More than 6 months of medical negligence helped give me CES.
Thats just truly crazy truwrecks, they should know better by now
They should but the Neurosurgeon at the VA kept calling me a drug seeker because my basic MRI didn't show any more than minor compression. If they had done an MRI with Contrast they would have seen the scar tissue that was strangling my spinal cord from L3 down, and spreading. I had to go to a private doctor and go through more testing and therapy for 3 months with worsening results before they decided that surgery was the next step. My doctor scheduled me for 45 minutes in surgery to clean up the discs. When I woke in recovery almost 5 hours later I found out the truth of how serious the problem was. My doctor came into recovery and told me if they had waited much longer I would have lost all motor function from my hips down. As it is now I have limited function and partial paraplegia from the knees down.
That's unbelievable truwrecks! I don't know why cauda equina syndrome has been neglected many times when the signs & symptoms are being thrown right out!
I had a large central disc herniation at L4/5 and was left with CES in march 2011. By the time I went home 2 weeks later I was worried as I again had sciatica in my left side but put it down to early days recovery. Lo and behold I again had the same disc herniating with all the same numbness present. this time I was booked for another decompression and fusion in the September. As only I could I bled very heavily and the op was stopped and I was transferred to another hospital and woke the next day unaware of what happened. the fusion was completed a week later. I presented with ces symptoms in both legs and was sure that I had a run of bad luck. Now I find out at my annual spinal unit review that it is believed I have conus medularis since the large bleed in the operation. My poor head is in a spin as I was aware that I have been fighting a losing battle trying to do more than I could, and have now been told I must pace my activities. Not sure where I am at now Aargh!!!!!!!!!!!!!!
Hey june, sorry to hear about all the troubles you've gone through. I can't image how frustrated you must be with everything going on! Have the complications been resolved or do you still have to do more op's?
Hey june, sorry to hear about all the troubles you've gone through. I can't image how frustrated you must be with everything going on! Have the complications been resolved or do you still have to do more op's?
Thanks DJ for the response I only wish that I could have things resolved LOL. Before the appointment I had reached acceptance stage and was prepared to put up with what I have. But I now feel that I have been let down somewhat by the system as no one seemed to understand my concerns regarding my poor progress and I always felt I was letting everyone down!!! I may well have learnt of this a year ago if the annual review was not a year late being booked. frustrating as I have been battling with increased incontinence and a failing bowel and knew that it did not seem right this soon after only three years. But hey-ho I will survive this I am sure.
Hey june, sorry to hear about all the troubles you've gone through. I can't image how frustrated you must be with everything going on! Have the complications been resolved or do you still have to do more op's?
Thanks DJ for the response I only wish that I could have things resolved LOL. Before the appointment I had reached acceptance stage and was prepared to put up with what I have. But I now feel that I have been let down somewhat by the system as no one seemed to understand my concerns regarding my poor progress and I always felt I was letting everyone down!!! I may well have learnt of this a year ago if the annual review was not a year late being booked. frustrating as I have been battling with increased incontinence and a failing bowel and knew that it did not seem right this soon after only three years. But hey-ho I will survive this I am sure.
Life's a rollercoaster june, there's ups and downs and you're currently at the lowest point of the ride. I was there too but I feel like things are going up so don't worry, things will get better for you too.
Welcome June Pacing yourself is important. I still can't do it.
I just feel there is not enough hours in the day to get things done since CES as it takes two to three times longer to complete tasks!!! Mind that could mean others may think twice about asking me to do things so then I will get more time to do what I want ( oh I guess that might be what the consultant meant) LOL.' I am a bit slow these days in more ways than one ha ha'
I am new to the experience of CES. I had a large/moderate paracentral herniation at L4L5 on 09/30/14 and surgery more than a month later due to saddle anesthesia, pain in my buttocks that felt like a really bad tooth ache (my words), progressive numbness in lower legs and bilateral sciatica . Realizing I had this was hard enough let alone, being treated poorly because of it. They did not catch the retention at first( 2 months later), now I am a self cath due to hydronephrosis. I told them I had frequency and urgency, they were wanting to hear incontinence. Anyone have such spotty medical care with a neurosurgeon who had little to no compassion? It was a work injury and I was dropped because I went outside the provider network and went to the ED. I encountered 2 people who said to me it can't be CES because it is a rare condition. Really? When do we rule out a diagnosis simply because it is rare?
chrioli, are you aware that someone should be given surgery within 48 hours ideally from the onset of symptoms of Cauda Equina.It concerns me that you didnt have your surgery until one month later.
