@badapple
Are you referring to the Lidocaine patches? I did also had 50mcg fentanyl patch for about 13 years and that did help with the pain that I have in the T10-T12 area and down to the lower back. It also helped a little bit with the muscle spasms and sciatica.I still had plenty of pain but it did help and it was the only constant pain relief I had. I didn't have terrible cauda equina until June of 2018. When it wasn't just the sciatica anymore then the fentanyl no longer worked. They weaned me off that and replaced it with the oxytocin troches & ketamine troches.

I hear you on the options in a rural area. We have just a couple choices within a 30 mile radius. We pretty much have to travel an hour away for most doctor appts. If you go back to the same pain management doctor and he wants to repeat the same injections you can tell him you don't want to. Do you remember if they did a sacral nerve block or an epidural? I understand the frustration of being in pain management. I was with the same place for 10 years and all they wanted to do is repeat the same injections even though they never worked. I found out that it's really just a matter of making you a profitable patient. When I refused to do more procedures the doctor got rid of me. Soooo frustrating!!!

@badapple and @qball2019 have you seen the following discussion? I think it may offer some alternative treatments for your pain.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Thank you John.

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

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.