I think i am getting CES.....

[Dazaa]

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

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

 

[GigaByte]

Hi Sara

First of all welcome to Healthy pages and a big hug for you. You really seem to be going through the mill at the moment. And I am sure you are not being a drama queen! You really are struggling.

You do not say where in the country you live. If you are within reach of Hull there is a brilliant sports injury chiropractor who sorts this sort of problem out with massage and manipulation - I know several people who have been sorted by him and they have all avoided surgery and are back to normal. I would contact your local sports clubs (rugby league, football) where injuries are likely to be needing to be sorted properly and very soon, and ask who their therapist is and for his contact details. I am not convinced that surgery is the answer in many cases - that is what is offered by the NHS - but there are obviously some where it is necessary. If you do see someone competent he will tell you whether you can be helped or whether the surgery is necessary.

There is a therapy which could help your pain called EFT - a tapping technique which has had some amazing results - see here and here. It will also help your worry about your situation and ability to cope - it's easy to do and well worth a session with a therapist who can teach you to do it for yourself.

Wishing you all the best and hope this is resolved soon for you. Love and Light.

 

[Pompal 09.]

Thanks for replying Caroline,

I am in Hertfordshire, a long way from Hull. I was not even able to tolerate physio because of the pain i am in and cant imagine there is anything that can help me other than surgery. I had to have gas and air in the ambulance because the journey was excruitating.

5 years ago i was offered a fusion but i decided i was too young and the surgeon said the operation could make me worse off. My discs have lost a lot of height from dehydration and all age related stull. I also have an anular tear bla bla. I also have a Babinski sign(reflex) on the foot that i have foot drop, sciatic side. My left thumb twitches too and most of my fingertips are numb and tingly on both hands.

If i leave the house i can drive but i cant get out the car and walk anywhere, not even on crutches now. I cant stand up full stop because of the shooting acid burning pain from hip to toe. I have to crouch down straight away or i cant help screaming in agony. All i can do is sit but the last few days i cannot do that now as i am in really bad pain. This last week i am getting extra nerve pain in different places from before.

Can treatment reduce the size of the facet joints as i assume these are not helping with the nerve compression? I didnt think any sort of exercise could restore the damaged disc and get it back where it should be. I find it really hard to properly understand how all the bits of the spine work and what bits do but i think i am no different to most people there lol
My decompression op is in January and they also want to reduce the joints. I am under The Royal Free in London. I googled the surgeon, Mr Dorwood and got my gp to refer me to him. I wish i hadnt now but thats another story.

I really need some tlc more than anything. I am single and lost my mum 5 years ago so i have no one to support me. I am feeling very sorry for myself and keep crying when i talk to anyone but i can still tell a joke. AND its nearly xmas, oh the joys.

I sound like a right whiney cow i know. I am not but i am if you know what i mean. I would rather have open wounds on my body than suffer from nerve pain. At least the pain could be treated but nerve pain is not considered very important because it is not an injury. Gonna stop now before i go off on one again, sorry lol xx

 

[Sea]

Hi Sara .

Have you thought about going to a psychic surgeon??

I have been to see Stephen Turoff and It worked for me (knee ligaments)

Just a thought . ..


x dazzle x

 

[Marky]

Hello there, sorry I can't actually help with your physical health problem, I just want to wish you all the best and hope you get the help you need soon.

 

[OneTiredMama]

Hi Sara, and welcome,

First big gentle hugs! You ar not alone! and not whining at all. I would be mortified if I had experienced the same as you. I live in fear of CES I think many spine patients do, it's like a ticking time bomb in many ways.
I would not advise any kind of physio or manual therapy at all, that can easily make things worse even if you could tolerate the pain. Other therapies may help your mind and emotional sense of well being but when it is such a big physical problem I have my doubts.

I am surprised that they have not called you back in sooner than Jan, that seems a bit cruel to me but every nhs area seems to have different ideas on the treatment.

Do you only take Tramadol? That is unusual, if you take paracetamol with it it increases the effectivesness of the Tramadol. What about anti-inflamatories like Diclofenac? What about pain patches like Butrans? Nerve pain modifiers like Amytryptilline or Gaberpentin?

