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Thread: New Member - a lil more info - Dr. Wise please

  1. #1

    Arrow New Member - a lil more info - Dr. Wise please

    My neuro has thrown his hands up ... will be going to Johns Hopkins in May and am going to pain management now. Dealing with syringomyelia, TM, tested positive for MS (o-bands) not dx with. In short form here are results from last mri's:
    Cervical: mild degenerative character observed at C5-6 greater than C6-7, including mild non lateralizing posterior disk bulges and concurrent annular tears. Only C6-7 disk bulge may have minimally progressed.
    Brain: Normal study. to note a stable single punctate hyperintensity in right subcortical white matter in fromtal lobe near the anterior portion of the external capsule. non specific and does not suggest demyelinating disease.
    Thoracic spine: posterior disk bulding at C5-6 ( disgenerative ), no cord distortion or change from prior study. long linear spindle-shaped CSF canal and/or syrinx which extends from upper T3 down to T12. Maximum width of syrinx is 3 mm and appears at the upper T5 vertebral body level. The syrinx signal appears slightly discontinuous at T6 and then resumes at T8 with a thin continuation caudally as described above. Slight anterior spondylotic bulges at T7-8, 8-9, 9-10.

    My neuro throws his hands up at me, refers me to Johns Hopkins and pain management but here I sit until May with legs that feel like cement slabs, same with feet...pain in arms/elbows/hands. Even when standing up after sitting for a few minutes, it is excruciating! and of course, back pain. Am on 15 mg. slow release morphine (2 in the a.m.), 1 after lunch, 1 at night...hydrocodone for breakthrough, nortriptyline to sleep. What the heck is wrong with me? why am I in so much pain and what is keeping them from an MS dx...not that I want one. The pain gets worse and worse each day and even sitting is becoming painful and then I don't want to get up because my feet feel asleep on top of the pain. I just feel like I'm carrying the weight of the world on me along with numbness/tingling. Please give your opinion..It would mean the world to me .... thank you!

  2. #2
    Quote Originally Posted by NCLizD View Post
    My neuro has thrown his hands up ... will be going to Johns Hopkins in May and am going to pain management now. Dealing with syringomyelia, TM, tested positive for MS (o-bands) not dx with. In short form here are results from last mri's:
    Cervical: mild degenerative character observed at C5-6 greater than C6-7, including mild non lateralizing posterior disk bulges and concurrent annular tears. Only C6-7 disk bulge may have minimally progressed.
    Brain: Normal study. to note a stable single punctate hyperintensity in right subcortical white matter in fromtal lobe near the anterior portion of the external capsule. non specific and does not suggest demyelinating disease.
    Thoracic spine: posterior disk bulding at C5-6 ( disgenerative ), no cord distortion or change from prior study. long linear spindle-shaped CSF canal and/or syrinx which extends from upper T3 down to T12. Maximum width of syrinx is 3 mm and appears at the upper T5 vertebral body level. The syrinx signal appears slightly discontinuous at T6 and then resumes at T8 with a thin continuation caudally as described above. Slight anterior spondylotic bulges at T7-8, 8-9, 9-10.

    My neuro throws his hands up at me, refers me to Johns Hopkins and pain management but here I sit until May with legs that feel like cement slabs, same with feet...pain in arms/elbows/hands. Even when standing up after sitting for a few minutes, it is excruciating! and of course, back pain. Am on 15 mg. slow release morphine (2 in the a.m.), 1 after lunch, 1 at night...hydrocodone for breakthrough, nortriptyline to sleep. What the heck is wrong with me? why am I in so much pain and what is keeping them from an MS dx...not that I want one. The pain gets worse and worse each day and even sitting is becoming painful and then I don't want to get up because my feet feel asleep on top of the pain. I just feel like I'm carrying the weight of the world on me along with numbness/tingling. Please give your opinion..It would mean the world to me .... thank you!
    Liz,

    Let me enumerate your symptoms.
    1. Standing is excruciating
    2. Legs like cement slabs.
    3. Arm/elbow/hand pain
    4. Sitting is becoming painful
    5. Feet feel asleep, numbness/tingling


    Signs
    1. C5/6 disk protruding
    2. C6/7 mild degeneration
    3. Small syrinx T3-T12, 3-mm width at T5
    4. O-bands (CSF)
    5. Slight spondylosis T8/9/10.


