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    Mysterious symptoms, need help

    I've a C6 quad. I've been paralyzed 18 yrs. I used a foley up until 6 yrs ago when I got the mitroffanoff surgery. I have a tendency to get bladder stones, and have had many, large and small, removed through the years; some surgically and others not. I've been getting tiny stones regularly every 5 mos it seems now. Its been happening like this the last 2 yrs. I've been rinsing regularly with saline every night since I had the mitro, and recently started a Renacidin flush 1 month ago. I get AD (autonomic dysreflexia) from light to moderate, with the stones; that's how I know they're back. Its a very specific AD; light sweats, hot flashes, etc.

    Last week my urologist flushed my bladder with saline via the urethra in-clinic to remove my latest bout of stones. It seemed to have taken care of it, but tonight something painful in my abdomen occured when I leaned forward really far and to the right in my chair. I had
    sudden AD accompanied with a strong headache, but once I sat upright, it slooooowly got better. VERY disconcerting, as I can feel the lingering headache even now. I've also been getting heartburn out of the blue for the first time in my life. My urologist said there's a possibility a tiny fleck of stone or two might be left still (after the procedure), but he said they should pass on their own through my 14 french cath via my stoma. And if it doesn't, he said he'll do the procedure in the hospital, again. I've also been getting unexplained lightheadedness for a month.

    I'm not sure what's causing this pain. It seems different somehow...maybe...but it could be just a tiny leftover stone too. I just don't know. With the heartburn factored in, it makes me think I may have an ulcer, however I've never had one before. I was knew a quad who died of an ulcer - she didn't feel it, it got so bad she bled to death. Are ulcers common in quads? Or my other thought - a hernia.

    I should also note I had really bad AD - with the same headache - with a heavy bowel movement about 2 weeks ago too. They're probably unrelated, but it makes you wonder since I never get headache-type AD with my bowel prgm; ever.

    I'm seeing my regular doctor for my bi-annual physical Apr. 19th. I talked to him last week about my bowel prgm AD, but now I am going to call him Monday to tell him about this. This is all so stressful - mysterious pain/AD...SCI is no fun; especially when you've been hurt awhile and new things start popping up. Any feedback would be greatly appreciated.
    May the fetus you save be gay

    #2
    I would definitely speak with your physician. And I hate to say this, but it is not uncommon for your symptoms to change. It goes, with our bodies changing.

    Does your ad go away with any change in position? ANything else?
    CKF
    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
      Get an upper endo. I almost bit the dust bleeding with an ulcer that I never had before Doctor is trying to figure out why . New drs were, "Wow", you were bleeding....also note if your stool is darker than usual. Sucks aging with SCI .
      Get involved in politics as if your life depended on it, because it does. -- Justin Dart

      I shall not tolerate ignorance or hate speech on this site.

      Comment


        #4
        It could also be gall stones. Abdominal pain in the right upper quadrant and indigestion are two common symptoms. You didn't say how high in your abdomen the pain was...but this is something to think of.
        ~Mandy~
        SCI as a result of spinal surgery
        TiLite Aero Z!!!

        Comment


          #5
          Originally posted by Theophania View Post
          I've a C6 quad. I've been paralyzed 18 yrs. I used a foley up until 6 yrs ago when I got the mitroffanoff surgery. I have a tendency to get bladder stones, and have had many, large and small, removed through the years; some surgically and others not. I've been getting tiny stones regularly every 5 mos it seems now. Its been happening like this the last 2 yrs. I've been rinsing regularly with saline every night since I had the mitro, and recently started a Renacidin flush 1 month ago. I get AD (autonomic dysreflexia) from light to moderate, with the stones; that's how I know they're back. Its a very specific AD; light sweats, hot flashes, etc.

          Last week my urologist flushed my bladder with saline via the urethra in-clinic to remove my latest bout of stones. It seemed to have taken care of it, but tonight something painful in my abdomen occured when I leaned forward really far and to the right in my chair. I had
          sudden AD accompanied with a strong headache, but once I sat upright, it slooooowly got better. VERY disconcerting, as I can feel the lingering headache even now. I've also been getting heartburn out of the blue for the first time in my life. My urologist said there's a possibility a tiny fleck of stone or two might be left still (after the procedure), but he said they should pass on their own through my 14 french cath via my stoma. And if it doesn't, he said he'll do the procedure in the hospital, again. I've also been getting unexplained lightheadedness for a month.

          I'm not sure what's causing this pain. It seems different somehow...maybe...but it could be just a tiny leftover stone too. I just don't know. With the heartburn factored in, it makes me think I may have an ulcer, however I've never had one before. I was knew a quad who died of an ulcer - she didn't feel it, it got so bad she bled to death. Are ulcers common in quads? Or my other thought - a hernia.

          I should also note I had really bad AD - with the same headache - with a heavy bowel movement about 2 weeks ago too. They're probably unrelated, but it makes you wonder since I never get headache-type AD with my bowel prgm; ever.

