Intermittent Paralysis

That must be a scary feeling phdstudent! I haven't experienced that myself and haven't really met anyone else like that either. Did the doctors make any comment?

Hi phdstudent, I also suffer from CES. It's a real pain in the bum, lol. I have never experienced the problems you are having, I think it affects us all differently. Hope things work out for you better than it did for me 

Since last Tuesday, I haven't had another episode of paralysis. However, the pain is almost unbearable and it is constant.I have very brief relief with medication but it is always at least 5/10 and it routinely reaches 9/10. I don't know how to live in constant pain. I still can't walk very far; my legs just 'shut down.' It's like a light bulb going dim then going out; it doesn't matter how hard I try, my legs just stop working. I can move them but they are very weak. Once I've exceeded my limit, rest doesn't really help either. It takes several hours before I can walk again. I am starting to use my wheelchair to get around. With a wheelchair, I can get out of the house. While I am still in pain, at least I am not housebound. I was able to get to my mailbox with my wheelchair. It felt wonderful.

A bit of a rant....Some of my doctors have never seen someone with CES. While no one says so directly, I get the impression they seem to think I should be 'fine' after the decompression surgery. I am told by my GP that he hopes it will just get better with time; he hopes I'll be fine in 8 weeks. My neurosurgeon was quite concerned about permanent nerve damage prior to surgery. However, after surgery, he simply says there is no further role for surgery. When I raise any concerns, he says I should be happy I can walk again. Immediately after surgery, my neurosurgeon only told my father and wife about my diagnosis; he never bothered to tell me.  My neurologist says I have CES; however, he believes my residual symptoms are related to muscle atrophy and he doesn't respond to my concerns about bladder and bowel control, stabbing and burning pain, altered sensation in my left leg, or many other symptoms. He suggested physiotherapy and occupational therapy. Fortunately, I've found a physiotherapist that is supposedly familiar with CES. I am hopeful that he can be helpful. I am waiting to see an occupational therapist. No one from my care team has taken the time to explain CES to me or it's prognosis; I've had to read about it online. I get the sense no one wants to consider the complexity of my symptoms.

For now, I guess I just have to find a way to live my life. I wish someone could explain my diagnosis and tell me what I can expect for recovery. Maybe they don't know.

While my post is a 'rantish', I don't have anyone else around me who really understands my difficulties with CES.

phdstudent, I think you have figured out quite a bit on your own. Not an easy position to be in, when doctors are unsure, not sharing directly, etc.  CES is a complex condition and varies among individuals. The intermittent paralysis is undoubtedly related to inflammation, which is why the steroids were effective. This may improve as you get further out fro surgery, or may remain an issue because of nerve impingement from progressive stenosis and arthritis.  At some point, you may need to choose between function with some pain reduction and the side effects of chronic steroid use. For me, I will be on steroids for the rest of my life, at 15mg daily, and deal with the side effects as I function to my best ability.

My walking is like yours! So, I try to get as much upright time as possible, for the benefits of preserving bone density, improving digestion and elimination, and maintaining good circulation. I choose carefully how to allot my upright time, to accomplish those tasks which I otherwise could not living independently. Then I choose whatever assistive device will help me accomplish what I need to do. For most outings, that means a wheelchair. For prolonged sitting, also a wheelchair, because of managing pressure on my skin and also providing best posture, essential with stenosis and arthritis. Be careful to do pressure relief maneuvers while in your chair, very important as preventative measure!  I wear AFOs to avoid foot drop which could lead to a fall, causing further injury and compromising my independence; they also allow for stable pivoting transfers from chair, or inching along kitchen counter in upright position. When I walk, I use forearm canes for stability, trying to keep weight on legs as much as possible; these hang from arms when you need to use your hands, more efficient than standard crutches or canes.  People will wonder why you use various devices--I do not feel obligated to provide an explanation, but if someone is genuinely caring and therefore interested, I just say I need to know my body's needs and meet them in the best way possible to preserve my functioning well as long as possible.  You will figure out over time what works best for you.

Meanwhile, I think you need to be evaluated by CES-savvy doctors: neurologist, rheumatologist, and pain management specialist.  The biggest challenge is pain management, as there are no easy solutions to nerve pain.  Gabapentin and Lyrica help to a point, but your pain is extreme with so much inflammation.  Steroid may be necessary for some time.  NSAIDs used with steroid are very hard on the stomach, especially if long-term use is needed, so you may need to take med to protect stomach (i.e., reduce acid), and also take care with how you take all your meds (with food).  There are other anti-inflammatory supplements that may help your overall condition, such as curcumin, glucosamine sulfate, methylsulfonylmethane (MSM), and tart cherry extract.  I use all of these, and my rheumatologist--not a big proponent of "alternative" medicine--wants me to maintain this protocol, because with my level (seen radiologically) of damage from RA and the disease which caused my SCI, he is amazed at my level of functioning.  For pain, I upped the dose of a supplement which I took for another purpose, R-alpha lipoic acid.  The trick is to find a dose that is effective--too low doesn't reduce pain, too high can cause hypersensitivity, just right is about as effective as gabapentin without the side effect of brain fog. 

Hoping you can get better care, and find some relief.  There is a lot of information specifically on CES in this forum, and soliciting info from some of those who list CES in their profile may help you further.  I have not been formally diagnosed with CES, but have many of the symptoms with lesions from my disease affecting this part of the spinal cord.

PhD student
It sounds like your nerves are still in a state of shock and you are having some inflamation. Once this starts to settle down you will be better able to physically understand CES and what it will be like for you. It's different for all of us because our nerves are mapped out individualistically and each of our injuries are unique as well. Since CES is rare I think it's why the medical community kind of pass us along without much conversation most professionals only see a few cases and are uncomfortable because it's highly litigious. You will learn the most about it by experience and also conversations here. I hope this helps;)
Chrioli