Hi, I developed CES from a spinal epidural. I was given the epidural to treat a hurniated disc L5S1. It was obviously preformed incorrectly at my local hospital and was rushed to the neurosurgical hospital and had to emergency surgery.
The doctor who preformed said I was lucky that I wasn't left longer or I would have had serious complications.
My operation was over six months ago and I was improving. I still gave no feeling in some if my toes. Over the past 3 weeks I have been deteriorating and it seems to be another hurniated disc. Let's just say I am petrified. I am only 29years old, I am not even sure if they will opereate again due to my age. I honestly don't know if I could handle it again I feel like the doctor who did the spinal epidural has robbed me of time with my normal everyday life especially time with my son. I also have put the decision about more children has been put on hold as we don't know if my body can support it. I apologise for the extended rant, I have not met another person with this condition.
Post by kilg0retr0ut on Jun 11, 2015 9:05:57 GMT -8
Welcome kbothwell Has it been confirmed that you have another herniated disk? Herniated disc's can be treated without surgery. Six months is still very new, there really is no window of return although most of your return will happen in the first two years. You have zero feeling in some of you toes? If it feels worse then something may be wrong and I'd ask for another MRI. I'd try to talk with the neurosurgeon who preformed the operation. What type of operation did they preform? I'm no expert but I think children would be possible, but you will have to give yourself time to heal. I have only met people on-line with CES. I've been dealing with it for almost five years now. You have a lawsuit foresure, but money will never replace what you lost. You'll need the money because being handicapped is more expensive than regular living. You will face many scary things, but you will be able to handle them because you have to do your best for your children.
Do you have a P.T.? Exercise is huge right now. Focus on recovery, the rest can wait. Wish you well. Mark
I'm sorry to hear about the trouble you're going through. I can't even imagine how you feel! I think getting surgery is a good idea if possible. Leaving it may make things worse so it's best to fix it if possible. How much movement and sensation do you currently have?
Hi, I am new to the site and new to CES. On 07/15/15 I met with a surgeon to discuss options for a L4/L5 left side herniation and L1/L2 central heniation. The L1/L2 was older and did not seem to change since an MRI I had in 2010. The surgeon and I made a decision to have a microdiscectomy at L4/L5. I had been dealing with lower back pain for years and numbness began about 2 years ago. I also had left side hip pain. My symptoms included left leg, foot, and toe pain and numbness after standing or walking for 10 minutes. The doctor told me that his scheduler would call me by the next week to set up physical and surgery date.
My family and I were moving this week, so I was lifting furniture and putting a lot of stress on my back. On Saturday, 07/18/15 my family and I went to an amusement park. I rode several roller coasters and at about 4:00pm I had pain in my lower abdomen. At this time I was unsure what this pain was coming from. I went to the restroom and realized that I was unable to completely empty my bladder. I had the urge to go, but I just could not get all of the urine out. I then realized that the pain I was experiencing was from a full bladder. However, I did not know that it was from my back issues at this time. I told my wife and shortly after we left the park and went home.
After getting home and doing a little research, I read about Cauda Equina Syndrome and hoped that this was not what I was experiencing. I decided to wait until the morning to see if I would be able to urinate properly. I woke up at 4:00am with a lot of pain from a full bladder. I tried to go back to the restroom, but only a small amount was able to come out. I woke my wife and off to the ER we went.
They quickly diagnosed me with CES. I was catheterized and sent to a larger hospital where the Neurosurgeon that I saw the previous week operated. On Sunday, 07/19/15, I had emergency surgery on both my L4/L5 and L1/L2 herniations. I awoke from surgery with numbness on my entire left leg, foot, and toes. I also have new numbness on the right side of my Penis, scrotum, and right side of my perineal area. I am unsure how this will effect sex, as I am not healthy for sex yet being that surgery is so recent. Later the next day the catheter was removed to see if I would be able to urinate on my own. I thank my lucky stars that I am able to urinate w/o catheterization at this time. However, I do have to push and strain, and I am requiring laxatives to have a bowel movement.
The doctor is telling me that he hopes that after all of the inflammation and swelling goes down that the numbness will go away. Along with the numbness there is new pain in my upper hips and thighs. This pain is worse than any pain I had prior to surgery. I dropped to the floor today. It almost feels like electric shocks that travel down the front of my legs to my toes.
Anyway, this is my story. It is just beginning and I feel like I have a long way to go. I just hope I will be able to afford being out of work. I am 38 years old and I worry that I will have a difficult time obtaining SSDI if this becomes a need. I look forward to reading any comments or pointers to help me through this. Thanks in advance!