Beginning of CES ?

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Hi everyone. This is my first post and i am terrified i have CES. sad

In a nutshell. I have extreme sciatic pain from hip to toe(groin, him, thigh, calf, shin and foot) on the right side. I can no longer stand up. I am in extreme pain and am losing the will to live. I am due to have decompression surgery in January. My problem is L4, L5 and S1 and my facet joints are too big. My L5 disc is out as far s it can go and according to the MRI is completely compressing the sciatic nerve.

A couple of months ago i developed Foot Drop. I told the Hospital and they didnt say much and now they say its probably permenant as i have had it a few months now. As well as the agony my leg is numb and so is my foot. I have contsant pins and needles and horrible sensations ranging from hot and cold and hyper sensitivity. My right foot is always freezing cold to touch and my feet go blue. I am on Tramadol but nothing works.

In the summer i was admitted to hospital because i felt like i couldnt empty my bladder. I stayed in for a few days and then discharged. It gradually got better.

Occasionally my legs went to jelly and i would slowly fall to the floor. The best way to explain it is that i had 'clown' legs, they went at the hips. I would just crumple to the floor. I was able to get up again after a moment. It would also happen if i went up stairs. As i reached the top stairs my legs would be bent and i had to pull myself up the last few steps. This still happens sometimes.

Last week i got the most incredible low back pain. It came from nowhere. It was right accross my lower back. Previousley the back pain was more to the right lower back, never both. I am unable to leave the house or walk so i dont know why i got it. I dont tend to have back pain when i have sciatica. Its usually one or the other. The pain has been all consuming. Its hard to breathe because every tiny movement is agony. One minute i have no pain in my back, just the sciatica then the next minute its back. Then I fell over on Monday morning and couldnt get back up for about 30 minutes because of the pain. I didnt realise i had wet myself at first. I was horrified. I told my Dr and he sent me to the hospital by ambulance. After having a finger up my bum i was told it was unlikely to be CES but they wanted to keep me in to manage my pain. I dont have a problem with my bowels or have any saddle numbness.

I know all the signs for CES and feel its at the door knocking for me. I am terrified. I have a young daughter who is disagled and am struggling to cope. I have spent the last 10 months sitting on a pc chair on wheels in my kitchen. This is my life, not much but it could be significantly worse if i develop CES.

Can anyone please put my mind at rest. It seems the hospital are not concerned and maybe rightly so. Am i being a bit of a drama queen?

I am so low i keep having bad thoughts. I am dreading the operaton because it may not take my pain away and i couldnt cope with that. I dont have any family anymore and no friends to speak of. I am trapped in my home with no help and no one to talk to.

Thank you in advance to take the time to help me understand whats going on. Sara

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6 Replies

  • Posted

    I have just looked at other stories and it seems that this place is not very busy and some posts remain unanswered from the summer. Have i wasted my time posting here?
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  • Posted

    Sara, you seem to be really suffering - not just physically. I can understand that you are in pain and frightened. I hope by now you have had your surgery and your problems are turning around a bit or you are at least taken seriuosly and investigated properly. Do let us know how you get on.
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  • Posted

    Hi, thanks for replying. I had my surgery in January and am stillin a lot lof leg pain. The nerves were very compressed. I seem to have another concern now though. During the summer where i was getting the leg pain and numbness my foot got very cold, numb and the toes would go purple. After the operation my other foot became the same. I went to a vascular clinic and was told i have very weak foot pulses and the right femoral was very weak too. The left was a bit better. The Dr was shocked at how cold my feet were. I am now waiting for a Duplex scan. The Dr said she thinks i have an autoimmune vasculitis. I have Rheaumatoid Arthritis and am wondering if i have Rheaumatoid vasculitis. sad

    I am still unable to walk as i cannot stand upright because of the leg pain. I havnt found any improvement yet and its getting on for 4 weeks now. Part of me wonders if some of the pain may not have been from the sciatic nerve.

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  • Posted

    I meant to add that after surgery i was catheterised as i was unable to wee and after a few days i was ok and still am. I guess that rules out any lasting damage which is a massive relief. Now i have to worry if i will lose my toes and bits now. smile
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  • Posted

    Dear Sara007

    I do feel for you. I hope by now that your symptoms have improved and where necessary you have had good pain relief. 

    I found your messages when I was seeking answers for calf pain.

    Please persevere if necessary. Make sure you get the best help available if you are still in pain. I hope to hear from you.

    I pray for your healing.


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