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    Please Help Me!!!

    I am a T-9 paraplegic resulting from a gun shot wound on 10/1/01. I was in perfect health until approximately March of last year ('03). In fact, I was putting in serios time in the gym and was in both excellent cardio and weight condition. Howver, that has all changed dramatically now... In March of last year after returning from a ski trip I began to have a dull ache-like pain in my stomach after eating. This was soon followed with a burning, low back pain well below my level of sensitivity. By the end of May "03 (several months later) my back pain was so bad that I was unable to exercise. I went to the National Rehab Hospital, not far from where I live just outside of Washington D.C. and recieved therapy for my back for about 10 weeks. I was able to function again, however exercise was still out of the question. During the next several months my stomach became more sensitive to random things and this dull ache following meals got significantly worse. By the beginning of this year('04) this pain began to follow drinking any liquid, in addition to food. Just the slightest drop of food or water gave me this bloated, stuffed, heavy kind of feeling. I found myself eating one meal a day while drinking all the fluids at that same time in order to avoid this pain for as long as possible. However by this point the pain had become constant and just inflamed by food and drink. I also developed a spitting problem... I can not swallow my spit without these same effects so I find myself spitting all the time. Over this year timeframe I had every GI test done that was available, ikn most instances several times. The only remarkable issue was that of profoundly slow gastric emptying. As a result I had a gastric pacmaker placed on my stomach on 4/30/04. Since this procedure was preformed I have gotten worse and worse nearly every day. There is no sign of infection and things seem to be in perfect order. The stomach pain has become outrageous and my back burns so bad that I am unable to sleep, drive, or cocentrate on anything. I can't deal with this and find myself more lost and in the most pain I've ever been in. I've been on huge dosages of baclofen and neurotin since my initial injury. I've tried many other neuro pain meds since the onset of these symptoms. I've been to Neuro, Neuro Surgery, Ortho, Vascular, GI, Pain Man., Rehab, everywhere!!! I'm lossing it here and don't know what to do. The pain is completely out of control and narcotics are doing very little to deal with it. Please someone help me!!!

    #2
    I can't offer any practical help, but perhaps a bit of information. It's quite possible tha what you're experiencing is a form of central pain that affects the gut. Unfortunately, central pain is poorly understood and this particular aspect of it is probably the LEAST understood or recognized. It's fairly recent that any doctors or researchers seemed to acknowledge that it was even possible to hav neuropathic pain in the gut and I'd dare to say that most still are ignorant of it.

    I have a page posted with some information about this symptom at PainOnline.org. It's written with doctors in mind, but feel free to take a peek at Peristalic or Visceral Pain: Central Pain In The Hollow Organs.

    You say the pain got worse after they put in the pacemaker. You may well need it for the sake of digestion, but I can't help but wonder whether the electrical pulses aren't doing you any favors down there as far as the pain goes.

    Just be aware that you're certainly not the first to complain of this kind of pain, that there are others in the same boat. Unfortunately, treatment is still a dificult challenge.

    Comment


      #3
      I have already had the device turned off. It made absolutely no difference whatsoever... Thankyou for the info on Central Pain!

      Comment


        #4
        Dear Sheckells,

        The natural history of receiving care for Central Pain involves a lot of wild guessing by doctors who don't really have a basis for what they do. Most of these misadventures wind up doing no good or making things worse. A good example is the nearly universal attempt to treat CP with tegretol, which has been shown in double blind studies to have no benefit. You will find a posting on Neurontin which is just the latest version of something that may help pain carried in the posterior cord, but is unproven in the anterior cord. Your experience indicates visceral pain may also run in the anterior cord.\

        A number of years ago, I succumbed to pressure and began to use TENS for my CP. Unfortunately it caused the shooting pains (posterior cord) to appear on my face, when they had been primarily in the lower legs. I discontinued the TENS, but for about two months I had very frequent shock pain in the face. I wonder if your pacemaker may be acting similarly. I am not expert on gastric emptying but if your pain is unbearable, it seem appropriate to ask your surgeon/gastroenterologist if other methods of encouraging gastric emptying are available. Your symptoms remind one of the loss of skin sensation which causes paradoxical skin burning. However, the emptying is a motor phenomenon, but your pain is a sensory one--so there ARE differences. I am not an expert so do not rely on this. Talk it over with your docs and ask them to read the material on David's site. They may never have thought of the partnership of dimished nerve function accompanying pain, nor the possible similarities to TENS induced pain. There is a bibliography at David's site, which includes an article by Beric, who was the first to report CP activation by TENS. Just a thought.

        Comment


          #5
          any injuries or falls happen on the ski trip ? and impact or new movement to this area, even something you thought was insignificant? ski pole top get poked in this area?
          just looking for possible causes. as i am sure you must have 1 million times..

          [This message was edited by metronycguy on 05-30-04 at 09:23 PM.]
          cauda equina

          Comment


            #6
            I have found that these problems that you are having are overwhelming. First, having a spinal cord injury makes you a much more complicated patient to diagnose. I am wondering what is currently the best hospital in the United States that can handle and treat people with SCIs? Craig Memorial in Colorado would be at the top of my list. I can tell from your post that there is a real sense of urgency.

