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Thread: syrinx?

  1. #1


    I'm a c-7 10 yr post quadriplegic. I've had a baclofen pump about 9 years. My body has loosened up in my external muscles, but my lower back has become stiff as a board and won't stay loose. I've got these symptoms... stiff back, ringing in my ears thats getting progressively worse. For a while I've noticed a catching in my lower throat right at the indentation. When I wake up at night sometimes and grab a drink I notice its not easy swallowing. Like I have to think aboutit. In the past two weeks I've had a "different" fuzzy feeling enter my arms. I've noticed I never get stronger and have days of weakness and then a day where I feel better. I've tried toignore this because nothing is ever found to be wrong. Yet I feel like an alien Just typing this is increasing the stiffness. Anyone else have these symptoms? I called my doctor this morning and they never called back which is typical. These symptoms sound like a possible syrinx to me. I guess the only reason I'm writing this is becausae I get so sick of this shit.

  2. #2
    Senior Member alan's Avatar
    Join Date
    Jul 2001
    Baltimore, MD
    Can you have an MRI with a pump? If not, would a CAT scan show a syrinx?

    I often wonder if all my pains, and the continuing worsening of them, is partly or fully caused by the C-4 to C-6 "hole" (no doc has ever called it a syrinx - too small, I guess), though, up through last June's MRI, it has apparently been stable in size since first seen on MRI in 1987.

    I can certainly understand the "sick of this shit." I'm tired of the torture of sitting, moving, laying down, breathing, hell, just being conscious, and knowing that things will just keep getting worse until I'm finally lucky enough to croak (in my next life, I'll definitely let myself drown and avoid all this crap. I'm sick to death of these sensations I live with.)


    There's a fungus among us, and I'm not lichen it!

    [This message was edited by alan on 02-02-05 at 08:48 PM.]

  3. #3
    You can get an mri with a pump. Don't let them tell you that you can't. They made me go through the hell of a myelogram a few years ago when they thought the pump was incompatible with the mri machines.

  4. #4

    What is the dose of baclofen that you are receiving with your pump? I am puzzled by the growing stiffness in your back. Did you get an MRI of your spine to rule out a syrinx?

    Regarding use of MRI with the Medtronics pump, you are correct. For anybody with a Medtronics SynchroMed Pump who is being told by their doctor or radiologist that they cannot or should not get an MRI, show them the following article:


  5. #5

    I'm currently at 523 micrograms/day. I have not had an MRI, but am going to suggest it tomorrow when I visit my physiatrist. I'm getting increasing nerve pain in my shoulders and arms. This weekend I had a few times where it really hurt to try and move my arm. It was like a pins and needles lactic acid burn. I went to my massage therapist Monday, and she released some of the muscle tension, but it comes back. Its feels like deep tissue tension that wants to be released. Like I'm stuck in molasses.

    5 years ago, I had a catheter leak for 2 months. After that was replaced, I was set at a rate of 450/baclofen per day. I was soooo loose and woozy. We notched down to 350/day, and I felt the best I had since my injury. Gradually, things have gotten worse. The answer to the physiatrist has been to crank up the baclofen, in the past. I was near 1000/day and felt no difference.

    One interesting therapy that has worked for me has been Visceral manipulation. You may be familiar with it. There is a physical therapist here that uses a form of light touch, and I'd call it chi. The premise is to let the body know the vascular system is ok. The heart being the most important organ in the body, the other muscles surrounding organs will tighten to protect the organs. When the muscles realize the vascular system is ok, they release. It is truly amazing. This website explains it better than I can probably...
    The first time he did it I was skeptical. He does a cranial mapping and moves his hand up and down within a few inches of my body. Feeling the energy he finds a hot spot and places his hand there. He'll talk out loud concentrating on the area, "vascular, visceral, vascular". I'm flat on my back during this for 45 minutes or so. He usually finds one hottest spot that tends to release the others. I get up and no more tone. No stiffness. Feeling spectacular. The problem is it only lasts a day or so. I havn't seen him in a year. I can't legitimize the cost. I would love to be able to do the technique on myself somehow. He has 20+ years of experience though. Its an art. That will be a question for my physiatris. Refer me to him again and I will pick his brain on learning the technique.

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