3 weeks since CES surgery

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Hi,

I have just joined this site and thought I would post my recent story with CES.

I am male and 36.

To cut a long story short on March 29 2017, a few days after my initial onset of back pain, I had the first red flag symptons of CES namely numbness in right buttock/top of leg and foot. Shortly afterwards i then started to suffer with urine problems, specifically having to strain to go. Bowel movements were also not regular but I put this down to the fact I had been prescribed Codeine based meds after my first visit to the GP. We both thought it was Sciatica which I have suffered on and off for since 2002.

After 2 further doctor visits between end of March and April 13 where the saddle numbess and foot numbness was always present, I was eventually sent to my local hospital for an MRI scan as the Dr I saw on April 13 was not happy with my conditon. She did a very 'personal' examination and felt I was showing symptons which could be connected to CES. The MRI scan was done and came back as CES. I was transfereed to another hospital 30 mins away and was operated on that night. 12 hours after the visit to my local GP! The operation was a microdiscectomy of L4/L5.

Now the main reason for my posting on this site is more to update my progress just over 3 weeks on from the op and to receive advice/opinions on other people that have been directly or indirectly affected by CES. I have read many a review and story and would seem a lot of people have had a worse time of it then me. Regretably I had the symptons of CES about 16 days before the op when all advice says you need to be operated on within 24-48 hours max for a good recovery.

I was discharged from hospital on April 16, 2 and a half days after the Op. In the time since being discharged (3 weeks) I am currently able to walk approx 25-30 mins outside without any aids although by the end of these walks I am quite tired. This is quite slow paced and with a little parital limp and I do have to watch my step. This is because my right side numbness is still present so I feel a bit inbalanced but I feel this is getting better gradually especially in the foot area. I am doing the exercises everyday based on the information sheet they provided.

I haven't suffered with any incontincence issues since this whole episode started. My toilet situation is that I can pass urine standing up albeit I have to push for about 3/4 mins for me to feel I have emptied my bladder. I can feel when I need to go which is reassuring.

After a few days of leaving hospital I didnt have a bowel movement to speak off. Thankfully this is now more consistant and same as passing urine I need to push. 

i have just started to drive again and plan on returning to my office based job, initally on a part time basis, after 4 weeks from the Op which is what I was signed off for.

The wound itself is healing well although some days can still feel a bit sore and tender in that area. The staples came out 10 days after the op.

It has been a very rough few weeks for me but friends and family have been very supportive. 

Based on where I am upto after 3 weeks, and reading other stories on here and other websites I feel quite positive with what i have acheived since the op, espeically as 16 days passed between onset of CES symptons and the op itself I feel my current condition could, and probably should, be a whole lot worse. For that I wouldn't say im grateful because as is natural I still ask myself 'why me?' but appreciate reading other stories, people seem a lot worse off than me.

I am fully aware that the numbness may never subside and although it feels like its improving in these early stages it may come to a halt soon. This applies for the toilet situation as well. I would love to be in a situation at some point in the future where I can just go for a wee normally although I appreciate its still very early days.

So thats my story. I have tried to keep it as brief as possible but outlining the main points.

As I previously mentioned, any advice/opinions or guidance would be much appreciated by anyone with an experience of this condition. I am happy to elaborate on any particular aspect of my story/experience so far and share on this forum if asked.

Thanks for reading

David

 

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8 Replies

  • Posted

    I am the opposite to you.

    I was left for 6 days in full compression L345 i have been left with a colostomy and a urostomy bags. I am un balance on my feet foor drop right and left feet worse right. My leg go's died with out warning right 1. I have had falls one put me in hospital for 6 weeks on my back. They left my bladder in but at to remove it 6 months later. My whole spin as problem now . I won damages the hospital that left me for 6 days without any meds no Mir scan.they settled out of court. It will be 9 years this August night mare I have had 3 major ops because of bad hernia and a aroma revision. I am going on a 2 week assessment to see if I am suitable for neruomodulation it's a disc with battery it can break up the pain signal to the brain. But that won't stop the back getting worse now my neck as a compressed disc. Only since I moved hospital as my after care been taken up 5 years and I had nothing. To think if they had done the operation with in those 48 hours would I have had less damage. Yes is the answer. For years I suffered back pain but I have a very high pain tolerance. I miss my old life I was so active I am 59 now indoors most of the time.

    I have been told I am the worse case in this country. To be left with so much damage. My discs broke off and wedge trapping all the nerves to my lower half. I suffer all the things ces does numb Ness pins and needles hot and cold water running down my legs walking on a pebble beach that hurts as it's non stop if I put weight on the legs.

    Any way it as cheered me up to hear about how well your doing. Keep it up

    Yours keith

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  • Posted

    Hello David,

    Thanks for sharing your story and good luck with your ongoing recovery. Yes reading the stories here has made me feel less alone on the CES journey & for me aswell.

    I understand the feeling you describe of 'why me'. If you were fit before this, there is something of a greiving process to face for some of us. For me, with the CES, if your still getting about ok (for the most part) & have bodily functions (for the most part) , it it is easy to see glass half full.

