Recovery from Cauda Equina Syndrome

Brain and nerves
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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.

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Thank you jenn0 xx

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He was operated on in time thank god 48 hours u get a good result. I am glad he is ok.

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Thank you so much for posting this! I have gone through a very similar situation with my husband. I, too, knew nothing of this until it happened to us. Oh, the horror stories I have read as I researched about prognoses. Yours is the one positive that I've come across. My husband had surgery March of this year. He had emergency surgery within 24 hrs of onset of symptoms. We are 4 months into recovery. He still has saddle anesthesia, but he's able to walk now with a cane, on level, familiar ground without it. He's wobbly thanks to continued numbness in his feet and toes but I'll take that. There's no sensation in his penis which has him seriously worried. How long did it take for your boyfriend to get this back? Again, I thank your for the beacon of hope.

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I had emergency surgery on 7/27 because I couldn't control my bladder aND was numb inthe saddle area ofor my body. I had been having pain for almost 2 years and was told it was sciatica. I have been using a catheter because I still have not regained any feeling. I walk using a walker. I know that the damage to my nerve was severe so I don't expect the feelings to come back any time soon . I just feel myself falling in to a depression because I feel so helpless

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I had surgery May of 2015 to have a large tumor removed from the nerve sack at the base of my spine. I had no real issues, other then the horrible sciatica prior to surgery.

Post surgery I no longer suffered from sciatica, and had full use of my legs, but it was discovered I was left with saddle numbness. I an 44 years old, and went into surgery in great physical condition.

I attempted to self cath, but I found that to be extreemly uncomfortable, and learned to urinate by compressing my lower abdominals.

Bowl movements were a challange, and had to VASTLY ajust my diet. I am now a vegeterian, and for the most part have been able to defecate. My digestion is fine, but anything that even slightly causes constipation has been removed from my diet.)

Sexual function was challenging, and while could maintain an erection for the most part, the actual act of ejaculation was almost non existant, and could not feel it. The fluid just kind of drained out, and had a strange yellowish tint to it.

Now 15 months later, I have had steady improvements.

I work full time, and maintain a normal life for the most part.

My bladder function has partially returned, and I can empty about 50% of my bladder automatically, before having to compress my abdominals and finish the job. This has been very important to me as I perform in night clubs as a musician, and during the compression of my abdominals, my bowls will usually be compressed at the same time, so I have to be sitting down. Not really an option somtimes when out in public. So I can empty my bladder as much as I can standing up once an hour until I get home.

My bowels do function, but I lack the involentary muscle function to properly empty them. I do go often, but it is not enough. Once every ten days of so, I drink about 8 ounces of saline laxitive, with about 16-24 ounces of water. That completely cleans me out, and allows me to have a fairly normal life.

Very recently, I regained the muscle function to actually have a normal ejaculation, with the full pleasure sensations that accompany that function.

My surgery was completely experimental, and I was lucky to have an amazing Nerosurgen, and Radiation treatment center here in Texas at my disposal.

The important thing is to STAY POSITIVE. Negative thoughts will increase the stress response in your body, slowing the healing process, and increasing inflamation.

This condition can be overcome.

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Any relevant information you want to give? Like what scans or tests he had? Surgeons dont just "go in", as sadly some of us know.

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Hi, I'm Jeremy. My handle is tongue in cheek. I am wondering if you think things could have been done differently for you and if so, exactly how. I am both medical and a CES sufferer myself. My question goes to everyone really who has had an op for CES.

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Hi Jenn you show great understanding. How did you manage to help, as a girlfriend? I am 4 years post op, still severe walking difficulties. I am Jeremy, my handle is tongue in cheek.

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Hi Jenn0,

I am facing a similar situation like your boyfriend. I can walk and do any function normally except my bowel and bladder functions. What steps or excercises or any suggestions to get my bowel or bladder functions back can you suggest for me ?

Thanks.

