I am a new poster, but have been reading peoples posts for a few months and have gained a lot of useful advice from other peoples experiences!
In February 13, following a couple of months of very bad sciatic pain, my husband Mike had an MRI and was diagnosed with a herniated disc L5/S1 which was pushing onto his sciatic nerve. His GP gave him some painrelief medication and suggested physio as 'these things normally correct themselves within a couple of months'. Mike is a self employed painter and decorater so had no choice but to carry on working.
By June the pain was so bad he could no longer carry on working, he struggled to walk and had numbness in his left foot, he could not straighten his left left or stand up straight and had been unable to sleep in a bed for 3 months as he couldnt physcially lie down. He was referred to a consultant who put him on the waiting list for a spinal injection and was told 3-4 months waiting.
In August we went on 'holiday' to Spain and whilst there he collapsed as he lost all the strength in his legs. He was admitted to hospital for 4 days and they gave him the spinal injection there. This got him back on his feet enough to get back to England but still in considerable pain. We managed to get an emergency appointment with the NHS consultant again and explained the deterioration in his condition. He can only walk for a few minutes, he can feel the need to go to the toilet but cannot actually control the flow he has no feeling to push etc, he has no feeling along the side of his left foot, constant pins and needles and is now having to control the pain with Morphine, Pregablin, neoproxin and oramorph!! The consultant recommended the need for a discectomy but said he wasnt classed as an emergency and there is a 4/5month waiting list!!
It has been just over a month since that meeting and the effect of the medication has changed him so much, he is struggling to concentrate enough to even hold a conversation at times. He hasnt worked for 4 months so obviously the financial effect has been devastating to us as there is no sick pay for the self employed!! He can't drive so is dependent on others and has lost his independence. We have a 6 year old daughter who he now cant even take to school anymore as he struggles to walk her to the gate. To sum it up our lives have been taken over and turned upside down by this but apparently we are not classed as an 'Emergency'!!
We called the consultant's scheduler yesterday to be told that he is not even on the list to receive a date yet as his case load is so heavy that the 4/5 month wait will probably be more like 6 months!
We are struggling to know what to do next! Do we see about getting referred to another hospital - or will that just put us at the bottom of another list?!? Losing a full time wage means we cant even consider going private - I just feel lost so any advice would be greatly appreciated :confused:
Many thanks for reading! Helen x
I feel your pain, i really do. Your husbands condition sounds all to familiar and being self employed, if you have red my posts you will know i am too. He will be entitled to Employment and Support Allowance, it is a minuscule amount, £71.70 per week i get but it is contribution based so dependant on the National Insurance contributions your husband will have made during his time self employed. I would certainly apply for that if you have not already done so.
Secondly, what part of the country are you from? You crucially mentioned that when passing urine he does not feel the sensation of actually going?? Also if he experiences and numbness in the genital or rectal areas this most certainly IS an emergency, he could be showing the early signs of Cauda Equina Syndrome, and id be surprised if the surgeon had not raised this with him. If waiting the 6 months is out of the question, maybe make a visit to A&E and play on the Cauda Equina in the hope they operate in days as opposed to months. It may mean telling a few porkies, but i would not be taking t he chance if i had any loss of bowel movement or loss of sensation when peeing.
I truly wish him and you a speedy recovery!!
Rob x
Thanks Rob we will definitely look into the Employment and Support Allowance as something is better than nothing!
We live in the Midlands (Staffs).
Cauda Equina Syndrome is something I had been concerned about too. When we met with the consultant he did not seemed concerned and said the symptoms for that condition were more serious than what Mike is experiencing. When he loses control completely or cannot actually go at all - then it is considered a problem and to contact him if this happens. In other words instead of preventing the problem from getting to that point they are happy to let his condition worsen and then treat him as an emergency! It seems from what I have read that the only real chance of moving things along quickly is to do as you suggest and go via the A&E route and sadly this is somthing we now are seriously considering.
Thanks for your response - Helen x
Welcome Helen!
Dear Helen.
As Brillo says, this sounds very much like the onset of 'caudia equina syndrome' and in spite of what that 'stupid' Consultant told you, these bowel & bladder issues are 'red flag' indicators.
It sounds from what you say, that his condition 'is very serious & severe' and whilst I accept it is not 'strictly' life threatening, all it needs is for him to fall in a bad place, and well!!
Please Helen, go back to the GP tomorrow and demand an immediate consultation with the Best Spinal Surgeon in your local Spinal Unit, and don't take no for an answer!
Please, let us know how you got on?
SPINELF
IYou crucially mentioned that when passing urine he does not feel the sensation of actually going?? Also if he experiences and numbness in the genital or rectal areas this most certainly IS an emergency, he could be showing the early signs of Cauda Equina Syndrome, and id be surprised if the surgeon had not raised this with him. If waiting the 6 months is out of the question, maybe make a visit to A&E and play on the Cauda Equina in the hope they operate in days as opposed to months. It may mean telling a few porkies, but i would not be taking t he chance if i had any loss of bowel movement or loss of sensation when peeing.
I truly wish him and you a speedy recovery!!
Rob x
I haven't been able to feel 'going' since my accident in 2009, I was warned all about CE when I first went to the docs as an emergency, and then realised that I was numb and told them panicking, but the docs say what do I expect with damaged nerves!
BUT there is a difference in that permanently damaged nerves can apparently block the sensation and do not mean CE but if it is the spinal nerves that are newly pressurised under a herniated disc etc and that can be relieved then it should be an emergency but numbness on it's own they don't seem to worry about. Now if I was pooping and peeing without control they say I would be admitted immediately. Lovely!
Go back to the gp and make a noise!
I asked my doctor what would be considered an emergency
After suffering with damaged discs for over 30 years
Numbness in my pelves and left leg, sciatica etc
I was told, "when you lose control of your bowels"
Good luck
I haven't been able to feel 'going' since my accident in 2009, I was warned all about CE when I first went to the docs as an emergency, and then realised that I was numb and told them panicking, but the docs say what do I expect with damaged nerves!
BLOODY HELL CASSIE!!!
I didn't realize things were that bad!!!
I'll PM you in a day or 2 or we can catch up and put the world to rights, Okay Dokay!!!
XXXXXXXXXX
SPINELF