    Your walking - good for you. This is much much further than I can walk and I'm years in. I still feel so grateful I never fully lost mobility and did other things permanently like others on here. Who I feel for. It went 2 months for me before I got the opp to stop it progressing. I know CES is gaining attention as a full bilateral compression & medical emergency but the slow onset kind and the chronic kind - what we survivors live with after does not seem to get as much attention. I am lucky to have a good doc that helps me maximise quality of life with the nerve pain , loosing balance, numbness and other joys of CES. You seem to already know/ recovery of what you will have to live with can be a long journey of years. I hope your one of us that will make a full recovery. Good on you to keep working. Keeping moving and doing as much as I can has worked for me to keep some of my old life. Best of luck from fellow CES er

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  • Posted

    Hi David,

    I'm 32 year old male from Philly. Where's home for you? I had emergency CES surgery 3.13.17, 8 weeks ago.

    While recovering from a small hernia, I twisted my back to look behind me while parallel parking. When I got home a few minutes later my legs began to cramp and I could not walk. The next morning (12-18 hrs later) I went to ER and told the Dr. I had numbness in my leg as well as extreme back pain. The Dr. thought it was a simple slipped disk. He had a small suspicion of CES but at that point I was still able to urinate and could feel my rectum. He sent me home with steroids and told me to get an MRI and follow up with my orthopedic Dr. The next day (36-48 hrs later) I got an MRI, it was also this day when I became unable to urinate. Finally I went to see the Orthopedic Dr. the next day (almost 72hrs later.) The Dr. took one glance at the MRI and sent me directly to the ER. I had my CES surgery a few hours later.

    I was in and out of surgery within 5 hours and spent two nights recovering in the hospital. I had a partial L4 and L5 Laminectomy. After surgery I was still unable to urinate, a foley catheter was put in again. I still had numbness in my left leg, foot and seat, this was very concerning because I thought feeling would come back immediately after the surgery. On the bright side I was able to walk, albeit difficult.

    The first week at home I took short 15 minute walks. As the weeks went on the walks got longer. A week after surgery I went to the urologist and they removed the foley catheter. Luckily, I was able to urinate on my own! I felt very fortunate in my progress but was still dealing with the depressing feeling that life will never be the same.

    It is now 8 weeks after the emergency CES surgery and I'm doing relatively well. I am able to walk a couple miles at a time. I do have a slight limp that has been decreasing. I get nerve pain in my foot when I am on my feet for a long period of time. I still have numbness on parts of my left side but it has gotten slightly better since day one. Sitting on hard surfaces can be painful, sometimes I bring a seat cushion to a restaurant and baseball games. When I urinate I am not sure if I empty my bladder completely. Sometimes I will go often and other times I can go hours without urinating. Bowel movements can be difficult at times but I am going every day.

    I will start Physical Therapy next Monday (9 weeks out). The most difficult thing is the uncertainty for the future; will felling come back, will nerve pain stop, what if i get CES again, what will happen if/when I get another slipped disk, will I need another surgery in the future to install rods and screws in my back?

    Lastly, I followed up with my surgeon a few days ago and he was positive about my recovery. He released me to do bending, lifting and climbing on a gradual basis. He suggested vitamins that may help with the nerve pain, Alpha Lipoic Acid and Super B Complex, Ill let you know if I notice a difference. He also suggested Pilates.  

    I have hundreds of thoughts and feelings that run through my head day and night but all I can do is take it one day at at time and be thankful for what I have. I hope your recovery is going well. Stay strong, be positive and keep moving! Keep me updated and let me know what is working for you.

    Sincerely,

    Brandon

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  • Posted

    I have my follow up appointment on Monday as its 10 weeks since my op. This is with the surgeon or a member of his team. Does anyone know what this entails? I am assuming its just a check up and some questions? Any advice appreciated.
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  • Posted

    Dear David

    Your GP should have referred you for an emergency MRI as soon as you showed neurological symptoms of CES; i.e. any 'red flags' or at least for emergency Orthopaedic or Neurosurgical opinion. You may well have a medical negligence claim - if earlier treatment would have resulted in less symptoms, which it usually would, unless you left it too late before seeking medical assistance.

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  • Posted

    David

    I think that you have a strong claim for medical negligence; they failed to act on red flag signs of CES and I believe that your medical condition would have been better with earlier decompression surgery. See a solicitor, like myself, who specialises in Medical Negligence and who has run CES claims.

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  • Posted

    I think you have a claim for compensation - if you had red flag symptoms then an emergency referrral was mandated for emergency MRI and then very prompt decompression surgery; If you wish to make a claim then see a solcitor with specific experience of CES claims; I have handled many such claims and they are particularly complex
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  • Posted

    This is just a quick update on my condition with an emphasis and hopefully some advice on 1 particular aspect of it. i am now 17 weeks since my operation which was mid April. My mobility has improved immensly to the point I can walk and get around for over an hour at a time without stopping. 

    I do have some numbness on the right foot and still in the saddle area on the right side that has remained unchanged i would say for a few weeks now although maybe still improving very slowly in places but that is difficult to tell on a day by day basis. 

    As I mentioned at the top of this message there is one particualr area which I have never really got on top of and thats being able to easily have a bowel movement. Sometimes i have to strain considerably, others not so much. occasionally it can be very easy. I have tried to follow all the usual advice like high fiber foods, plenty of water (about 6 pints a day) etc but alas its never been consistent. I have been taking Dulcoease 3 times a day (on GP advice) over the last couple of weeks and that seems to work for a bit, then go back to normal, then work again etc. What I really want is to keep it as soft as possible therefore making it easier to pass on a daily basis.

    I know everyones body works in different ways but just wondered if anyone had any tips that have worked for them? Any advice appreaciated.

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