Cauda Equina caused by herniated disk and further complications.

[Numbum]

Looking for advice or personal experiences from people. Last April, during height of initial Covid panic, I suffered a slipped disc which was not operated on, now I know this has caused Incomplete CES (CESI), (impaired perineal sensation, left side only and some sphincter problems but retains voluntary control of initiating and stopping toileting ). I also have left leg weakness and am undergoing physiotherapy.

Whilst my pain has subsided I have been left with life changing effects and am still being monitored by the consultant, under my request. In a recent telephone appointment he indicated that operation not really an option as a discectomy is performed for pain relief and this was not offered during my time of excruciating agony!

Anyway this is where I need your input. I asked the consultant recently if because of my situation am I at greater risk of developing CES retention (CESR), a paralysed, insensate bladder and increased weakness or paralysis/numbness on a bilateral basis. He said not- but in my head that just doesn't make any sense. I feel one step away from impending doom and as a result I refrain from pushing myself physically towards the pursuits I have enjoyed in the past such as running and strenuous exercises classes.

Would welcome any input and feedback as to IF I am at increased of further life changing effects due to back health during the last 12 months.

Finally, I following latest MRI - Nov 20, I have been told that nerve is not being impacted as much as previous scans had shown. However, recently I have felt increasing presure in the saddle region where I have numbness. Does anyone know if my nerve is beyond feeling pain if it is again being squashed by my disc? Or would the pain return if I was in trouble again??

Thank you in advance for anyone who reaches out to me, any information or experiences welcomed to help me understand my situation and if I should consider an operation in the future (historically I have wanted to avoid an op at all costs... now I'm not so sure).

[psytrancer]

I had slightly different issues due to a severely compressed cauda equina nerve root caused by disintegrated discs & osteoarthritis bone growths bearing down on it. I was having extreme pain all down my right side from buttock to foot, plus some urinary issues. I’d been having steroid injections into the inflamed area around lumbar area twice a year for four years. These helped quite a bit but as time goes on they start to lose they’re efficacy so I went to my GP to ask about surgery. He sent me for a new MRI scan, last one having been four years before, when he received the scan report he phoned me & said “it’s not looking good”!!! I had one vertebrae that had moved out of position, all discs in lumber spine were degenerative & the worst bit was the squashed cauda equina nerve. He very quickly got me seen by a spine surgeon, he showed me the scan pictures & that nerve root was squashed into a crescent moon shape , the not looking very good part! I then had surgery to release the pressure on the nerve, had three discs removed & artificial ones put in & strengthened with titanium plates & bolts. The moment I woke up after surgery all that pain was gone & has stayed gone & my urinary problems were gone too. Two years on & it’s still all good. Point of telling you all this is that I was told that without surgery within another few months I would have paralysis in my right leg & possibly the left one too & that I’d be doubly incontinent. Moral of the story is, don’t avoid having surgery where the cauda equina nerve is involved. Surgery took about three hours, I was back home after four days. If you decide to go for surgery you will need help when you get home as you have to lay flat on your back for two weeks!!

[Emma2017]

Hi I am with psytrancer on this. I had slow onset CE and was told by surgeon if I had left it paralysis was on the list. So had an operation and then another three. Last one was a laminectomy and fusion. Don’t avoid surgery if CE is a possibility as that will or can cause paralysis and toilet issues.

[Twinkle3131]

Welcome to my world! I too have the Incomplete CES. Spinal surgery is not effective for this except for the total bladder cessation which as you know we are warned about. When I lived in Australia I was warned that inability to pee meant getting a helicopter!!! I lived 20 minutes from the hospital! However, the cause is scarring from when the disc fluid escapes into the spinal cord/ canal. Our bodies immune system fights this stuff and we end up with scarring in the Cauda Equina at a level where there is a bunch of nerves. Starts about 6 weeks after the injury.

I have seen my scars on a screen when the specialist injected dye into the spinal canal. I asked what the bunch of grapes were and was told that these were lumps of scar tissue through the nerves. A bit like chewing gum in a pony tail. To keep it short my Spinal surgeon was totally unable to do anything with this though did a brilliant reconstruction of my totally worn out disc. He did say that he prefers people to wait until the disc shrinks o nothing before surgery. Better outcome as I can agree.

The best medication I have found for the numb bum is CBD oil. If you live in NZ Tilray is available. I gradually worked up the dose and to my surprise can sometimes lose70% of the discomfort. Life does become better. My old pain score was 8-10 depending an what was happening. It has dropped significantly. We do get flare ups when stressed or have surgery etc do bear that in mind. Great book available The Adhesive Arachnoiditis Handbook by Forrest Tennant MD is online and great value. He has a free one that is only had minor alterations in the new one. Best guide ever. Of course this is the name for the scarring. Can also be called discitis.

I have to go out for a meeting so will stop. I love the numbum name. I was almost chucked out of a neurosurgeon's rom for saying that was what I had! Language!!!! Anyway it is much easier to talk this so let me know where you live