I've never posted before - so am posting now in hopes of maybe gaining some insight or encouragement.
My 23 year old son has CES. In April of 2017 he fell 60 feet from a tree (he worked with a tree company). He blew out his L1, among many other injuries. Now, 9+ months later, he has not regained bladder/bowel function. There was so much going on during those early days, and CES was not really explained to us. The back surgeon did tell me that my son might not regain bladder/bowel function - and explained about the nerves. I was not really able to digest it all, I guess, b/c of all the injuries and surgeries. Some months later, and after much internet surfing on my part, the urologist did explain it better. When my son fell, he landed on his butt. I guess this is what damaged the Cauda Equina.
This is such an emotionally devastating injury for a young man. It is very hard to watch your son deal with such an injury. Like I read elsewhere on this board, to the outside world he appears to have recovered so well from his fall. No one can see the lasting damage. But it has shattered his self confidence. I know we are all so grateful that he survived his accident - but still this is so hard.
He is now getting electro-acupuncture treatments to try and stimulate some recovery. Nothing notable has happened yet.
Hi, Spence. I’m glad you’ve taken the step to join this forum to get support and information. This is a small forum, without heavy traffic or extensive medical information,...but you can get that other places online. What we do offer is empathy, our own knowledge, and links to what might help you. As I read your story, it put me back to four years ago when I was clueless on the meds I was being given, my posibilities for independence, and what to call all the nightmarish changes I was experiencing in my body. I’m glad I had my normal youth before this accident took away so much of me, and I’m sorry for your son’s loss, right in the prime of his life.
My injury at T9 incomplete took away almost all feeling and function below my bust level, plus I’m female. So, there will be several other people responding to you here with many more specific suggestions for your son’s care and prognosis than I can give. But, I’m here for you, too, and wanted to greet you.
Welcome spence, I am pleased that you joined the forum. I have CES, for 7 years now and I can understand your feelings.
Firstly, please journal your son's progress daily because he will highly likely make more progress from this point. His nerves will still be regenerating and this will be hardly noticable but a journal will help you ( and your son) look back and reflect upon the progress that he has actually made since the early days.
The pain that he has experienced could be nerve pain but again journal as this will teach you what is changing, what is an issue seperate to CES or what is associated to CES.
The 'Cauda Equina' is a bunch of nerves that branch off from the spinal cord, these nerves control the bladder and bowels and sexual function, legs and feet so depending on the severity of injury to the spinal cord and position of the damage, will signify where and what nerves are damaged and how that affects function or sensation or both.
The therapy that your son is having may offer some 'healing' which is always a positive, how much function it may improve is one that only time will tell.
The best advice that I can give is for your son to stay on a healthy balanced diet and develop an exercise regime and as the sexual function may be affected, find him some information on what may help him with this.
Has he spent time in a spinal cord injuries unit as this is a place where he can be given expert advice? On another note, please read through posts on the CES section of the forum as I think you will find some very helpful info there.
I don’t know much about CES and for that I am reluctant to respond but I can tell you I empathize with your situation. It is hard for me to be anything but thankful for the return I have had when others may not have had the same amount of return but I am far from able bodied and have plenty of issues with bladder/bowel function, AD and I have no balance! It’s also hard to be happy with all of that going on so I can completely understand feeling upset about your circumstances yet also feeling humbled by them as well. You are in the right place for moral support! Sorry this happened to your son but I’m so glad he’s here!!
spence,vintage,Lαrα,ladylimpsalot,bre, Thank you for your responses. Lara, he was in a spinal injury rehab hospital for a month after he was released from ICU. One question I have is about how long it could take for any bladder/bowel function to return. His urologist (who is a neuro urologist) said that after 6 months there was little hope. But his attending physician at the hospital did not agree with that and said it could take years. I think having hope is better than thinking it's too late.
