Post by ladylimpsalot on Aug 13, 2014 17:13:31 GMT -8
I have had Cauda Equina Syndrome for almost 3 years. My C4/5 disc ruptured and I did not get help quickly enough, so there was nerve damage. I have a hard time walking, but I walk. I know that there are others here with CES. How long have you had it? What do you find has been the best treatment or therapy?
Hi ladylimpsalot, I've had CES for 19 months now and I'm wheelchair bound, I can walk with AFO's and a walking frame, but only around the house. My bowels and bladder are shot and have no movement below the knees. My CES was left for a week from the onset of symptoms, but by then it was too late.
Post by ladylimpsalot on Aug 14, 2014 8:45:47 GMT -8
I think that a lot of doctors don't know what it is, or the need for speed. I feel very lucky. I did not have any health insurance at the time that my disc blew, so went to a normal doctor and was given pain medication when my feet were so twisted I couldn't walk or stand. The next day I went to the ER and had an MRI done and was sent home. It was several days after that that I called an ambulance. I had my surgery the next morning.
I wasn't released from the hospital for a month. And because I had stairs leading up to my porch they had me going up stairs, with a walker before they let me go home. I still have a lot of pain, stiffness and digestive difficulties (I'm too much of a lady to say I just don't give a s***!).
Butiki, I hope that you continue in your recovery and start being able to walk better. I started out with a walker, and eventually decided to go with a cane. I was finally able to give up even the cane.
Post by ladylimpsalot on Aug 14, 2014 8:51:17 GMT -8
I think that the best thing that I did, was walk. I went to the park with my walker and walked the trail. I got some fresh air and some exercise. I still don't think that I am using the same muscles to walk or stand as I did before the onset of CES and there's a lot of pain. But apparently pain is normal. I never know when the pain means I need to go back to the doctor, or the ER because something else is going on.
I think that the best thing that I did, was walk. I went to the park with my walker and walked the trail. I got some fresh air and some exercise. I still don't think that I am using the same muscles to walk or stand as I did before the onset of CES and there's a lot of pain. But apparently pain is normal. I never know when the pain means I need to go back to the doctor, or the ER because something else is going on.
Don't have CES but I know what you mean with the pain. Don't know if its an emergency or just the damaged nerves screaming for no reason
I think that the best thing that I did, was walk. I went to the park with my walker and walked the trail. I got some fresh air and some exercise. I still don't think that I am using the same muscles to walk or stand as I did before the onset of CES and there's a lot of pain. But apparently pain is normal. I never know when the pain means I need to go back to the doctor, or the ER because something else is going on.
Don't have CES but I know what you mean with the pain. Don't know if its an emergency or just the damaged nerves screaming for no reason
It could even mean it's dead nerves coming back to life!
Post by kilg0retr0ut on Aug 15, 2014 5:17:25 GMT -8
I've had CES just over 4 yrs. I started with a walker and a indwelling catheter. I still walk. The best thing I found to combat CES is exercise(the sweating kind)and drugs.
I am going into my 7th year with CES. Walking with crutches for short distances and a wheel chair for longer travel. I like to push my body, trying new things or retrying tasks I did earlier in life. I did kayaking last month and in a short time my boat will once again float after being in dry dock for 8 years. My wife is afraid I'll fall overboard but I am looking forward to the challenge. Swimming without using my legs may be interesting.
I am going into my 7th year with CES. Walking with crutches for short distances and a wheel chair for longer travel. I like to push my body, trying new things or retrying tasks I did earlier in life. I did kayaking last month and in a short time my boat will once again float after being in dry dock for 8 years. My wife is afraid I'll fall overboard but I am looking forward to the challenge. Swimming without using my legs may be interesting.
Execellent to hear from you Bensan. I found I can swim better pulling my legs behind me instead of trying to kick. Life jackets are also pretty handy.
I am going into my 7th year with CES. Walking with crutches for short distances and a wheel chair for longer travel. I like to push my body, trying new things or retrying tasks I did earlier in life. I did kayaking last month and in a short time my boat will once again float after being in dry dock for 8 years. My wife is afraid I'll fall overboard but I am looking forward to the challenge. Swimming without using my legs may be interesting.
That's exciting! I have been swimming a few times and found that I could do a little bit of a kick.