Shreenath

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Thanks for that info...i had surgery for ces...and thankfully im recovering well...i still get numbness creeping in especially at night when resting...and saddle area n buttocks inner thighs still tingling ....im 5 mths post op ...i had disc L4 L5 removed n also bone removed i think they called it decompression...( for spinal stenosis). ....hope ur boyfriend is recovering well too...

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Hey there,

Really nice to read your post. I am 1 week post surgery from a disk bugle in the L5 S1. It caused CES but I was only numb on both sides of my legs for a matter of 6-7 hours. NO ONE has any good news about this. I have saddle numbness and am unable to relieve my bladder and so far my bowels on my own. I am a 30 year old woman who is terrified!

Anyone with a bit of hope from this who can come forward and share would make my day better

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Where are u now Maria?

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I just joined this site after surgery and spending several wks in a rehibilation hospital. I see that you experienced much of what I am dealing with now. I am wondering how you are doing over a year later?   My hospitalization and surgery was the day after Thanksgiving 2016. I am struggling with regaining my balance so I have to use a walker for now. My bladder and urineary track work good now, but did not work at all right, after the surgery. I continue to do therapy, outpatient, three days a week in a pool. My goal is to return to work by the end of Feb 2017. I will have a desk job till I can walk with just a cain. My employer has been sooooo supportive. I am so thankful for them. 

I don't know if you're even on this site anymore, but if you see my post I would love to hear from you, if you are willing. Blessings

 

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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?

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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???

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Before the ambulance arrived, I was on the floor for three hours, talking on the phone , and having lunch. Only my  back hurt and I could not move with out extreme pain. BUT I could move my legs, feet  bring my knees up and I was not having any trouble urinating or with bowel movements.  When the ET's sat me up and put me on a chair I heard it go. Had to have morphine in ambulance. They moved me from a house chair to their chair that went down stairs, then from that chair to a stretcher. What could have been done differently ? I asked them to drag me on a blanket to the stairs and slide me down the stairs on the board/stretcher. They did it their way and here I am CES. Lucky for me th surgeon came rignt in as he knew what it was form the symptoms they reported to him. No feeling in legs, unable to feel a cathiter. I had no feeling or movement from my waist down. That was on the day after Thanksgiving 2016. Today I am happy to report I am walking with a walker, still working on my balance, and have a slight drop foot in one foot. I am encouraged and working hard to get back to work in the next couple of months. Will still have wheel chair for long distances and walker for short. I do rehab three days a week and do exercises by myself at home, It's hard work, but it is all worth it. 

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Hi, Jenn! Its been over year ago, how is your boyfriend now?

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Hi Mary! Could you give me some light?

I am L1 fracture incomplete spinal cord. My sccident was jan 4 2017. Today march 4 2017, I can walk short distances with walker. Felling on my right foot slightly coming back. I have bowel and bladder incontinence. Will I be able to feel my genitals again? Im 21 so it stresses me thinking no more sex life. Will I be able to walk again without walkers ?

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I'm not a doctor, but from what I read, the sooner the surgery, the better the results.  As I said my sons occured the day after Thanksgiving. Unable to move anything from waist down. I would think, you would have the same results or maybe better as you probably were operated on right after the accident. I've read posts from people who's doctor waited for long periods of time before they diagnosed Cauda Equina and it left them in very bad shape, some with symptoms yet after many, many months. My son reports all the pluming is now working well.  I read on this site that  one gentleman sued the doctor and won. The key to my sons success is the amount of time he puts into exercising the muscles outside of physical therapy. The six weeks in the rehab hospital gave him hope, motivation and the attitude to "make it happen." He told me he does leg exercises while he is in bed, or just watching TV. When he is standing up to the sink, he does squatts to build hip muscele. He never says, "I can't" or "I don't want to." His goal it to return to work and be able to play with his daughter and wife. I have no doubt he'll make it.  I hope this will inspire you to think about what you can do now and build on that, and not what you can't do. One day, hopefully you'll be suprised by a new sensation, indicating progress towards you goals. Prayers for steady progress, for courage and determination to work hard  and most of all patience during this long process. Blessings