I have an injury in a different area of spine, and I had no bladder function(couldn't pee on my own) or little bowel function for 2 months after injury, luckily after 2 years I have regained both bladder and bowel function. they are much weaker than before injury but are functioning satisfactorily. and are still recovering slowly and steadily and will keep recovering for years. I feel the body never stops healing itself as long you are in fair condition in health so never give up hope and continue towards the long term goal, even though it can be heartbreaking at times.
spence ,vintage ,Lαrα ,ladylimpsalot ,bre , Thank you for your responses. Lara, he was in a spinal injury rehab hospital for a month after he was released from ICU. One question I have is about how long it could take for any bladder/bowel function to return. His urologist (who is a neuro urologist) said that after 6 months there was little hope. But his attending physician at the hospital did not agree with that and said it could take years. I think having hope is better than thinking it's too late.
Generally the docs say that anything could come back within 18 months. But I know people who have had improvement even after that period of time.
Doctors love to believe they know the answers, and they don't. No one can predict a particular patient's outcome, you just have to design a rehab program that makes sense to you and hope for more until you, yourself, decide to move on and be satisfied with what you have. And you still may see improvements.
Hi Spence, I’m sorry to hear about your son’s injury. My 24 year old had a complete spinal cord injury from a fall sustained in September, 2014. My husband I were devastated for him. I know how you are feeling. More than 3 years later he is doing well. He still Does not have bowel and bladder, but he has his routines in place and manages it well. Still, we never give up the hope that someday he will get more back. You really do get used to a new normal. Life can still be good. He is happy and well adjusted. Best wishes.
Hope ,Thank you for your reply. Like your name implies, you give me hope that my son will also adjust to his injury. It will be a year in April and, when I reflect back, I can see that he is moving forward. It is very hard to watch your child suffer, as you well know.
Hi. I’m Anne, and I was diagnosed with complete Cauda sequins following a botched back surgery to repair a ruptured disc. The surgeon admitted that he accidentally cut part of the spinal cord during surgery. Over the last six years I have struggled to manage all the effects post surgery and have ended up with both a colostomy and a urostomy. Recently I had to have my entire bladder removed because it was constantly spasmodic and I had so many UTIs that my kidneys were being affected. I have built a resistance to all antibiotics over time. During the bladder removal surgery I had to have my entire large intestine removed due to lack of blood flow making the tissue floppy and digestion problematic. Some small intestine was removed and the rectal stump removed and sewn up. They made a bladder for me out of my own tissue and attached it to a urostomy which I self cath. I’m only 7 weeks post surgery but the urostomy stoma constantly leaks urine as I can’t seem to stretch the new little pouch enough to hold all the liquids I need. I was wondering if anyone on this forum has had any similar surgeries and if they could offer advice on how long it will take to recover to a new normal with all my stomach hardware. I am beyond frustrated and exhausted. I lost my husband to pancreatic cancer one year before the surgical accident so being a widow at 54 makes coping with all these life changes even harder. Will I ever feel feminine again? Devastated
Anne- I am so sorry to hear of your recent trials. All we can do is continue as best we may. Given you are just 7 weeks post surgery I think it likely you will improve on urine management as time goes on. It is troubling that so much intestine was removed, but you will cope. Will you ever feel feminine? I no longer do and I no longer care. It took time. For me the important thing is to feel healthy with minimal pain, and to maintain my strength. Those 2 go together.
I'm sorry you lost your husband. Managing alone can be scary, but some of your online friends, like me, that have known you awhile, care.
I step in the water, but the water has moved on...
Hello Anne, I'm so sorry for what you have been through but I'm glad that you have found our group, knowing that others understand what difficulties you are facing is helpful.
Your question about feeling feminine again.... after my accident, my husband left me...he also took my femininity with him. Looking back now, I realise that I was so silly, it wasnt my femininity he took, the accident and and him leaving took away all of my self confidence, sure I could fight the physical injury but fighting the mental aspect was a completely different matter. I'm now 53 and I agree with Tetra...... I no longer care about feeling feminine, my health and well being is so much more important. I have had a couple of longer relationships since my accident (and many dates) and have got to the point where for the last several years I have decided to be single and I'm happy that way, I will probably date again one day but for now, being independent has made me realise that I dont need nor want a man (or woman) to validate me.
Anne, you dont see yourself as feminine but if you can work on building your self confidence, you may just realise that being feminine just isnt as important as trying to be happy again.