Has anyone found a doctor who actually understands what CES is and can offer practical help?

Posted , 6 users are following.

cannot stand on my toes so cannot push off when I walk. The muscles in my legs hurt when I stand and when i walk because some are paralyzed or just weak and other muscles are over worked.So many doctors try to treat me like I have foot drop but I have the opposite problem.Even a prosthetic specialist sold me a very expensive orthotic for foot drop because she did not understand that I did not have foot drop but needed something to help me push off and did not listen when I told her my problem. I use forearm crutches to walk, my doctor suggested a walker, so I went to the internet for help and found a really good pair of forearm crutches made in Canada. US doctors just push walkers. I also have bowel and bladder issues, but I would like to solve my walking problem first, sick of being indoors all winter because of my lack of balance.

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  • Posted

    Have you had surgery? I was diagnosed in my bed in 2minutes by a very good doctor. Sent to a@e with a letter saying check for ces, but I met a dope of a doctor who sent me home. You need surgery and good aftercare, ie neuro Physio, urologist. Pain consultant, etc. donal 
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  • Posted

    Hello Rose12440,

                                 I have same issues, and find it depressing staying indoors so much,fortunately i can drive (automatic) and take my wife shopping but other than that i`m pretty much stuck. I have bought a wheelchair on the internet but am embarrest to go out in it.

    Doctors have never diagnoised me as  CES but i know i am.

    It`s a long term thing and we need to keep positive, and knowing other people are suffering the same as you helps. I wish i had my old life back but it`s not going to happen so try and touch base like this will hopefully lighten the load. I will keep exercising as much as i can and use my crutches to get to the car and stuff.

    Summer is just around the corner so you can at least get out in the garden, i dont know if this helps, but it`s my story so far,  Mike


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  • Posted

    I suffered from CES and it's been 3 yrs now. But my physical therapist understood my situation and what I needed. Actually, Hanger Orthotics casted me an AOF brace which is made of a hard plastic. This molded brace allows you walk and normal. Because, it goes under you foot and the brace does not bend. You will need one like this because of the fact of not being able to stand on your toes and lack of muscle strength.

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  • Posted

    Hello Rose12440,

    I was diagnosed by my neurosurgeon. He performed 2 surgeries on me and referred me to his preferred urologist, GI and hysical therapist. They communicated all the time eith my neurosurgeon to understand the severity and together develoled a treatment course accordingly. I recovered complete control of my bladder but still have some unbalance and bowel issues, but nothing compared with my situation before. I think that when it comes to CES, the Drs need to work collectively guided by your neurosurgeon.

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  • Posted

    If you have red flag symptoms your GP should be making a very urgent referral to hospital for an MRI

    Patients with back pain should be aware of the following "red flag" symptoms that may indicate CES:

    Severe low back pain

    Motor weakness, sensory loss, or pain in one, or more commonly both legs

    Saddle anesthesia (unable to feel anything in the body areas that sit on a saddle)

    Recent onset of bladder dysfunction (such as urinary retention or incontinence)

    Recent onset of bowel incontinence

    Sensory abnormalities in the bladder or rectum

    Recent onset of sexual dysfunction

    A loss of reflexes in the extremities

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  • Posted

    Have you been given reasons for your cauda equina? If you have not got them, you should get a medical investigation done by an expert (and there are not many of them.)

    If you are in the UK, see Mr Panicker at UCLH in London urgently.    If you have an MRI make sure it is with dye to spot compacted blood vessels.

    I am just catching up with how poor the medical profession is in cauda equina problems. I have had symptoms similar to what you describe. I have just realised mine is likely to be caused by compacted blood vessels ...looks like the reason the nerves are impinged is compression at the bottom of my sacral spine which does not show on a normal MRI. Every time I walk on a hard surface my symptoms get worse..and the reason I think is compression around my sacral spine. The nerves exit the spine and run down the side of the vertebrae to the leg. Impingement in the sacral spine can cause impingement of all nerves from the sacral and lumbar spine and it can and does cause havoc.

    Good luck

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