    Negative
    1. No plaques
    2. No cord compression by disc
    3. No tethering
    4. No spinal stenosis
    5. No enhanced signal


    Some of the negatives are assumed because I imagine that they would be mentioned if there were present. None of the signs explain the symptoms. The absence of plaques and other signs strongly argue against MS. O-bands are non-specific. You don't have serious osteoarthritis or spondylosis that would explain the symptoms.

    I am wondering more about the possibility of diabetes or hormonal causes.

    Wise.

  3. #3
    Senior Member
    Join Date
    Sep 2007
    Location
    Fithian, IL
    Posts
    1,967
    Liz - my heart just aches for you. My husband has MS and I don't wish that on anyone but the whole not knowing has to be awful. I hope you find the answers. -- Lisa

  4. #4
    Wise...you don't think that all these symptoms have anything to do with syringomyelia and transverse myelitis??? I thought that was what was causing all this....I'm just wondering if this pain ever ends or if this is something I'm stuck with forever. My pain management doctor says yes i will deal with this for life and there is nothing i can do to prevent the syrinx from growing or to help it stop...I have been tested for diabetes and do not have it. Please give me your best shot!
    Last edited by NCLizD; 03-23-2010 at 12:55 PM. Reason: left out some things

  5. #5
    MS Wife...thanks so much for your reply. I have not been diagnosed with MS...just a remote possibility I suppose...but the other two disorders are absolutely horrid. Thanks for your concern and hope to hear from you again

  6. #6
    NCLizD,
    I was diagnosed with syringomyelia in July09. I know what you are feeling and I would bet it is related to your syrinx. Many doctors say "the syrinx is too small to expain your symptoms" The people I have spoken to on http://www.smawareness.ca/ and www.asap.org have heard it a thousand times. I am so sorry this is happening to you. BUt I feel and understand your pain. I have syrinx c5-t11. 3.8mm at its widest. I just started embeda 20mg for the pain with oxycodone for breakthrough pain. I am also on lyrica. i USED to be on amitriptyline but it caused hypertention for me so it was stopped. I also can not sit or stand more than 30-40 min without being in severe pain. I have a burning pain in my neck, back and aching shoulders, arms and legs. I also get numb arms and legs. senf me an email if you ever want to talk.

  7. #7
    Quote Originally Posted by NCLizD View Post
    Wise...you don't think that all these symptoms have anything to do with syringomyelia and transverse myelitis??? I thought that was what was causing all this....I'm just wondering if this pain ever ends or if this is something I'm stuck with forever. My pain management doctor says yes i will deal with this for life and there is nothing i can do to prevent the syrinx from growing or to help it stop...I have been tested for diabetes and do not have it. Please give me your best shot!
    NCLizD, I am so sorry that I have been travelling and did not see your reply until just now. I think that your syringomyelia is just a manifestation of something else that is cause it to happen. In my opinion, a syrinx is a manifestation of blocked cerebrospinal fluid movement, shunting it into the central canal and enlarging it. It might be from meningitis or other inflammatory conditions that caused adhesions between the meninges and your brain/spinal cord surface, restricting where cerebrospinal fluid can flow.

    Cerebrospinal fluid is made by the choroid plexus in the fourth ventricle. About half of the cerebrospinal fluid flow upward to the brain where it is absorbed by the meninges, the filmy subdural vascular arachnoid membrane that cover the brain and spinal cord. The other half flows down the spinal cord, mostly in the subarachnoid space. Injury, inflammation, infection, and many other causes can lead to syringomyelic cysts.

    I will keep thinking about this.

    Wise.

  8. #8

    thanks

    thank you all for responding. I have now been put on 120 mg slow release morphine each day. I'm not liking this at all...but I have to admit, I feel a little relief. Thank you Doc for thinking about this...means so much!

  9. #9
    NCLizD, I know constant pain is terrible. I'm not sure if I've just gotten used to it because it's 'stabilized' or my threshold has gone up. I hope you can find a solution that gives you relief & allows you to remain productive. Good luck!

  10. #10
    Dr. young,
    I see a pain specialist for my syrinx to treat my pain. WOuld you advise me to see someone else to find out what is causing the syrinx or the blockage in CSF?
    thanks

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