Recovery from Cauda Equina Syndrome
Posted , 47 users are following.
I wanted to share a story of my boyfriends experience with CES because I had never heard of it until he was diagnosed, I searched for information on how he might recover and read so many traumatic stories I was devasted. I could not find any positive outcomes.
For people who might be newly learning of this condition let me share a beacon of hope when you are likely feeling quite terrified!
My boyfriend had back problems for many years, I think prolapsed discs that eventually healed themselves. Last year he had this condition for much longer than normal, a number of months and the pain got worse and worse. He was getting shooting pains down the backs of his legs. One weekend he said his legs were starting to feel numb and then in the space of 2 days he lost feeling in his feet and calves. He could not feel any sensation as to whether his bladder or bowels were full and he couldn't feel his buttocks at all. His penis also completely lost all feeling.
At this point he went to hospital and fortunately was in a hospital with an excellent neurosurgery unit so they recognised the symptoms immediately. The surgeon operated within hours removing the disc. He was in hospital a couple of days for recovery from surgery but almost immediately the feeling in his bladder and bowels returned.
Once back home he was very, very weak for several weeks, really struggling to walk. He had numb legs for a long time and even now, 8 months later, he still cannot feel the base of one foot. For many weeks after surgery the feeling in his buttocks and penis did not return. As you can imagine we were both very worried this could be a permanent situation. After a few weeks he managed to get an erection and ejaculate even though he couldn't actually feel it. Finally after many weeks the feeling in the saddle area fully returned and all was functioning as normal.
He had a very severe limp even until now and sadly that has resulted in a second prolapsed disc which he will also need surgery for but thankfully the disc is not compressing the nerves that would cause CES and the surgeon is confident he will heal nicely.
So he isn't yet recovered from all the issues related to his back but I think he has almost fully recovered from the specific issues associated with CES and the compression of that specific nerve system.
I hope this gives people some hope that it is possible to recover in some situations.
9 likes, 75 replies
DeeIG Jenn0
Posted
I had a spinal fusion 12 years at L5S1 and then no problems until this year when I had a bulge at L4L5. Severe pain in lower leg and ankle, numbness in foot. I had a decompression, but a dural tear with CSF leak complicated surgery. From the first day I didn't feel quite right. Had no bowel movement, gradually had to strain to urinate. Weakness in both legs, worse on right. At three weeks the disc herniated a second time. Then referred to neurologist and re-admitted, was in urinary retention and no bowel function. Since then there has been minimal improvement of leg strength, continue to self-catheterise and bowel is a nightmare. Just been referred to spinal injury unit. Anyone else had experience of post-operative cauda equina?
michelle_89097 Jenn0
Posted
I'm new to this forum so excuse me for posting in the middle of this conversation! I would like to know if there is anyone out there that contracted CES by being in a motorcycle or other traumatic incident and it was not diagnosed until 5 years later! Can anyone relate???
chris13237 michelle_89097
Posted
unfortunately Michelle I can relate. I broke my L5 vertebrae into pieces and it occasionally caused some compression of the nerve bundle to my lower left leg. I didn't take it seriously and I have no idea how the injury occurred, but I wasn't diagnosed CES until about 8 years later when the disc exploded and caused full compression of the nerve bundle. I am about 8 mos post-op and I have recovered quite a bit of feeling, but suffer from numbness in my left leg from the knee down constantly and it will creep up further occasionally all the way to my waist. I have normal bowel and bladder function. My neurosurgeon suggested as much as a 2-5 yr timetable to fully regain whatever feeling will return, but was hopeful for my prognosis that I would regain a significant amount of feeling back. Whether that's true or not I have no idea, but I try to stay positive and do stretching and workout exercises designed to help. Now it's hurry up and wait which is the most frustrating part for me.
aija47588 Jenn0
Posted
EricOklah Jenn0
Posted
Infact i thank you so much for sharing your boy friend's experience with me. You story has given me hope again because i ost hope and never that things coud wolk again for me. I am having the same symptoms as your boy friend. i was disturbed and never thought that i could get back my bowel and urine as well as my sexual function. But with what you have shared with me tells me that al hope is not lost. I had my surgery just two months ago and i am begining to experience some improvements even though there are numbness in my legs ands buttocks as well as my private part, i am convinced that with what i heard from you all hope is not lost. thank you
kate69552 Jenn0
Posted
Thank you for sharing this, the bottom fell from my world in the last few
weeks and its helped seeing someone is getting through this!
