Cauda Equina Syndrome: Pain, symptoms, management and prognosis

I did forget something. Brain fog, The searing pain in both legs all the way to my feet. Constant foot cramps. and brain fog... I have become someone who says "Sorry" ALL of the time. I'm truly not at all like that person. At least I wasn't

Just had C2-T2 fusion; how long for your recovery period. I am 60

Disc+laminectomy, ablation of the sacral formina. How long did you have symptoms before diagnosis? Hope your feeling better. 😊 my *old pcm still has it in his head that my problem is stenosis and that surgery fixed it. Yes a contributing factor but, the finality of the situation? Severe neuropathy due to long term cauda equina compression. Hey I may shamble with a cane or walker but, I eventually get there.

Skip, I don't see where you tried Buprenorphine for your pain control or medical marijuana (THC/CBD oils). Although I don't have CES I do have long standing chronic pain that I've been able to take control of using Buprenorphine patches and using a higher ration of CBD to THC oil I've been able to stop my use of Oxycodone for breakthrough pain. I know this doesn't help you directly but since no harm has come from using marijuana for pain with its many success stories you might consider it. I found this on line too:

Living With Cauda Equina Syndrome
If permanent damage has occurred, surgery cannot always repair it. Your cauda equina syndrome is chronic. You will need to learn ways to adapt to changes in your body's functioning. You'll find that both physical and emotional support is essential.

Try to involve your family in your care. Many professionals can also provide you support. Depending on your limitations, you can seek help from:

An occupational or physical therapist
A social worker
A continence advisor and continence physiotherapists
A sex therapist

Hi Everyone, I was directed to this site today by John, a consultant with the Mayo Clinic. I have done my own research on Cauda Equina Syndrome. I just left a for profit HMO where I couldn’t get any attention to my spinal chord injuries from MVA in 2017. I have herniated, fractured, blown out stuff in every area of my spine. If I don’t hold my head in a certain position, I can’t breathe. I have bilateral carpal tunnel so I can’t hang on to anything. From day one post accident, I had difficulty urinating. I told anyone wearing a lab coat that I couldn’t urinate. Then I started feeling like I was sitting on a medium sized russet potato. Although my vaginal area and rectal area felt like they had been shot up with novocaine, the lump sensation was sending shots of pain down the back of my legs. I also had these shock like symptoms like you see when someone is getting defibrillator shocks to start their heart. They would raise my legs off the surface violently. For the icing on the cake, neuropathy 24/7. The only treatment I got for that was one cortisone shot in my right femeral nerve. I couldn’t get the other leg or the sciatic nerves done at the same time. I thought it was rather useless

@msmunro I wanted to let you know that John @johnbishop isn't a consultant with Mayo Clinic. He is a Mentor like me, and we are volunteers with patient experience. While we are experienced with our own medical care and that of family members, we are not medical professionals.

The symptoms you are mentioning here can be from spinal cord injury or spinal cord compression. I did have spinal cord compression and was generating an electric shock down my entire body when I bent my neck. Difficulty urinating can be from spinal cord compression and it can progress to incontinence that can become permanent. That can be from compression in your neck. Difficulty using your arms and your grip can also be spinal cord related or related to the nerves exiting the spine that go to the arms. You may have that in addition to carpal tunnel. I had this too from spinal cord compression in my neck, carpal tunnel and thoracic outlet syndrome affecting my arms.

I am concerned about your comment about difficulty breathing unless you hold your head in a certain position. This is significant enough to warrant an emergency room visit, and at the very least, make a call to the spine surgeon you are waiting to see and let them know about the breathing issue. They may have some emergency patient appointment slots held in reserve or perhaps they will send you for imaging right away. The Phrenic nerve exits the spinal cord around C3 and travels downward to the lungs to assist with breathing. If you are having a spine problem that is restricting this nerve, it can cause problems.

I know you have a lot going on now. With mentioning the HMO insurance that you previously had, it seems that they didn't provide diagnosis and care that you should have had based on how advanced your symptoms are. Since you've mentioned some imaging reports, they must have had some knowledge of your condition if that was done under the HMO policy. Perhaps you were misdiagnosed? You may have a case against them if you asked for care and were not given medical care for your condition, and you are now worse because of it. You may want to get copies of imaging and reports as you go in case you need that to seek secondary opinions about your case. It seems pretty urgent to me, and I hope your consult will bring some hope for a recovery.

Take care. Will you make the call to your specialist about your breathing?

I have adhesive arachnoiditis. Same issue, nerve adhesions and scarring. Causes horrible pain, loss of leg control, weakness, bowel/bladder, etc. Check out Arachnoiditishope.com

My advice to you is to find a medical center that has experience with really complicated back problems . You really have to be your own advocate ! You know you need different care and that something is wrong , so get away from this surgeon . Do some research online and find a surgeon who has experience dealing with this . I look forward to hearing your experience . Good luck and God bless you.

Hi,
Middle of night here. 5 months ago, I had the correct surgery for cauda equina symtoms
L4-5 disc herniation, laminectomy, decompression, spacer, fusion. Right now having the same symtoms, pain with peeing, pain rectally ...usually have to use a biscodyl suppository to iniate poop. The pain is so bad ...it is unexplainable. I went to a clinic to get this done, thought it was good, cause for 5 years the pain was insane but no one would listen to me. Right now they aren't
listening, limiting the amount of pain medication treat me like a criminal looking for drugs. Until last year August was never on pain meds. Just kept getting worse...till I found this Clinic, the Nuerosurgeon I thought understood ...but now not listening...surgery turned out great. The pain and bladder & bowel, legs, feet are all still the same, if not seemingly worse. The problem I have is no one understands this problem and how bad the pain is. I've tried going everywhere, 3 medical universities, 10 colorectal surgeons, 2 urogynecologists...I thought finally I found the answer, as it seemed like he knew, but now seems like he could care less. Yesterday, had an EMG done by the supposed pain management Doctor...he was worse , not listening taking the flexeril away ...I'm rather stuck between a hard rock & reality. Who or where in my area of Southern California does
understand and will listen. Not even enough meds to get me through the month. Today I'm going back to one NP who knew and knows what's going on here. Guess I just answered what I was asking, lol. She is also only allowed so much she can prescribe ...but now 5 months post surgery I'm sure she will understand. She also referred me to a good Radiologist Interventionist, he does epidurals, probably my next step. So I hope this made sense, & if anyone out there knows , seen,
have done, has someone who understands please text ...this is totally horrid and my poor family is suffering too. TIA & God Bless you, hope no one ever goes through this!! Thank you 4 reading.

@olivedog i am so sorry you are going through this. You may want to reach out to a group called the doctor patientforum,com and see if they may be able to help you find a pain doctor. I know it will be a tough battle but please don’t give up hope!!