Cauda equina after disc bulge

[Imthedoctor]

Hi

Any sciatica sufferers with bulging discs go on to get cauda equina syndrome.... what happened?

[Jtal19305]

yes, I had this situation. Disc bulge at T12-L1, compromising the conus area. Had to have decompression surgery to remove laminae at that level with fusion of those two vertabrae with hardware. After surgery I developed nerve pain in my left foot, and get nerve pain in my lower legs which comes and goes. I have been in pain management ever since the surgery in June 2015. Not sure if I could have lived without the surgery because I was getting symptoms such as leg weakness and saddle pain prior to the surgery. My symptoms came on quickly before the surgery as I was fine up until a week prior to surgery which was essentially emergency surgery. This is not an easy operation to do as a surgeon and to endure as a patient. Anytime a surgeon operates in the region of the spinal cord, it is veyr dangerous. That is why most surgeons stay below L1, and many Ortho surgeons and some neurosurgeons would not take my case because they do not want to operate above L1. However, there are many good surgeons that will and apparently my surgeon was able to take on my case even though I do not believe he had a lot of experience at that level. I recommend selecting the best surgeon possible, and someone who has good reviews and no major issues. Do your research. I can make some recommendations for surgeons in the USA and you should contact me for more specific information. The bottome line is that this syndrome needs to be addressed before it gets worse because a person can become paralyzed, have bowel and bladder issues and other problems if the disc bulge with stenosis compromises the spinal cord. My cord at that level was very tight and although I was living with this for years without major symptoms, any little accident, fall or further bulging over time could have made my situation much worse. I suppose I treated it but I am dealing with a chronic pain condition that can be managed with medication and lifestyle changes(i lost a lot of extra weight to take the pressure off my back, I do not drink alcohol due to the meds and other changes). I have my full strength so the nerve problems relate to the sensory areas. I am told anytime the nerves/cord are exposed to trauma (due to surgery, etc.), there is a possibility of chronic changes to the pain signalling in the nervous system. In other words, the wiring is affected which in turn affects the signal (ions) travelling through the wires which can result in pain signals being sent for no reason. Some doctors believe "resetting" the nervous system can fix this, and this is a whole different topic for a different time and includes areas such as neuroplaticity. There is so much to be aware and my final words are do your research and make sure you are doing the right thing because surgery should always be avoided if at all possible because there is always some risk of complications. Many people I know who undergo surgery are fine afterwards but I know several people personally, and I have read about many others, that have more problems after surgery. I still have hope that I am getting better and my pain which was through the roof after surgery has gotten better over the years but it is still present and requires pain management which is a "pain" because you have to go to the doctor's every month and take meds that have side effects, etc. I hope this helps. Let me know if you need any additional information.

Cheers

JT

[Imthedoctor in reply to Jtal19305]

Thanks so much for your very detailed response, luckily I've been checked at the hospital and they've ruled out cauda equina, but I've been told to keep an eye out for new symptoms. I've got an appointment at the pain clinic in two weeks plus physiotherapy this week, just hope it all goes well and I can start getting my life back.

[Synchronicity in reply to Jtal19305]

Yikes! I was just diagnosed with cauda equina syndrome. I have an old herniated disc at L5-S1, impinging on the S1 nerve root that is the worst. I also have 2 other discs bulging above, touching the cord. I believe L2-L3 and L4-L5, not certain without looking at the report again.

I started out with numbness in the genital area and low drive, and dismissed it as typical hormone changes of a woman in her 40s. I have had bladder retention, chronic constipation and loss of knee jerk reflexes for about 4 months, weak ankles and one weak hip for about 3 months. No severe back pain or nerve pain, some tingling, weakness and muscle tightness in my legs now and then. My primary suggested CES when I went in with my history and bladder complaints and after she tested my reflexes. She ordered an MRI that my crappy insurance declined. She told me if my symptoms suddenly worsened to go to the ER and she gave me a urology referral. After the leg symptons started she referred me to neurology. I waited until January, when I was able to change insurances and saw the neurological, who also ordered the MRI of my lumbar spine, as well as of my brain due to other symptoms that suggested MS. The MRI was yesterday and today I received the report with the CES diagnosis.

Everything I read says it is an emergency and requires surgery within 24 hours of symptom onset. Yet I did not see a doctor until 3 days after, as I suspected it was a UTI at first and was trying to find an urgent clinic that took my crap insurance. Then when my doctor ordered ther right test, my crap insurance delayed me again. Nearly 4 months later, my new insurance agreed to pay and here I am now, 4 months into this condition... that I know of. The genital numbness was starting as early as April, when my hormones were tested. I am disgusted by our healthcare system. Not to mention no one, in all the years I mentioned my disc herniation to doctors, ever told me to watch out for these symptoms later on.

So now what? Am I doomed to permanent reliance on catheters and laxatives? Am I risking paralysis by waiting for my follow up appointment next month? I work in healthcare and the constant need to go to the bathroom is already interfering in my job, and my hobbies include figure skating and ice hockey. So now I am afraid to do those, in case I might fall and make this worse than it already is!

Ugh!

[Imthedoctor in reply to Synchronicity]

So sorry to hear of all your problems, hope you finally get the help you need. Luckily I was told to keep an eye out for the symptoms, so I looked it up online too. Thankfully it was ruled out and I'm now waiting for an epidural steroid injection in March after which I might get my life back🤞

[Barbola]

Oh, dont worry, its very rare! You had ur MRI I guess ....just read ur post from a while ago. Too many unnecessary operations people think its easy way out. I see more people at phys therapy who are now worse off bc scar tissue forms after a while in many cases.....especially on the lumbar spine. Too much checking on the internet not good for the mind!