            PN
            The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
            --General George Patton

            Complex problems need to be solved collectively.
            ––Paul Nussbaum
            usc87.blogspot.com

            Comment


              #7
              RSheckells ... my husband had symptoms very similar to yours and in the end it turned out to be a "ruptured" gall bladder ... assume nothing ... investigate the cause don't just treat the symptom ... wish someone had reminded me of that a year ago .... We even tried duragesic patches for the pain which only made everything worse .....

              Good luck and blessings to you!
              Obieone
              ~ Be the change you wish to see in the world ~ Mahatma Gandi


              " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
              Jane Siberry

              Comment


                #8
                Thankyou everyone for your responses! I am currently in the hospital and they have stuck an epidural catheter in my spine with Micaine and Dilauded. It seems to help my back quite a bit however it doesn't really do much of anything for my gut. They are baffled with what to do for my gut and say this is the first time they have ever come across anything like this. The plan now is to see if there is any carry over from the epidural. However last night the line mistakenly got disconnected and all the back pain came rushing back. So I see little chance that there will be any carry over of pain relief once the catheter has been removed. I was told today that we will attack the pain with a higher dose of Methidone after the epidural has been removed in order for me to go home. However I don't see how this is going to effect either pain in the slightest bit. I am petrified about going home in the next few days in agonizing pain! I can't function at home like this and don't have a clue what to do [img]/forum/images/smilies/redface.gif[/img] Any ideas or advice would be greatly appreciated. Thanks

                Comment


                  #9
                  I wish you the best of luck. Have a talk with your doctors before you leave about the risk of centralization of the pain. That's different than central pain. Centralization is when the pain is chronic and intense for months at a time and the nerve fibers themselves become sensitized to the pain, firing of their own accord. A neurologist that's familiar with this can explain it much better than me, but I'd also wager you'll come across many doctors that have never heard of this.

                  All I'm thinking is, if an epidural is helping tame the pain down a bit, then what about the prospects of using a pump for some meds? Whatever the case, I wish you the best of luck. It's a frustrating challenge for both the person in pain and any good, sympathetic doctor trying to help out.

                  Also, be sure to listen to obie and make sure the pain isnt coming from another source. I had an acute gall bladder attack a couple of years ago (even posted on here about it, from the hospital), and it was a horrible pain at the time. Especially after the stitches ripped loose after my surgery, but that's a whole 'nuther story.

                  Comment


                    #10
                    yes make sure they are listening

                    yes make sure they are really listening to you and not just assuming the gut pain is related to your other injury and not something new going on..
                    cauda equina

                    Comment


                      #11
                      I always ask the doc to repeat what I just told her to make sure she got it right. At first this pissed her off, now it is an effective way to communicate. The first doc who said that this communication method was silly, is no longer my doctor.

                      Comment


                        #12
                        I just found and read this entire thread with a great deal of interest. My daughter is a T11/12 complete, five years post injury. For the past six months, she's suffered from pain in her lower abdomen that also prevented her from functioning at her normal levels. It got so bad she couldn't even get dressed by herself. We saw an entire round of doctors, including a gynecologist (everyone wanted to push her off to him, thinking it was "female problems"). He was the first to suggest central pain, although he didn't say it in that many words. David, your article on this topic is fascinating. May I copy it to show her docs?

                        RSheckells, I can hear your pain and frustration in your posts. My heart goes out to you. It is so hard to be in such pain with no help coming in. Brianna finally has had some relief, though. Her urologist put her on a low dose of Elavil, thinking maybe her bladder was spasming. This has worked wonders, to the point where she is getting dressed independently and getting out again.

                        Please keep us posted on your progress. I wish you the best.

                        Vicky
                        ____________________________
                        "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
                        ~Geraldine Brooks, "Year of Wonders"


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

                        Comment


                          #13
                          Vicky,

                          Please use the article if you think it might help at all. If there's anything at PainOnline you think might help, go ahead and print it off.

                          I wish you the best of luck.

                          David

                          Comment


                            #14
                            Originally posted by Sci Mom:
                            , Her urologist put her on a low dose of Elavil, thinking maybe her bladder was spasming. This has worked wonders, to the point where she is getting dressed independently and getting out again.
                            Vicky
                            low dose of elavil for some of us also works well on central/neuropathic pain, so it still could be central pain
                            cauda equina

                            Comment


                              #15
                              Rsheckells and others,

                              The description of the fullness associated with eating and drinking suggest that there may be other problems besides neuropathic pain. When I first saw this and read that you "had every GI test done", I thought that gallbladder stones must have been ruled out. However, just in case they have not been, your gallbladder should be checked for stones and cause the symptoms that you are describing? Gallstones are very common in people with spinal cord injury. If you have not had gastroscopy, you should get one to rule out the possibility of ulcers.

                              Wise.

                              Comment

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