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Dec 09, 2015 4:58 PM

I would like to connect with other people with the diagnosis of Cauda Equina syndrome. Mine is chronic and progressive. I just found the name for what is wrong and now I know I am not crazy. It is a blessing to finally know that I am not alone however I would love to meet someone online that I can talk with about this.

Dec 09, 2015 5:18 PM

Jean, i have Tarlov cysts and I have the same symptoms. Have you had a MRI of the coccyx and the sacral part of the spine. Now, be forewarned that 99%of doctors and radiologists think these cysts are nothing. The symptoms are stinging, tingling, burning from your hips down, and at random times. You will have bladder and or bowel problems, even the gentiles will have weird sensations. You will get unable to sit comfortably, much less drive. I recommend you have a MRI.

Dec 09, 2015 6:25 PM

I have had MRI. I had an infection in 2000 that was ignore by ER drs and it went on for almost a yr. The infection got into my vertebra. One night a young resident saw me and he said I needed emergency surgery or I would die. The infection pocket was the size of 2 basketballs. The went in and washed out the infection and removed half of 2 vertebra and part of a third. I was paralysed for 2 yrs because of this. I was in a nursing home and on IV antibiotics 45 days of the 2 yrs. They said I'd never walk again but a nice dr. Gave me pain meds so I could try to wALK. After another yr I learned to walk. Unfortunately she died getting a dr to give pain meds has been a war. My dr. now has me on Fentynal patch but it is a strong drug that does not block the damaged nerves and spinal cord damage. Tomorrow I will talk with him and see what we can do. It took me 10 yrs to get my hospital records so having a medical dr give me pain meds was not happening. When my dr died her nurse told me I had to go to apin clinic but the only one in Memphis that took medicaid art the time had a yr long waiting list. She told me to go to methadone clinic and I'd get meds so I could stand to live. This was 2 fold because it helped the pain but I have to prove I am not an addict for going there. I really had no choice because when I have no meds the pain makes me pray to God to take my life. It is so bad that I don't care how I get relief I just must have relief. I have been treated like a nut and told I was a hypochondriac by other drs so it is hard for mew to talk to my dr. He is great but I get so afraid he will just take away what I have til I go too long without saying anything. I see him tomorrow and I am so scared now I dont know what to do. Last month I just took the prescription and left. I am praying for courage and the correct word to say tomorrow. I gave him my hospital records 2 months ago. there are over 600 pages and the dr is dead and the nursing home closed down but those records are enough. I have a severe case and it progresses however there are zero xrays of before available.

Dec 09, 2015 6:57 PM

Just ask his opinion and ask him for printouts of what you discuss , ask if you have concerns after the appointment if you can email him. Then ask if he has any one that he might refer you to so they can work in tandem, Or if he is unavailable for you to contact. Has he made a formal diagnosis? I have found that most doctors avoid this.

Mar 31, 2016 2:02 PM

I was rushed to a large hospital via helicopter for emergency surgery. Over Halloween 2015 I became unable to walk. Experienced bowel and bladder retention. I was immediately rushed into surgery. I had rupture disc at L4/L5. I had a torn sac of spinal fluid. Luckily I was caught in time and diagnosed with CES immediately. Since my issues have progressed. I have to self cath daily. I have constant and chronic pain. I am not able to work even trips to the store require much planning. I began spine injections yesterday epidural spine injections. I will be having a spine fusion this summer

Mar 31, 2016 2:25 PM

LisaRenea73, bless your heart. It sounds like you, and everyone above, has been through a very traumatic health crisis. Hugs & prayers you will continue to improve with treatment, and extra strength to fight through. 🙂💕🙏🌼

Mar 31, 2016 11:07 PM

I hope they fully discuss the ramificationsof the spinal injections, just know if you have any tarlov cysts then the injections will only make them worse. Please ask if any cysts are on your mri.

Mar 31, 2016 11:40 PM

I don't have CES but I am quadriplegic,bladder and bowel both have to be managed, I have a suprapubic catch and we use electric stimulation and suppositories and often manual methods. Not the best thing in the world to have people do that for me but it has to be done right?! Hopefully surgery can help with your symptoms ...😊

Apr 02, 2016 5:34 PM

Zetarlov I haven't been given a formal dx, I've just been told that my severe & chronic pain is from scar tissue from a previous spinal fusion surgery of L4& L5 back in 2001 and that I have some bulging disk etc.... However when they did that last MRI they did find cyst but said they were on my kidneys. They did a ultra sound and said they thought they were just cyst and no need to mess with them. About every few weeks and sometime as I go as long as 1 mo I get this tingling & severe burning pain that is in my genital area by butt and the insides of both legs. I can't even wear pants during the bad days. I have not lost control of bladder or bowels but I do have frequented urge to urinate a lot and then sometimes when I get the urge to go I have to go then can't hold it long. I can't stand or walk for even 5 min on bad days. I have been on almost every pain med there is... Oxy, morphine, those pain patches, etc currently I take methadone and it's worked better then any others. I had @ 10 good years after my fusion surgery before this started and it's so frustrating!

Apr 21, 2016 10:33 PM

Tbart, sorry I haven't been on here lately. But just a thought. I also have the tingling, bee stings in my buttock and gentility. It is a common symptom on Tarlov cysts that are in th sacral area of the spine. It can also mimic scaritic nerve issues.

Apr 26, 2016 1:54 AM

Zetarlov I am so sorry to hear that you have been doing poorly. I have been off for a couple of days myself due to an issue I've been having with my neck and I can bearly hold the phone to type let alone sit at my laptop or use the tablet. The community has grown in such leaps and bounds that it is very hard to keep up with all the posts and with all the Newbies joining the family. I'm glad, however, to see that you are back with is and that basically you're ok (aside from the situation with your pain that you're having). Sending you best wishes, lots of love, {{{Hugs}}} and prayers that you get some relief to the pain that you're suffering. 💕🙏🏻🌻😊

Jan 03, 2017 6:59 PM

Since my parachute didn't open I have cauda equina syndrome, spend a year in a spinal cord clinic. Last ten years pain and weakness worsened and I was diagnosed with lumbosacral adhesive arachnoiditis and also central pain syndrome at T4 from a vasuclar injury that most likely already happened during the accident.

Jan 03, 2017 7:17 PM

Am so sorry KaatjeGotcha. I hope you are able to find some relief.

While I don't share your diagnosis all of us here can understand living with Chronic Pain.

I don't think we have met yet. If you are new let me welcome you to the group. If you aren't new - please accept my apologies. I got that Fibro Fog thing going on here.

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