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New Member, Congenital Stenosis

ldm314lldm314 Posts: 45
edited 11/04/2015 - 11:20 AM in New Member Introductions
Hopefully I'm doing this right here for my first(ish) post. I've been dealing with back issues for as long as I can remember. Going through my medical records recently I have found records back until I was 13! In the last couple of years things really have come to a head which has brought me here.

Last year my back issues got worse. To the point I could hardly walk anymore. I was in pain all day, limped significantly and any yardwork or lifting would make me exhausted and in pain quickly. After 20 years of back pain I finally had my first lumbar MRI. I was diagnosed with Congential Stenosis, having an average AP diameter of 10mm throughout my lumbar spine with 9mm at L3-L4. You can see my most recent lumbar MRI here: https://imgur.com/610ipHW.jpg

I was having significant hip and thigh pain, and because the stenosis was present at all levels my doctor felt that surgery would be of limited help at the time. At that point we agreed that epidural steroid injections would be the next thing to try as over the years of back pain I had tried everything else. The first two injections went well, I had a slight systemic reaction on the second. The injections relieved my pain and got be back outside again. I was able to even chop wood for the winter myself this year. After the third injection, it relieved my pain still but I also had a much more severe reaction. A week later I briefly had a very high fever, followed by nausea, vomiting, gas, abdominal cramps and more. This was 6 months ago.

My nausea increased and I have had every single test come up negative. My appetite dropped, and any time I would eat I would become full quickly and be gassy and bloated the rest of the day. Over 5 months every test came back negative. I also am a survivor of a rare childhood cancer, and went through a round of testing to rule that out as well. I was in limbo between doctors visits until last month my health started declining rapidly.

One morning I stood up, stretched, and coughed. It resulted in a sharp pain in my back and I was on the floor. I figured this was another episode of pain starting, but it had been by far the worst at the time. Over a week my symptoms increased. My limping came back, started having intermittent saddle numbness, as well as bed wetting and various odd sensations in my feet. It felt like my shoes were soaked, even though they were bone dry. I called my doctor and he quickly ordered another lumbar MRI. This one showed minimal change, other than a L5/S1 herniation pressing on the traversing S1 nerve root. This only explained some of my symptoms but we scheduled another injection for that level due to the amount of pain I was in.

That night I was laid back in my recliner in pain already. I had a coughing fit that after about 10 seconds led to severe escalating pain in my back to the point that I blacked out. Afterwards I could not get up from my chair. Any attempts to move my legs resulted in uncontrollable spasms. My girlfriend pushed my recliner up and pulled me to my feet and my symptoms started diminishing immediately. I went to the ER, they reviewed the MRI I had earlier that day, gave me painkillers and sent me home.

At that point (and currently) I was now confined to bed. Any walking past 10 minutes caused significant symptoms. Every day my symptoms have escalated. I can't eat food anymore and have lost 15 pounds in the last 2 weeks. My spinal injections went on Monday uneventfully. I was having significant pain in my right leg the day before and the day of so we agreed that an injection there would be helpful as well so I had the left and right L5/S1 injection.

Before the injection it was also noted that my reflexes were slightly hyperactive. My doctor did the Babinski test and Hoffman test several times on my left side as they both were irregular. I am scheduled for a MRI today of my Thoracic and Cervical spine to rule out any cord compression and see where we go from here. Thankfully I am near two of the best spinal centers in the US, and both happen to be covered by my insurance. After I get back from my MRI I am going to be scheduling a consult with a spinal neurosurgeon at each of these to get their thoughts as well.

All questions and answers are given from a personal perspective only. I have congenital stenosis from C4-C7, and T7-S1. I am actively being seen my by doctor and following his advice. I strongly suggest that you do the same.


  • And the MRI results are in, looks like finally something pointing to the cause my health issues over the last year. My stenosis issues continue to my cervical spine. Here were the radiologists findings. Now waiting for my doctor to review and seeing where to go from here:

    C3-4: Small bulge/spur. Subtle flattening of the thecal sac without canal
    stenosis. Mild bilateral foraminal narrowing due to uncinate spurs.

    C4-5: Small bulge/spur. Flattening of the thecal sac without cord deformity. AP
    sac approximately 10 mm. Moderate left and mild right foraminal narrowing due to
    uncinate spurs.

    C5-6: Moderate bulge/spur. Flattening of the thecal sac and cord with focal CSF
    effacement. AP thecal sac approximately 8 mm. Moderate bilateral foraminal

    C6-7: Moderate bulge/spur, slightly eccentric to the left. Flattening of the
    thecal sac and cord. AP sac approximately 9-10 mm. Mild-to-moderate bilateral
    foraminal narrowing.

    All questions and answers are given from a personal perspective only. I have congenital stenosis from C4-C7, and T7-S1. I am actively being seen my by doctor and following his advice. I strongly suggest that you do the same.
  • SavageSavage United StatesPosts: 5,427
    edited 11/05/2015 - 2:43 AM
    Welcome to Spine-Health
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    Spine-Health Moderator
    Please read my medical history at: Medical History

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