For the past 9 weeks I have suffered with sciatica pain but otherwise well
Constant doc visits for pain and a walk in physio appointment.
I had my 36th birthday on May 1st, my partner and sons 8 &14decided
to go shopping for my wedding shoes ( this is supposed to be on July
22nd) I couldn't get my toes to bend and I was numb, but they dragged me
To lunch regardless. Another shock was realising later that without listening I didn't
Know if I had stopped weeing!
Back to docs next day leaking urine and dragging my leg to be told stronger
Painkillers, keep moving and he'd refer me to pain clinic!
Luckily I called my physio, as after 7 hours in an a&e whirlwind of MRIs
Reflex tests, syringes not one but two anal examinations and a list of
tests and people Who no doubt saved me from paralysis and to who
I am eternally indebted to. I was then told that my compression is the
result of likely cancerous tumour pressing on the spinal cord there are
also tumours down my entire spine, my bones, masses on lung, liver
and lymph nodes just to start, I have had a week of radiotherapy to try
And relieve the cord compression, biopsies, instructions to move, not to
move still no saddle feeling but am relieved to have the "need to go"
Sensation. I have no prognosis yet and am waiting for some clarification.
It's hard to process when really I don't feel ill. I just felt I needed to share
My week my family get so upset and I can't allow myself to be sad so it's
nice to share thoughts without feeling. I wish your partner a speedy recovery!
steves424 Jenn0
Posted
Hey Jenn0, I was just diagnosed 6 days ago wth CEE and operated on in less the 24 hours of onset symptoms. I am curious, if you recall exactly how many weeks until he recovered from numbness, got an erection, and had feeling. I am post Op day 5, and am able to walk without a cane (I try for at least a mile a day) and do almost everything normal, except pee and poop (I suspect due to the numbness) I am really hoping for some more exact lengths of time regarding intimate feeligs. My wife and I want to have a baby in the near Future and your story gives me hope that I will be able to achieve this. I hope you still get these / check back. If anyone else has timelines or tips / strategies for a quicker recovery I would love to hear from you too.
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donal03912 Jenn0
Posted
I'm in a similar situation .im 2 years in since op
kl63196 Jenn0
Posted
I'm very worried now for my 74 year old dad. The doctor is unable to diagnose what happened today but has suspected it could be CES or Spinal Conal Stemosis. He has been in the hospital since this morning around 11am but they can only schedule for MRI tomorrow. Unlike all of you, my dad is not getting immediate attention.
He just wake up this morning feeling numbness on his leg. He can't feel it and can't walk at all now. Very worried.
laura_42543 kl63196
Posted
If a doctor even suspects its CES I would demand an MRI... numbness is a red flag symptom and if it is CES they should operate within 24hours... another red flag is if he has urine rentenrion. Please don't let them fob you off as I was for 5 days :-(
I hope your dad is ok!!
chrioli laura_42543
Posted
keith94082 chrioli
Posted
I agree 24 hours I was left in complete compression for 6 days. Look at the damage ces can cause I have a colostomy a ileal conduit wee stoma. I have got bad mobility other operation all cause by ces indirectly. Bladder remove 2 major hernia operation 1 revision of the colostomy stoma. I have a 1ft long scar up the middle. All through being left when they done a Mir scan 6days in I was whipped out of be by ambulance crew blue lighted to kings hospital. So much nerve damage severed nerves as well. I sued the settle before it went to court. . It was a massive amount of money . But if I had my old life back the could keep it the pain and nerve pain I can't full from my waist to just above my knees i have foot drop in both feet it go's on and on
keith94082 kl63196
Posted
You insist he as a Mir scan that will give them the answer. Bloody hospital again older people they think oh they can wait.
