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
dave03970 Jenn0
Posted
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.
Charles555nc Jenn0
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jerry1776 Jenn0
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shreenath11713 Jenn0
Posted
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
chrioli shreenath11713
Posted
Hi shreenath
Eat lots of fruits and vegetables. I eat 1/4 cut of pumpkin seeds over 2 days. Chew really well. Cut out large amounts of meat. I'm vegetarian pretty much. Also I started taking dry capped ginger (not fresh) about 5 a day to help bowels. I use bowel massage and see a certified massage therapist for this. Routine. Make an effort to go the same time of day. As far as the bladder; retrain it to go by the clock. Mine was dribble dribble stop start without emptying. Let it fill for 3 or 4 hours then decompress. this is a retraining. Then cath and check residuals. Also I drink the same amount everyday. No surprises. Keep time. Eventually it's either the cure or a new routine that you instinctively just do as management. Mine is management.
keith94082 chrioli
Posted
marie16426 Jenn0
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rachel92558 marie16426
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rachel92558 Jenn0
Posted
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
laura_42543 rachel92558
Posted
Hi Rachel, I hope you are doing well? I was curious to see if you have regained any feeling back yet? I am 7 weeks post op and suffer numbness down my left side and also currently have a catheter and struggle to open my bowels. Like everyone says it's the "unknown" and can take 2 years but I would like to know what people have experienced when getting feeling back or bladder/bowel working properly. I know everyone heals differently but at 29 years old I never expected to be dealing with such a lifestyle change.
Thanks
Laura :-) x
DeeIG laura_42543
Posted
Hi Laura
I'm not sure if you've seen my post. I'm in a very similar position. After surgery to remove herniated disc I have weakness in both legs, no bowel or bladder function. I'm self catheterising and bowel is a challenge. It's now nearly six months and very little change unfortunately.
I do feel for you. I am 62 and have had to give up work, which I loved, and it's been very difficult. You are so much younger and I really hope you have some recovery.
I haven't seen anyone else in this position.
laura_42543 DeeIG
Posted
I'm sorry to hear that although one positive my surgeon recently had a patient who's bladder came back at 22 months. I have my twok appointment Monday so am very nervous. I keep getting sensations but I am unsure if this is nerves healing in my leg and foot or not. I don't know what the healing process should feel like :-( Have you regained any feeling back or is it still as numb as prior to op?
DeeIG laura_42543
Posted
The preoperative numbness and pain had gone but new numbness which is still there.
The neurosurgeon I eventually saw has suggested the leg weakness may improve. But no one has been very optimistic about bladder and bowel.
Do you know what caused these complications??
laura_42543 DeeIG
Posted
My L4/5 slipped and compressed the nerves but I had numbness 4 days prior to op... I have some feeling back in my foot but still walking with quite a limp and the muscles aren't back. Have you had any bladder scans/tests? I can feel my bladder filling but the nerve telling it to open is damaged and so won't open. I was advised I will get an appointment to go to Sheffield as they are the spine specialist.. maybe this is something you could push for??
DeeIG laura_42543
Posted
I am seeing a neurosurgeon after 3 spinal surgeon's. Also a neuro-urologist and neuro-gastroenterologist. All work in London and local spinal injury unit so feel now I am getting a lot of support.
I am having a bladder function test in April. I know I want to go but can't without a catheter. Seeing team about bowel and going on a trial of a new system of bowel management. Waiting for physiotherapy, told I will hear in April.
It's been a huge adjustment. Do you have support?
keith94082 laura_42543
Posted
I waited 4 moths after my emergency surgery. To decompress my nerves to low back. I stopped going a wee at to have a urgent Sybil catheter through my belly I was disable because of what happen I was left 6 days. Then 3 years half years later I at to have a colostomy I just could not feel to go a poo. Then in July 2012 they operated and done a ideal conduit. W wee bag permanent. Then I at to have my bladder removed it had septic in it. All this because of being left.. I have had 3 more operation 2 hernia which were bad and a colostomy revision. My last Mir scan show bulges multi level degentive changes. My neck the gap looking straight down their is no room. It's effecting my arms right hand and my neck hurts. I will know on 5th of April what the plan is. I am 1 of the worse outcome to causa equine. It's call established cesydrome. I sued for damages and the settle out of coutmrt. I want my old active life back. I have at to have physiological therapy I am so anxious I lost my confidence. I try but the pain is so bad. Never mind. Bless u all hope other people read this share it would u.
laura_42543 DeeIG
Posted
It sounds like they are doing everything possible to get you back on track. What does the new bowel management entail? I have started physio and my walking has improved although recently my foot feels swollen (although it isn't)... I wondered if this was a sign of nerves healing? Do you know any recovery stories? I know they say two years but has anyone had no improvement for say a year and then all of a sudden nerves heal? I just want to be realistic with my outcome...
laura_42543 rachel92558
Posted
Hi Rachel, I am just curious to see how you are progressing? I am now 7 months post op and although walking better still no push off with my left foot? Has anyone else experienced this as I haven't read where anyone has regained it back? I am self cathertirising but can wee if I push (the urologist advised not to do this though)...
Thanks
Laura
david94798 laura_42543
Posted
Hi Laura,
I'm glad you have seen some improvement since your op with your mobility. My right side was effected and although my walking has improved considerably since the early days it's still lacking power on this side.
I hope you don't mind me asking but was interested to know why you're urologist advised against pushing to wee. I am in a similar situation but my GP and the surgeon didn't even mention to me about self cathertirising as I explained to them I was emptying my bladder naturally albeit it by pushing and it taking longer than what was normal before. I'm concerned I might be doing some damage without knowing about it.
laura_42543 david94798
Posted
Hi David,
Thank you for replying... I think it was more with me being female and pushing that my bladder could prolapse but reading on here a lot of people squeeze... I would have to lean over slightly and squeeze and sometimes it made me out of breath... although one lady told me that by doing this my bladder would hopefully re train, so it would be interesting to hear other opinions. How long since your surgery? I have a follow up next Tuesday and want to ask about the test to send signals to your muscles to see if anything is getting through... have you heard of this? Also I've just started taking vitamin b12 after reading online this helps... I'm curious to what (if anything) people have tried...
Thanks
Laura
david94798 laura_42543
Posted
Hi Laura,
OK that would explain why you were advised against pushing. Obviously every case is different and circumstances are never the same for everyone.
It's been 4 months since my surgery. On the whole I've made a pretty good recovery. Still have partial numbness in right foot/bottom area but hopeful this will continue to improve over time. I've heard other people mention about the b12 vitamins so will be interested to hear how you feel that goes for you.
In my 10 week follow up appointment with my surgeon I asked if there was any tests, scans can be done to check the strength of the damaged nerves and to see if there is any regrowth happening but he kind of dismissed this and basically implied nature would just have to take its course and see what happens over time. Whether that's true or not I don't know but would be interested to hear what they say about it at your appointment.
Regards
David
laura_42543 david94798
Posted
I will let you know what is said after my appointment next Tuesday :-)
Laura