Hi. I have just founf this support group and have been reading the comments. I have had CES since 2011 and have been trying to live a normal life even though I walk with a limp and have no feeling at the back of my legs and my left foot. I have to self catheterise and have total safddlebag anaesthesia. I struggle to sit for more than 20 mins and have regular electricity like pains shooting down my legs. My issue is that I am being moved to an office that is over an hour a way and I am really anxious about this journey that I will have to do every day. Is there anyone else who finds sitting on trains or in the car for longer than 20 -30 minutes an issue
You need to see it doctor. I struggle 24hours a day. I can sit for long or stand. I had urgent surgury in Aug 08. They said the relived the compression but the nerve damage looks bad.. I tried to carry on as normal but had 2 serious falls I was in hospital for 3 months with these falls. I then lost my bladder feeling had a subabic catheter then the done a ideal conduit I now have a stoma and bag after that 6 month later they removed my bladder as it had septic inside. Before that I had a colostomy see i have had hernias remove and repaired plus a stoma revision.i would have had none of this stuff if my compression been dealt with straight away I was left for 6 days sent home the first time sent to a&e with a doctors letter. I sued and won a lot of compensation. I have established causa equine syndrome. My back as curved it's self I have so many problems with my back and now my neck. I have had 7 major operations I go into st Thomas's in London for a 2 week assessment for a thing called neruomodulation it is a disc they b put in ur back it as batteries. I breaks the pain signals up so u can reduce ur pain medication. I will need rods in my back as they never supported it when the done the urgent surgury. They should of I can't sue them as they are the same health trust. I am one of the worst cases of ces I am also disabled.
That me so u know I can make suggestions.
U must get a up-to-date Mir scan. If u got all these problems u need surgury dis u have any surgury if not u need help. If u have had surgury. U can't be left to self Cath ur self for a long period that need looking at. U need good meds my main ones are progablin 300mg twice a day. And slow release oxcontine 30mg 2 a day slow release. Ur train journey will make u get worse. I find a trip their and back on hospital transport I am in bed the next day. I keep myself mobile u will find in time u won't be able to do much get help now I know it job u need. I work for the mod so I was well looked after. Please do something if u feel u need to talk I will let u have .y mobile number.
Sorry for your pain. I've had surgery for CES in 2011 also. Our symptoms are almost identical. We run a Facebook closed group for members with the condition if you want to join. Perhaps you have already have! I'm in the UK.
Naheed
I also have CES and have trouble sitting or standing for very long.it feels like a bad toothache in my legs and buttocks. Perhaps you can talk to your dr. And maybe get a note and not have to move to a new office. I tried to go back to work but couldn't . Plus at work they had me carrying big note books etc. they are not very conscientious.
Good luck!
Hi I have problems with CES too & would be interested to see FB group. It is so 'rare' it has been good to get information & hear from others on this site.
Would you just search CES in FB?
Hi thanks for your post,
I can relate. I still drive, though there are days I cannot & I do it with lots of thought. I have a lumbar support belt, memory foam cushion under me and lumbar cushion support behind me. Whether I am driving or passenger I always use these things & they do really help. Yes 20 minutes is about my limit for comfortably sitting too & about how long I need to lay flat for muscle spasm to relieve a bit.
Good on you for continuing to work. I have found I have to keep moving about to different positions between sitting standing. Chairs are not my favorite things anymore. Does your doc support you with ideas for keeping active in life?
I hope you can get some support to keep working - can you talk to your union? There are laws about reasonable accomadation but so often it seems better to not identfy as having a problem if you want to get or keep a job, which is just wrong. Good luck with it. Let us know how you go.
Sorry to write on your thread naheed. I havn't been on here in a while. I just want to ask Keith - did you ever end up getting your spinal cord stimulator in the end? How did it go?
I admire both of you for continuing to work. I was not able too as a result of a piece of disc that remains on the CES nerves post surgery and as a result of that sunk into a severe depression. I currently am accepting early retirement and able to do things that are a distraction like art, writing and the like. My life is controlled by my CES though in terms of limitations. Activities are in short bursts with rests between. I hope anyone who can continue to work can find a supportive situation for all that CES requires of us.
I would love to join the facebook group. What are the details? Any support I can get, I am taking at this point!