Hello everyone
Long time reader, first time poster, to start with a massive cliché! My name is David, I live in the North East of England in the UK, and I was diagnosed with a spinal dural avf back in June last year.
To start at the beginning - I initially started presenting with mild numbness sensation in the two little toes of my right foot at the start of 2024. This started coming about not long after I’d started using a Wattbike (basically, a smart excercise bike that can be used for Zwift and the likes), so I put it down to incorrect seat/pedal position. As time went on though, the numbness seemed to gradually spread, impacting more of the foot and eventually starting in the other foot. After seeing a doctor, blood tests were ordered showing no abnormalities; an electromyography test followed, with the guy putting it down to ‘99% likely to be a lower back problem’.
In the UK at the moment, our doctors are unable to directly refer patients for MRI scans, so I had to wait months to see a physio, who in turn ordered a lumbar MRI. This was done at the start of 2025, and showed a broad based disc bulge at l5/l6, with nerve root compression and mild cauda equina compression. It was assumed this was the cause of the numbness, and I was given a variety of physio excercises to do. During this time, I was also recovering from a knee replacement relating to historic osteoarthritis issues (story for another forum!), so I took my eyes off the ball a bit.
By the time I picked the physio excercises back up in June last year, I found quite quickly that they seemed to be making my symptoms even worse. I ended up with numbness spreading up to my knees in both legs, and the kicker came when I started getting a weird urinary hesitancy. I went to a and e, fearing cauda equina syndrome; they did a repeat lumbar MRI, which showed no change from the prior one, but just by chance, they happened to notice signal changes further up the spine. After follow up scans, including an angiogram, I was diagnosed with having a spinal dural avf in the thoracic region (T7 to be exact). I stayed in hospital until they operated, with them electing to go down the microsurgery route instead of embolism.
I awoke after the operation feeling 10 times worse. There was a change in sensation in my entire lower half and general muscle weakness, including saddle anaesthesia that wasn’t entirely there before. I managed to mobilise in hospital afterwards, feeling fairly weak but just about able to walk, but it was evident I had issues with urine retention and also started to suffer really bad constipation (which to be fair, I’d had on and off a couple of times in recent years, might well be related). I put this down to reduced mobility, painkillers and several days of nil by mouth though, so it was not a documented issue.
My neurosurgeon was confident I’d make a full recovery, and was seemingly unconcerned about the saddle anaesthesia I was discharged in July and started seeing a physio afterwards to build up strength in my legs and help the spinal recovery. My constipation wasn’t really an issue in the first two weeks after leaving hospital either. However, this came back and hit me like a truck after overeating at a family barbecue- I ended up needing to take several doses of macrogol a day combined with enemas, and haven’t managed to reduce dosage since whilst I await a belated appointment with bowel management specialists (at my follow up neurosurgeon appointment in December, it was evident they weren’t aware it was an issue). To make things worse, since the turn of the new year, these symptoms have worsened, with an almost complete loss of urge to go to the toilet that might be nerve damage, might be due to overuse of suppositories. My own research, in lieu of having a proper pathway, leads me to conclude I have elements of upper motor neurogenic bowel.
In terms of my other symptoms during recovery - urinary hesitancy has improved, but my wider change of sensations in my lower half seem to be all over the place, with me going through phases of apparent improvement followed by phases of it all worsening. I am 99% sure that any sort of excercise leads to the symptoms worsening similar to before surgery, almost as if increased heartrate still produces an impact (it is a vascular issue after all). But my neurosurgeons state this shouldn’t be the case, although my scan 6 months after surgery showed the spinal edema only mildly improving.
So here I am. I know I should feel lucky I am still able to walk, but after all, we frame things by our own experience, and it has really impacted me just how quickly I have gone from fit and healthy to broken body in a relatively short period of time. I am the sort of person who seeks meaning via the route cause of things, and at the moment I feel lost in a sea of cause and effect with the possibility of my own neurosurgeons not knowing enough about the underlying condition and it’s impact on those in my age group (I am only 41 years old). I genuinely don’t know if me trying to excercise is making things worse, or if the initial lumbar nerve issues are contributing towards anything including the bowel problems. The cherry on top of it all is the presence of cervical neck pain the last few weeks, with an old scan showing a disc osteophyte and moderate canal stenosis (further scans recommended but never picked up on). Never rains but it pours!
Apologies for the long post, I really needed to lay this all out somewhere where people would understand. I’m doing all I can to stop what feels like an ongoing spiral and it’s been challenging!