Well he can't he needs his mobility. I have established causa equine. Mine was left 9 years ago I was a very fit 50year old. 6 days they left me sent .e home once even though I had a go letter. Cut it short I can't feel from my waist to the top of my n
Knees I have mobility issues dropped feet I have a colostomy and a ieal conduit wee stoma stoma. I had serve crushed nerves major compression of my spine. I am in terrible pain. I am 59 now my life is so different I sued and won a lot of money they could have it back for my old life back. It's just to show you what may happen keith
andy1021 Jenn0
Posted
Apologies if this is the wrong place to post. I couldn't sleep all night and reading everyone's stories I feel I should share mine.
I'm a 34 year old male, healthy and active with lots of back injuries etc from a playing sports, lifting etc.. my lower back pain was flaring up, to the point where I couldn't bend over. Being that this has happened to me before I wrote it off as stress and it will go away as it has done in the past. Fast forward to me picking up some heavy boxes the pain increased and I started to have shooting pain in my hamstrings with at this point extreme lower back pain. I like many of you went numb, and went into emergency surgery after seeing the MRI. Since I went from emergency room to surgery I didn't really get a chance to know or really was told what CES was... just that I needed to get the disc out of the way asap. I was operated on about 30 hours from first heavy signs of numbness. I googled post Op and the emotions hit.
I am exactly one month removed from surgery today, I have regained use of my bladder, which I felt started with a UTI giving me urgency and from there I just kept going with it and pushing. I am voiding often and hope to keep it that way. I don't get to see the neuro urologist for another 2 weeks, busy doc. My bowel movements are difficult, early on here nothing worked and I had to use multiple enemas. Ive switched my diet to vegetarian and have done everything I am sure you all have been recommended. It has helped not dramatically, but enough to keep the enema away for now. My penis can get erect, not fully I feel and when I ejaculate i can't feel any pleasure from it or really known it's happening. It's weied and I can't wait to move past it.
I have numbness in everything except my quads from the waist below. Since surgery I feel like I've gained about 20% feeling back, I am now walking without my walker but not well but I get around. I have a right foot drop that I'm trying to find a good solution for and my gluts are very numb and weak so my stability isn't the greatest.
I don't want to make this long winded so my apologies . I am typically not the most positive person alive, but I am highly motivated and ambitious. PT has given me a lot of hope, and the small victories like being able to move my toes for the first time take away some of the emotional ups and downs I go through.
The best way I can chalk this up is that this is the hand that was dealt. The small wins are the only way to look at recovery. Lots of PT, exercise, and positivity is the only way I can attack this.
Thank you for sharing your stories, I am thankful for you all and wish you well.
ruxana22 Jenn0
Posted
Hey,
Just came across this group discussion ..
I'm yet another victim of CES. Been over a year and a half since surgery. Unfortunaly it took me 72 hours to get it operated from the onset of symptoms..hence still got saddle anaesthesia, no bladder/ bowel control and a weak back. I know the average time for recovery is two years and that also differs case to case, but just wanted to know if anyone noticed any particular improvement after starting some particular treatment. Some physios tell me that physiotherapy may not really work..and I cud try a electro neuro machine therapy to revive my sensation. IV pretty much given up on non veg simply to ease my digestive system and bowel movement.. but anyone got any better suggestions for regular intake of b12 apart from meat? I tried acupuncture..didn't help me with CES related complications but it helps when I have back pain or discomfort. CES can be rather upsetting but hope we can keep the conversation positive and helpful with tips and stories of recovery.