krm123

Thanks for your excellent and detailed response, it is very much appreciated.

I feel like my life is a giant jigsaw puzzle right now and I’m trying to pull the pieces together. However I don’t know if all the pieces are part of the same puzzle, or if I’m dealing with two separate puzzles.

With regards to a difference in the spinal cord diameter on the two images, is there particular disease/illness that can causes this? I’ve done a bit of research and while I have read about cord swelling, it seems less uniform when it occurs in those cases and more particular areas of swelling along the cord. My images look quite uniform, which makes me wonder if it is just MRI machine differences on the settings, slice setting etc.

I have a few questions which may/or may not be relevant to my recent issues. I feel they are all connected, as I have been a healthy individual up until the nerve pain started last year. Then the leak was only a few months later.
– My 1st neurosurgeon didn’t think I can get a leak as I had no trauma (Which turned out to not be true).
– my neurologist thinks the nerve pain/leak could be connected by nerve compression of cranial nerves due to brain sag.
– my new neurosurgeon (Who is probably the closest we have to a CSF leak specialist in Australia) thinks it is a coincidence and separate issues.

My neck since leaking seems to catch when I move my head up/down or to side. Sometimes it will catch multiple times in a row. My neck has been chronically tight and sore since my leak began, so unsure if the catching is due to tight muscles, or some kind of instability back there but it sure feels like a bone catching. I had no previous history of neck issues pre-leak. I know neck pain is a classic CSF leak symptom.

If I push on my spinous process around C5/C6 at beck of neck I feel a bone move in and pop. Unsure if this is actually a bone moving or if it is a tendon/muscle, but when I push the end point of the process it feel like the spinous process moving in.

When originally investigating the nerve pain in leg/buttock, My 1st neurosurgeon sent me for diagnostic SI joint injections on both sides as he was unsure what could be causing nerve pain, then asked me to take a pain diary post injections. After the injection it went numb for maybe 1 day due to the anaesthetic injection done right before the steroid injection. Once the anaesthetic wore off the next day it was business as usual and the steroid injection didn’t seem to do much and the pain in sciatic nerve came back the next day. My gut feeling is that SI joint is not involved but Neurosurgeon told me to try physio. I’ve just started physio couple of weeks ago and the physio thinks my SI joint is not as mobile on left side, and has given me exercises. I have read that nerves in that area can be affected or irritated by SI joints, but I don’t have any pain from the SI joint. My nerve pain seems to be in the buttock middle/outside around area of the piriformis. I have read piriformis tightness can cause nerve issues. My Physio does not believe in piriformis syndrome though.

Another thing to note is that my greater trochanter noticeably sticks out more on my left when standing up, which is my side of nerve pain and sensitivity on buttocks. If I sit on a chair, and put my feet flat, then use a spirit box level across my knees, It is not balanced and I can see my left leg appears longer from the knee downwards, if I lift my right leg at the heel while sitting the spirit level balances. If I stand up and lift my right leg at heels a little, my left greater trochanter seems to move inwards and become more balanced with the right greater trochanter. I know leg length discrepancies are quite common in the general population but wonder if this could be related to nerve pain, muscle imbalances. People have noted in the past that I have a slightly twisty walk, my hips kind of swing/twist quite a lot with each step. My fleet are also very flat, and I started to wear shop bought orthotic inserts last year due to pronation as I had bad wear pattern on my shoes at the edges. After wearing the orthotics, the wear pattern seemed to improve. I wonder if custom made orthotics could address both the flat feet, and leg length discrepancy and pull the greater trochanter back in on left? I have also read hip abductor exercise can help with these issues.

Back to the leak/neck issues I have read one paper where a few individuals had funicular pain from the neck that presented as sciatic like symptoms in leg/buttock. At the moment I’m struggling to understand what is causing my issues and if there are connections between leak , twitching muscles and nerve pain in leg.