Understanding

I I'm sorry to hear about your friend. I was diagnosed with ces in 2017 and lost control of my bladder and have not had the feeling come back nor will I, I now have a supper public catheter which is permanent. My bowel I do have a slight sence but I have problems going either I'm constipated or I get the runs. I am on permanent pain killers and ante inflammation tablets and I am numb from the waist down on the left side. Mine will not return back to normal but I do hope and pray your friends will. There is not a lot you can do just be there for her fir when she needs a shoulder to cry on or to rant and rave and she will. Sorry I cannot be any more helpful and its a but blunt but its not very nice to be diagnosed with all the best Tracey xx

Hi, I'm so sorry to hear about your friend and hope all goes well for her. I have Cauda Equina and my whole life changed back in 1993. Short story is I went numb from the waist down after having horrrible back pain for a few weeks. The first hospital I went to kept me 24 hours with no diagnosis. They transferred me to another hospital and they also kept me for over 24 hours before some one thought maybe they should consult a neurologist. With in the hour I was having surgery, a laminectomy . By wasting all that time sitting for over 48 hours with nothing done to help me, other than pump me with pain meds 😃 the damage was done. I spent the next 3 months in rehab learning to walk again with ankle foot braces, (AFO's). My bowel and bladder was no longer functioning so I had to learn how to self cath myself. I had to have the nurses "didge stim" me. The most embarrassing momement in my life was when my husband and mother had to come in and learn how to do the procedure on me. I have no balance so in my house I use my wheelchair. I can only walk short distances and am able to use my cane. Any long distance I use my wheelchair or the electric carts some stores have. When I was finally able to go home, my bowel had a mind of its own and then the deep depression came over me. I decided I wanted a colostomy, I went to see my neurologist told him what I decided and within 3 days I got my colostomy. It literally saved my life. It is a hassle a lot of the times but I would never go back to the "bowel program".

Life changed for my whole family, not just me. Everyone needs to adjust to the situation not just me. I was told by all the doctors I had coming and going when I was in rehab, by the time 6 months rolls around, you probably won't gain any more body function back. This was all 20+ years ago, I've adjusted and am ok with it. Good luck and your a very good friend. Keep us posted. Sandy

Hi sorry to hear,

I was diagnosed 3 years ago. I had sciatica for months and then one day all of a sudden I was paralysed from the waist down due to my L4/5 disc herniating. I had surgery within 18 hours then rehab for 2 months. I thought i'd never walk again, but luckily i started to recover after a month and with alot of commitment and determination I can now walk quite normal, and have regained control of my bladder, but still have bowels problems and i still have quite a lot of numbness, however i manage to live something close to a my life before, but no physical sport and have to think more about holidays etc . Ive also have had a second child and hopefully more to come.

From what I've learned no injury is the same, and the speed at which the spinal cord compression is removed is key to recovery.

Your friend sounds like she was in a better condition than me, so here's hoping she recovers.

Adam

hi!

so sorry to hear about your friend.

i too suffer from the horrendous after effects of ces and its been life changing.

please inform your friend (if her dr hasnt already) that recovery can take up to 2 years; so its very early days for her. be kind to herself and don't expect too much in the early days.

i'm 4 years post op and have seen small changes. i was wheelchair bound for the first year, now i can take some steps with crutches. so changes do happen albeit small! unfortunately, , my bowel and bladder have remained the same.

i hope your friend continues to recover, but i have found that acceptance is key to overcoming this and having some quality of life back.