I got Tethered cord syndrome as a complication of developing an Spinal arterio-venous dural fistula because the Eminent surgeon at Addenbrookes went in far too high. The fistula was located in the S3/S4 region, but he operated at L3.
Post-op op I developed leg tightness in my right thigh, which has now spread throughout my lower limbs and buttocks, together with rectal pain. It took 9 months to get another MRI, which suggested a fatty filum was stretching my cord, and I had a further op under the same eminent surgeon who did not divide the filum but found tethering at L5/S1 instead, which he dealt with. It's a chicken & egg situation about which tether occurred first as the L5/S1 one could be related to the dilation of the arterialised vein, which was flooding my spinal cord with blood and damaging it. Anyway, I only got brief relief post-op op and the symptoms returned overnight (I assume due to the undivided fatty filum picking up the tethering.) Surgeon's response to me reporting that was "I've done my bit, see your Neurologist!"
I'm also in complete urinary retention and had to have a colostomy in 2018 for a neurogenic bowel.
This all started in 2011, and it took 2 1/2 years to diagnose as the triage nurse refused a Lumbar MRI when my GP referred me to Orthopaedics because she thought it was neurological and that a Lumbar MRI would "Cost" and they wouldn't see anything! This was despite my symptoms did match the MRI appearances.
More struggling to get listened to and finally diagnosed with the fistula in May 2014. 1st op 1st September 2014, 2nd Op 3rd August 2015.
The surgeon discharged me by letter in January 2016 as they couldn't see any cause for my issues. Strangely, he works in Addenbrookes with the Neuroradiologist who found the fatty filum. Ever since the 1st op I have had this tightness in my lower muscles which the local Neurologist said was a "sensation" yet I was having problems mobilising even then, as well as getting rectal pain which was thought to be down to piles and led to a fruitless search for a rectal fistula. In 2020, I managed to get a ring-fenced bed at Stanmore's Spinal Rehab clinic for two weeks where they managed to get me walking with a stick briefly. Still having rectal pain then, and while I was at Stanmore, I had a Rectal Bleed from the stump, which became a regular occurrence together with bowel mucus. This has recurred ever since but is now mainly mucus, and the tightness worsens after each discharge.
In December 2021 I had yet another MRI, which showed a remnant of the fatty filum was present with a thin lipoma at S1 and a diastatomyelia seen at L3 which was first noticed in 2014.. A Further MRI in October 23 elicited the same response but I had another MRI last May which noted the same yet added that the Neuroradiologist thought my Cauda Equina was adherent to the thecal sac at S2. This had apparently been noted in 2021 but not reported in the Consultant's letter.
Since that MRI my symptoms have changed in that my muscle tightness has become the predominant issue with no pain and is progressing to the point I have only tightness and severe mobility issues. My toes are hypersensitive and the tightness is wrapping itself round my feet, calves and upper muscles. My buttocks are rock solid and I feel the skin of my soles and the area around my buttocks are super taut.
As both the local Neurologist and Pain Clinic can't seem to do anything they discharged me. I am under Stanmore's Care yet I have been trying to draw this issue to their attention since last August September and getting emergency appointments last September for Christmas Eve.
The symptoms have been getting worse since then. Feel my leg muscles are constantly contracting and I've got to the point where I don't think I'll be able to walk using a frame or crutches much longer yet Stanmore won't see me til 13 May.
I'm at a loss at what to do. I'm waiting for an opinion on the latest scans from the Neuroradiologist but my symptoms are progressing much faster than before.
Any suggestions?
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