A lot of us have to survive on a cocktail of mixed drugs to get by, and with the severity you mention I would imagine you need more support medication wise?

I am all for natural remedies but it is very hard to do anything until you get the pain under control and releieve the stress a little.

Sending you lots of healing thoughts and reiki,

xxxx

 

[Roshelle K]

Many thanks to you all for taking the time to read my post and i really needed those hugs.
I didnt think it was wise to have any sort of manipulation that could move something and cause more damage and i spose thats why the hospital have not offered me any other treatment.
I have got to the stage now where i am so distressed and worn out with the pain i cannot function properly. Just my day to day things like filling in a form feels like a mammoth task. I cannot concentrate or focus as the pain is in the fore front of everything.

I develpoped TN, Trigeminal Neuralgia(often referred to as the Suicide disease) in February. I was put on Gabapentin and Tegretol. At the same time my sciatica got unbearable.I was on pretty high doses but it didnt touch my pain. My legs started giving way so i was taken off the Teg as they thought that was responsible. I could not find any side effects with Teg that made your legs give way. I could never find anything in the side effects that would cause that to happen. My legs still give way and i am not on it anymore.

I was taking Neurotonin earlier this year, but again it didnt have any effect on my pain. Diclofenic started to give me tummy pains and mygpr advised to come off them. I am sensitive to morphine and anything with codein in it. When i take Morphine i cannot stop vomiting, even with anti sickness tablets. I have Fentanyl patches but they make me vomit too. I am slim built and am fighting to keep the weight on but its not easy so i dont want to take anything that makes me lose anymore.

I do take paracatemol with the Tramadol. I take about 800/1000mg a day of Tramadol abut i probably take a lot more if i counted them. I take more than the recomended dose of paracatemol but i dont get much benefit.
I do feel like i am just a statistic. 10 years ago treatment and care was so much better and more personal. What the heck has happened to the NHS??!!

I had to stop working 5 years ago as i could not get past the pain and now have to rely on benefits. I dont get why i cant have my operation before January. I have begged the hospital to help me but they wont. When you tell them you are really suffering you can tell they are not interested.
What i really want to know is have i got CES. I cannot last the day without having an accident. I do not know i have wet myself until i check. Its not a lot but enough to need incontinance pads.
Has anyone here had similkar CES symptoms to me? Why am i wetting myself? I never did before, ever. I was fit and healthy and very active. Even on a heavy night out drinking i have never wet myself now i feel like a baby. Is there anything else that can cause your bladder to leak. I do not have any infections or anything.
Can i go to someone and say, 'this isnt right' What do i do?.

I would cut off my left leg with a pen knife if it stopped my right leg and back pain.
I know i sound desperate, but i am.
I used to be such a happy positive person but that part of me died this year and i am left with nothing that i recognise anymore.

Its really helpful that some of you can understand what i am going through and any advise you can give me is so appreciated. xxx

 

[Kiaki]

Sara, I can't offer any help either, but just had to say I admire the way you are coping (even though you might not think you are!). I can't imagine being in such pain for such a long period, it must be so draining.

I do hope you get some relief soon, and no, you do not come over as whiney at all

 

[ellena]

Hi again, if you are wetting yourself or fecally incontinent then you do have Cauda Equina Syndrome and need something done quickly to ensure it doesn't get worse or that no long term damage is done to the nerves. Yousurely need another check? Does your gp know you are still wetting yourself?

Cauda Equina Syndrome - What is Cauda Equina Syndrome?

Have you tried A&E?? maybe a local smaller hospital emergency department?

I was told if I ever wet myself etc to go straight there for emergency treatment.

You know one thing that makes me mad about our problems is that I find it so easy to fight for another but when it comes to fighting for me I end up shaking and jellylike and a victim patient, do you have anyone near that can champion you and fight with you to get something done?

 

[Lacey]

Hi Sara

With you describing more symptoms, this is obviously more serious than I initially thought, and yes, A&E is probably your best bet. Oh and don't play down your symptoms or they'll send you home again. You have already put up with more than enough .

Love and Light to you.