          I'm seeing my regular doctor for my bi-annual physical Apr. 19th. I talked to him last week about my bowel prgm AD, but now I am going to call him Monday to tell him about this. This is all so stressful - mysterious pain/AD...SCI is no fun; especially when you've been hurt awhile and new things start popping up. Any feedback would be greatly appreciated.
          Theophania,

          From your description "something painful in my abdomen occured when I leaned forward really far and to the right in my chair", I think that this is not from your bladder but possibly something related to your hip. As you know, many people with spinal cord injury have hip dysplasia (dislocation and subsequent atrophy of the hip joints).

          When you leaned very far to the right, you may have dislocated your right hip, accounting for the sudden pain. Do you have increased spasticity in the legs? Does the AD subside when you are lying down? How old were you when you were injured? As many as 80% of people who were injured as children develop hip instability or dysplasia. http://www.ncbi.nlm.nih.gov/pubmed/2394810

          Wise.

          Comment


            #6
            do you see this gypsy judy? you probably did dislocate your hip.

            My grandma was adamant that apple cider vinegar dissolves kidney and bladder stones.
            a tablespoon a day.
            anyone ever heard of this?

            Comment


              #7
              Thanks for the responses everyone. I'm still trying to get a hold of my dr. I'm going to call him back today and hopefully he'll take me seriously, and order a scan of my abdomen, lower and upper, to rule ulcers and stones out. Yesterday before yoga while in my van, the sudden AD came on again, soaking my neck, then dissipated.

              Wise, the hip dislocation possibility may be a possibility, but since the pain does change with positioning, and will go away for a few hrs, and then come back, I'm not positive if the pain source is there. I'll tell this to my dr though and see what he says.

              SCI nurse, the AD will go away with a bladder rinse, at least it seemed to last night, so I'm thinking today it may be more bladder stone-related than I thought.

              Curvy, I can't pin-point the pain unfortunately. I don't think its too high though; rather its behind my belly button area (I think). Pretty hard to tell.
              May the fetus you save be gay

              Comment


                #8
                Update: After my dr refused to do a CT scan and his insisting on treating me for an anal fissure (?) since we last spoke, I went to the ER last night, where I had a dr who actually listened to me and ordered a CT scan.

                Turns out - I have a quarter-sized fibroid cyst on my uterus. I've never had fibroid cysts before so this was a bit unexpected. At least I know what's causing the AD now. Nothing else showed up on the CT scan so it must be it.
                May the fetus you save be gay

                Comment


                  #9
                  Originally posted by Theophania View Post
                  Update: After my dr refused to do a CT scan and his insisting on treating me for an anal fissure (?) since we last spoke, I went to the ER last night, where I had a dr who actually listened to me and ordered a CT scan.

                  Turns out - I have a quarter-sized fibroid cyst on my uterus. I've never had fibroid cysts before so this was a bit unexpected. At least I know what's causing the AD now. Nothing else showed up on the CT scan so it must be it.
                  Theophania, I am so glad that you have found the cyst. Yes, this would explain the AD.

                  Wise.

                  Comment


                    #10
                    me to! thanks wise
                    May the fetus you save be gay

                    Comment


                      #11
                      Originally posted by Theophania View Post
                      I should also note I had really bad AD - with the same headache - with a heavy bowel movement about 2 weeks ago too. They're probably unrelated, but it makes you wonder since I never get headache-type AD with my bowel prgm; ever.
                      I never had headaches when emptying my bowels either until the uterine problem. It seems like there are zero studies on womens issues and paralysis.
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                      Comment


                        #12
                        Wise, I actually have a follow-up question. The radiologists in the ER said they saw a cyst on my uterus and recommended I follow-up with my gyno and get an ultrasound of my uterus/ovaries. I did that on Friday. At that appointment they said they saw nothing on the ultrasound, and my gyno doctor (who admitted she's not good a reading CT scans) said she didn't see anything on the CT scan herself. I have the film.

                        What should I do? Who should I trust? The CT scan showed nothing else of note, and the AD persists. I'm thinking of seeing a different gyno for a 2nd opinion.
                        May the fetus you save be gay

                        Comment


                          #13
                          Originally posted by Theophania View Post
                          Wise, I actually have a follow-up question. The radiologists in the ER said they saw a cyst on my uterus and recommended I follow-up with my gyno and get an ultrasound of my uterus/ovaries. I did that on Friday. At that appointment they said they saw nothing on the ultrasound, and my gyno doctor (who admitted she's not good a reading CT scans) said she didn't see anything on the CT scan herself. I have the film.

                          What should I do? Who should I trust? The CT scan showed nothing else of note, and the AD persists. I'm thinking of seeing a different gyno for a 2nd opinion.
                          I had the same issue. I had a CT taken at the ER and was told I had a large ovarian cyst. I saw my gyno and had an ultra sound and they came back clean. ????? Whats the deal? why did the CT show it and not the Ultra sound?

                          Comment


                            #14
                            I was told my bladder had to be full to view the ovaries by ultrasound so I have been unsuccessful because of the foley I've had for a year and a half.

                            Were you told the same?
                            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                            Comment


                              #15
                              Originally posted by lynnifer View Post
                              I was told my bladder had to be full to view the ovaries by ultrasound so I have been unsuccessful because of the foley I've had for a year and a half.

                              Were you told the same?
                              They filled my bladder when I was there and did the testing then they empitied it and did more testing.

                              Comment

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