly pushed it close to a magnet used in an MRI machine. It was just the metal magnet before it was encased in plastic and hooked up to anything electrical or electronic. Just the large round donut-shaped magnet. The chain stood straight out and he leaned back on a 45 degree angle as the chain and the magnetism held him in that position. Any closer and the chain would have been pulled right out of his grasp. They're some very powerful magnets in those MRI machines!

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


                            • Lol, what have I started?

                              Before this scan, I had only had several mris at the time of my injury (one for diagnosis, and then a few after the laminectomy).
                              So I was on a bed all times, and there seemed no problem with getting my bed right next to the machine and sliding me on a board.

                              My chair is aluminium - this is not magnetic? But then, there's are the bolts etc to consider.


                              • mri........

                                There are usually kind of ante-rooms to mri that can have beds/chairs etc...patients are able to be tranferred to the mri table....but the magnet is so you pass the threshold and only increases as you get closer. We actually have to have very specialized iv pumps and ventilators/tables/oxygen tanks/monitors etc to use in mri -we cannot even use our normal equipment - and have to transfer mri patients to the specialty equipment - we do have great respect for the magnet.

                                Any metal/even microscopic flecks in the eyes/can potentially dislodge and cause severe damage. Most implanted hardware is ok but has to be specifically cleared. Stents/clips are ok after a certain time frame.

                                I routinely take extremely complicated/vented/sci patients to mri - the hospital mri is much more used to handling extra equipment and should make mri trips for sci patients much easier - requesting a hospital based mri is usually easy when you go to the doc office.

                                Of note, the mri magnet does have an emergency shut down, and requires a long time to re activate.