Looking for a bit of input. (Is this like you?) Cauda Equina Syndrome?

[Tanya1989]

On May 5th 2009 I had a fusional correction for scoliosis (I was 19 at the time) from T4-T12. Everything went well with the surgery apart from a dural tear and failed monitoring equipment (SSEPs) which was then corrected after a "wake up" test. Recovery went well (albeit a little slow and very painful).
Then here's where it has all gone wrong... On Oct 3rd 2009 I had a fall down the stairs and knocked myself out in the process. Immediately on coming round I had numbness and paralysis (apart from twitches) of the left leg and pins and needles in the right leg, but normal function in the right leg, and double incontinence.
I was taken into hospital and had CTs and MRIs- nothing broken according to them both, but they couldn't rule out spinal cord injury due to the metal work from the fusion.

I was then sent for SSEPs (same as ones I had during the surgery 7 months previous) and they came back "abnormal" and I quote "significant deterioration in both legs, but more so in the left leg"

The spinal surgeons decided maybe one of the screws had shifted and was pressing on the spinal cord. They removed 2 (T9 and T12 left side) in June 2010 but upon opening me up and removing the screws they found it was just an illusion of the CT and they was in fact nowhere near the spinal cord, nor had they created any path suggesting they had moved.

Cue the neurologist- he came to see me shortly after surgery (for the first time) and did the usual reflexes (for which there are none below waist level) and jiggles the legs looking for tone and spasticity (tone normal and no spasticity). And sent me for more SSEPs and an EMG.

I had an appointment with neurologist on 26th July and he did the same reflexes (nothing) and leg jiggling (still normal regarding spasicity and tone). EMG of left leg was normal but no results for SSEPs as I type (although the technician said they were abnormal still, the consultant said he hadn't yet had the results). He is also thinking that the leg problems caused the fal rather than the result of the fall, but is only guessing.

Nobody has an idea what it is thats wrong due to the lack of spasticity and normal tone?

I am considering getting a referal to another neurologist, one in london who is supposed to be leading man to just get an alternative pair of eyes on the whole thing.


I went to the GPs the other day (water infection from catheter) and she has had a report back from the neuro guy.

He is now thinking that maybe the problem is psychological so now seeing a shrink (history of mild depression, but does everyone think I'm mad or making this up?). But no one else is convinced of this and what about the SSEPs being abnormal?

A friend has been doning some research about my symptoms and come up with something about Cauda Equina Syndrome?

[Gary Anderson]

Cauda equina syndrome is what I suffer from. It is basically damage to the nerves as they leave the base of the spine commonly referred to as the "horses tail" because that is what the clump of nerves resembles. The pain from this syndrome is chronic and something that I have suffered from from over 20 years.

If you search back this forum you will find articles that I have written describing this syndrome and what it is like to life with it. I am on constant medicate to control the pain and you have to be careful what you are given as the medication causes side effects.

Believe you me as a sufferer of this syndrome and as a doctor, the pain from this is absolutely nothign to do with psycological pain.

I am not demeaning your pain or the friend trying to help you but you actually require to be told by a neurosurgeon that you have this syndrome.

I would seriously consider seeing a second neurologist and try and have him assess yoru condition. Try not to suggest this syndrome to him as it it is better if he can come up with a diagnosis.

HOpe this helps but if I can be of any further assistance, just ask.

[Tanya1989]

Thank you for taking the time to reply to my post. I am currently waiting on my GP for a referal to another neurosurgeon (based in London- I am Derbyshire and been under Queens Med Centre for all this above) called Mr Simon Farmer from the National Hospital for Neurology and neurosurgery and also Claire Fowler who I believe deals with a lot of Uro-Neuro problems...

Basically my GP has translated the "psychological" dysfunction- wrote in a letter from present neuro guy, as being "you don't fit the normal pattern for nerve problems, so we will call it psychological until we can come up with a better answer".- Apparently he has seen a lot of these type of letters from various consultants for various things for many patients and a couple of years later they had found a physiological reason for it. In other words "the consultant is reluctant to guess whats wrong, so he's passing the buck along".

I'm hoping that Mr Farmer or Ms Fowler will be able to shed some better light on the situation. We are having to go private which will be a bit of a bummer, but at least they might be able to point me in the right direction, which is more than they seem to be doing up here.

Thankyou so so much for replying. I hope to be able to let you know how I get on shortly.

[LW]

Hi Tanya,

'Psychological'? - Oh, that sounds familiar!

I don't have the same condition as you but I know what it feels like when the doctor implies it's all 'in your head'. I also ended up forking out for a private consultation at one point. To put it briefly, my problems started just over two years ago when I started to lose motor and sensory function in my lower limbs (I had been previously extremely healthy and was just 26 years old). My GP put me on a waiting list to see a neurologist, although reluctantly, as he hypothesized that my symptoms were caused by 'anxiety'. Almost 6 months later I was completely unable to move, was plagued by sensory deficits and eventually couldn't urinate. I was admitted to hospital that Christmas as an emergency where the real diagnosis was uncovered. I had a life-threatening spinal cord tumour that was laying over a major blood vessel inside the cord (it was also crushing my left lung and had caused hyperreflexia, amongst other problems). So much for anxiety!

After surgery I was left with no after care despite the fact I was still experiencing major problems (I can now walk a bit though and I am grateful for this). In March I went back to my GP and guess what? Oh yes - he mentioned that word again - ANXIETY!!! Seriously, it's an ongoing battle! To cut an even longer story short I am currently waiting for an appointment with my neurosurgeon as a recent MRI scan has in fact revealed that my tumour has not been removed. Confused? Me too.

I know how frustrating it is when they don't believe you; it can make you feel as though you're going mad. I really hope this new consultant in London can shed some light on things for you. I think a lot of the problem lies in the fact they don't have the answers themselves.

Best of luck.

[Tanya1989]

Thank you for replying as well. I am seriously losing faith in the NHS at the minute. I've spent so much time chasing up test results etc from about 4 or  different consultants, all reluctant to hand them over. Its driving me mad, thats whats giving me anxiety lol!

I just feel like I'm being labelled a basket case.

[chrisarnold]

Hi Tanya,

Doctors do seem to patronise at times, although I am sure they are not intending to give this impression. If you are not happy with a diagnosis it is possible to ask for a second opinion. As to basket cases, I wonder just how many of the hoards who attend surgery really need to see a doctor? This may explain why sometimes the doctor can appear to be a bit frazzled.

My experience in hospital is that when tests are made, an outcome is usually quite prompt - there is no excuse for dallying around.

Chris

[sunny]

Hi Tanya
           I had decompression surgery for cauda Equina in August my symptoms where similar to yours but when I had an MRI scan I had a disc burst into my spinal cord it is an urgent operation where and operation is needed within 72 hours of symptoms present themselves .I'm sure if you have already had mri scan and been operated on this has already been ruled out ? I have numbness in my legs my bum feels it is swollen (like your face after a filling ) I feel like i have a tail too ...I do hope you don't have cauda equina because after being in hospital 3 days with not much going on after I was diagnosed the whole of the hospital seemed to be round my bed ,air ambulances ,and I was operated on 1hr 10min after being diagnosed as if it is longer there is more permanent damage if you have already had mri surly they would have seen it .first time I've left a post not sure what to say but let me know if you want to know any thing about the symptoms etc .
Jane

[Andy]

hi sunny

thanks for your input and welcome to the forum

Andy