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Syringomyelia

Mmiller21495MMmiller21495 Posts: 2
edited 07/13/2015 - 12:56 AM in New Member Introductions
Hi, back in November 2012 I started having trouble with my back, slight pain and walking was causing slight pain and I was becoming tired more easily. Finally decided to call a Rheumatologist. My appointment wasn't until May but he did an xray of every part of my body except my back, feet and hips because I had no complaints at that time. Found out I had osteoarthritis in all those joints. But by this appointment my pain was becoming increasingly more painful. He also said I had fibromyalgia but didn't want to diagnose it because he wasn't going to treat it. My primary then referred me to pain management as Vicodin wasn't helping anymore. He decided to do a cervical MRI. At b that time he found multiple bulging discs, and I was told I had a syrinx that went from C1-T1. Scheduled to see a neurosurgeon and he found c6/7 to be bulging really bad and scheduled me for surgery. During surgery they discover c6 was crushed and 7 was close. Now I have titanium plates that are fused there. I actually forgot about the syrinx because I was distracted with the surgery. Over time I just kept getting worse. Pain management dr was wonderful and kept.helping the best he could with different meds and at this time I was on morphine er 30mg 2 times a day and oxycodone 4 times a day 15mg. Meds still not helping with the pain, especially when we were going to have a storm (gotta love barometric pressure). Anyways, odered 2 more mri's this time with contrast and of the thoracic. Results were the syrinx has grown from C1-T1 to C1-T4, spine is full of osteoarthritis, scoliosis of thoracic, cervical spinal stenosis, cervical radiculopathy (sp). All discs bulging except T7 and T11 with moderate narrowing. I was referred to a specialist Neurisurgeon for the syrinx (very rare and even neurologist don't know about it and the ones that do don't understand.it and won't touch me). I seen him last week. This was a joke!!! He contradicted every study out there from Hospitals around the world that do nothing but research syrinx. So here I am at a stand still again. Such a long intro and I do apologize for it. Just wondering if anyone else has any more suggestions. I'm seeing my pain doctor on Wednesday and I'm going to ask him to take me off the morphine er as I don't think it's doing much of anything. He increased me from 15mg to the 30mg about 4 months ago. I've been on the same dosage of oxycodone for almost 18 months. I do not work, had to resign from my job Feb. 2014 and applied for disability October 2013. I cannot stand no longer than 10 minutes without severe pain in my legs, feet and back. I now am.having problems with my bladder. I don't have any urge to go but it will just run down my legs. I'm having trouble swallowing and just recently started passing out, but only when I was eating.
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  • LizLiz Posts: 7,904
    edited 07/13/2015 - 12:57 AM
    Please take the time to read this post and refer to it when you have questions

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    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Betty65BBetty65 FloridaPosts: 83
    So sorry you are in such pain and have been through SO much! And from what I've read on the site, if you are having bladder issues like you are you should go to the doctor. Personally, I would go to the ER, but that's a call you would have to make.

    Please let us know how you are doing.

    Take care,
    Betty
    Betty65
  • Hi. I'm so sorry. To be honest I had to google your condition as I'd never heard of it! I went to a famous clinics web site & they explained it very clearly. Your bladder issues are very concerning. I don't understand why a board certified neuro spine surgeon won't deal with this! I have a spine full of cysts. I won't go into my insurance issues that are hindering my care & treatment. Are you in the position to find another surgeon? This seems crazy! What exactly did the last guy say? What were his reasons for not operating as an emergency? Did you have the bladder failure at the time or is that a new symptom? All I know is that is a red flag symptom & you should be seen URGENTLY by a surgeon? What did he say about that?

    I'm sorry! I just don't understand this surgeons call not to treat you!

    When it comes to narcotic meds there are many to try. For some reason some work better for me than others. There is a test your pain management doc can do to see how well you metabolise different meds (you can search that here or on the web). I'd agree, if the morphine isn't working after a dose adjustment I'd try something else. I alternate between different ER meds rather than increasing doses any further & that works for me. Have you tried any others? What nerve & muscle relaxant meds have you tried? Switching them up might help but really I think you need good surgical advise!

    I'd phone your PM tomorrow & make him aware of your bladder issues if he doesn't know already. Let him have a head-start on finding a surgeon for you.

    I'm so sorry that you're suffering like this. Please let us know what's happening! I'm sorry I couldn't be of much help. Feel free to vent...I can listen. ;-)
    Osteoarthritis & DDD.
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