CES and chronic back pain
Posted , 4 users are following.
Last August I had emergency surgery for a herniated disc impinging on my spinal cord. I now have Cauda Equina Syndrome and nerve damage causing numbness and weakness to my left leg, buttocks and foot, as well as some weakness and numbness to my right leg. I am lucky that my CES did not leave me with incontinence or sexual dysfunction, though I suffer from chronic back pain.
My recovery went pretty good at first. After two months at a local rehab centre and another month in their outpatient program, I still had the nerve damage symptoms, but I had graduated from a wheelchair to a walker to walking sticks and had even started cycling again. I had some occasional neck pain and my lower back was still a bit weak, but I was strong enough that my OT and physiotherapist began talking about a gradual return to work. I worked as an eco-friendly house cleaner with my partner. We used to work 25 hours a week, but it's hard work, so starting last October, I only went back for two hours a week at first. After three weeks I tried four hours of cleaning, then six hours. I was religiously doing my strengthening and stretching exercises, but at six hours of cleaning I was starting to feel some upper back pain. I tried eight hours the next week and by the end of that week my back was so sore I had to quit. That was early December and I haven't been able to work since then. I now have pain all over my back and three weeks ago my lower back seized up so bad I couldn't move. It's a bit better now, but still really sore and stiff.
I am on a long waiting list to get a CT scan and MRI (April!). My GP and both the physiotherapist and physiatrist at the rehab centre insist my back pain is unrelated to my CES. That seems absurd. I have never had back pain linger this long. It's so painful and it feels so fragile that one wrong move and it will seize up again. What is even worse, I'm not eligible for government disability support. Not even a friggin tax credit.
Does anyone else with CES suffer from chronic back pain? If you do, what did your doctor say about it. Helps to hear other people's stories. There is so little information out there about people living with CES.
Cheers,
Mark
0 likes, 9 replies
chrioli mark1225
Posted
I had a similar thing In that I continued with back pain and got a repeat mri that showed that I still have a piece of disc at the surgical site pressing on the cauda equina nerves. Yes I was treated like I was nuts until my pain specialist listened and repeated the mri. I hope someone listens to you. Also I know what you mean about the upper back because it doesn’t move the same with the lower back and so spasms sometimes. Even worse are the leg spasms I get from fatigued muscles that do all the work now. Keep trying to understand what is going on with your body. And pushing for help.
Good luck!
faye70665 mark1225
Posted
Hi Mark,
I feel so bad for you and I get it! I Sent thru this few 2 years ago in May Mine was too late by the time they figured it out to do much about it.I had become paralyzed from waist down.I was given an IV of strong steroids and I got enough feeling back to walk.Now I can suddenly go numb w/o warning.I now have a large muscle in upper leg that is partially eaten away,sjogren's syndrome,neuropathy,stage2 kidney disease and I am in pain everyday.I belie vs it is worse since this started.2 pain dr.'s,Neuro and PvP all day some of my pain is due to the ces.Follow your instincts always.I hope you find out from your tests.
faye70665 mark1225
Posted
faye70665 mark1225
Posted
d50268 mark1225
Posted
Mark I posted my story here on a discussion this is my story and yes I've had numbness Is anyone else going through this or know the answer to my topic questions ????? And is there anything that can be done without surgery ? ... I'm 37 have herniated discs l5-s1 and cauda equina .. I am pregnant and due in a month in a half .. it's actually so painful .. I've had other children before the cauda equina (just milder disc issues) and was fairly normal and both vaginal deliveries. Recently A neurologist said they were surprised I was still holding up w/o surgery yet . I do pt.and chiropractic which only temperarly help then I'm in pain all over again including the shooting nerve pain . No one could ever tell me with both cauda equina and the disc issues if I'd improve or be worse with my pregnancy , from the begining i had asked alot of questions but all that was said is it could go either way there was no definite answer. I fortunalty havent lost any bladder / bowel function but In these last 2 - 2 1/2months of my pregnancy have been the worse with the discs and cauda equina issues especially in bad weather. And last of all Does anyone know how each case is handled, what if any meds are given especially if you haven't had surgery yet and want to do another vaginal birth if its even possible ????
maryanne45 d50268
Posted
Hi again,
I responded to your post too.
Just had a thought are you bracing with wearing a lumbar support belt to take off any gravity pressure? As Faye above has described a topical working for her. Would there be something you could try to get through next few weeks that would not effect baby? I find a wearable tens helpful and electric heat pad to reduces spasms at night- non medical pain relief. My friend who had spinal fracture also took high dosings of fish oil when she couldn't use the nsaids in pregnancy to reduce inflammation pressure on nerves but you'd have to talk to doc as it can thin blood if you need emergency surgery. Take care
d50268 maryanne45
Posted
Mary... i did reply on my post explaining when the cauda equina started and added a ps.. but I will say this that it really really stinks that while pregnant there's alot of meds, including topical that they say might or will harm a fetus so they barely do or give basic things and rare circumstances they might give something more but it makes things more complicated. Before I was pregnant they wanted me to take I think gabapentin.(only took a few times) then found out i was pregnant like 3 weeks later and was told to stop any meds ..
d50268
Posted
I do wanna get a brace even if it's after the baby I wanna look into all options because as of now everything is all up in the air and don't know where or what will happen but I'm hoping for the best without surgery especially since I have no one who would take care of me and the kids if I do get surgery so I'm praying for a huge miracle....
maryanne45 mark1225
Posted
Hi Mark,
Thanks for sharing your story. My pain & muscle spasms never went post surgery. Sorry to say 4 years down the track and still suffer with all of it. But everyone is different. Yes -There is so little information around CES after the surgery. At first my doctor told me this pain was not from post surgery too and was a chronic pain syndrome or depression but I have a supportive GP and they slowly listened. I went to see a few specialists, had a few more MRIs which did not show much and asked the helpful people on here at 2 years I was waiting for the pain , the spasm to go away and my body sensations in my leg/s to come back to 'normal'. Yes I also find the baclofen helpful for spasm , also various supplement - valerian included.
I have educated myself around chronic pain over the years and recomend if you feel comfortable to find a good pain clinic (they vary) or private pain doc who listens and are not arrogant . If you let it go, the unremitting intractable pain as it can be with CES can take it's toll on the body systems - eg heart if you don't get it in check and try to push through it / ignore too long. It sounds like you have worked hard to get where you are with stregnth and I hope you continue to heal and pain reduce.
My most helpful resource has been this great forum but also a publication that actually names it : 'chronic cauda equina' , names the pain and the spasm and some of the bizarre sensations. It is under 'Arachnoiditis handbook for relief and recovery' by Forest Tennant. Very helpful public resource for me. Everyone is different but just to have a name of the condition given by a doctor to refer to and know it was not unusual for CESers at all, was so helpful - as well as the posts on here and stories shared.
I do spinal bracing - with a support belt for certain activities driving and any sitting or travelling and it fits (with advice from my physio). It reduces 'flares'. This goes against regular back advice and I had found it by trial and error but fits with the chronic ces advice in that arachnoiditis handbook. This was one of the only places I ever found anything to affirm the things I have found in hit and miss over years was in this handbook and the patient forum here. Also things like some activity flares the nerve pain and others dont. Very confusing. Understanding It has helped me navigate the future and feel I can have some kind of life outside my body limitations and its 'tricks'. Sorry if I have ranted but your story sounded similar to my initial confusion with very understanding GP. Please don't let my experience dampen your hope of full recovery. Its great to hear of a CESr that can cycle ! Best of luck in future recovery and learning how to manage your pain if it lingers.