I have been red flagged for Cauda equina and nothing is going fast with regards to a diagnosis

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Hello i have just found this site an would like some advise its a long story so i will try and make it short. basically i have had lower back problems going on for close to 20 years muscle spasms, sciatica in both legs not at the same time that resulting in doctors giving me pain killers and nerve tablets that i dont like taking so usually i just get on with the pain when it happens. In Febuary 2017 i had a spasm that was very intense but didnt realy have much nerve pain i ended up getting a MRI and was told i had lost the curvature of the bottom of my spine and needed physiotherapy so with me working i couldnt get to the appointments so i done all the physio at home with some relief and went to gym for a couple of months to strengthen my lower back muscles but i still suffered from spasms at least once a month so had to stop going to gym i cant do any sports any DIY ect. 2 weeks before christmas 2018 i was in allot of pain and had a limp but pushed through it as i couldnt be off work but i woke up on christmas eve 2018 and could barely walk with lower back pain my body was out of line and my right leg was effected with moderate pain so went to docs they gave me gabapentin and this done nothing i struggled on that day then woke up christmas day in allot of pain in my right leg with foot drop i couldnt sit for more than 5 mins i could stand for a little or lie down so i struggled through that day boxing day came the pain was the worst pain i have ever felt my right leg felt like it was getting pulled from my body i couldnt bear to stand on it i was actually crying im a 41 year old man brought to tears so things i have missed i had been suffering for a few months urinary problems where i had to push my urine out or it was very slow and also bowel problems these are still apparent anyway i went back to doctors and they gave me codine no help at all then i had a physio appointment and she seemed worried so that night my doctor rang and told me i needed a back passage examination for cauda equina as i had red flag symptoms but she said she had not done this procedure before she said it seemed fine but im not confident in her asssesment i have numbness in my right foot well pins and needles my leg feels weak i cant go onto my heel and im getting pains in my thigh if i strain it feels like my leg is blowing up also when i had the intense pain in my right leg the nerve pain in my buttock swapped sides but stayed in the same leg and i also found out from my doctor that the first mri i had showed buldging disc at both sides. i have been for another mri and refered to a neurologist but he dosent have an appointment until march 2019 what do i do please help . sorry its not short there is allot i have going on

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  • Posted

    I am not medically qualified, however, if your MRI has revealed Cauda Equina nerve root compression then I would expect you to have surgery; i.e. within 24 - 48 hours of diagnosis.

    I recommend that you go to your GP urgently and press for this.

    Also, it seems to me that given your medical history and presenting symptoms, there is a real prospect of establishing breach of duty, i.e. that no responsible body of GP's or Hospital Clinicians would have failed to arrange decompression surgery at an earlier time;

    Whether earlier surgery would have resulted in a less adverse outcome is a more difficult question.

    I recommend that you consult a Medical Negligence Solicitor with experience in Cauda Equina Syndrome claims.

    Best Wishes

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    • Posted

      thankyou for your reply i have not yet been diagnosed for cauda eqina just red flagged i got a mri within a week and that was on friday and i spoke to the secretary for the neurosurgen on friday afternoon and she said i have an appointment for the 20th of march and if he was concerned it would be sooner i just dont get this im off work and afraid to go back incase i do more damage

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  • Posted

    good to a&e say u can't wee and poo and ur other leg problems. I was left for 6 day I have established causa equine syndrome. I have a colostomy and a ileal conduit wee stoma. I have mobility issues u have the say history as me. I was let down I got 1.2 million in a outer court settlement. I have further problems I would not of had they left my bladder in that at to be removed as it went septic I have had 3 big hernia ops 2 colostomy revisions. I have had c5 6 7 in my upper spine I have spaces plates and cages. and last November I was found to have a full compression of l3 so I had a complete back overhaul stretched spacer decompression rods screws plates and back fusion I and still in very bad pain. it should get better I have severe nerve damage from my 1st compression. that's the short vision I was lucky I was seeing my go about a different problem my weeing he sent me straight to a&e.

    you go to a&e make sure u do don't carry on like u are I was 50 I am 61 now.

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    • Posted

      Bloody hell thats not good Keith when i got a intense pain in my back and muscle spasm last Tuesday my wife told me to go to A&E but i just said wait until MRI as i thought they would let me know that day as it was 9:20am for my MRI but that was not the case i have rang the secretary with no joy as they have not rang me back yet i understand a neurosurgen will be busy but 10mins of his time is no big deal in my eyes to look at results and email his secretary to let me know. i have had pain in my hip (groin) all day today my tesicles are painfull to touch yet i dont know if that is a symptom as i have had a infection in the tube that attaches to my testicle it just seems crazy i cant get an answer my doctor is off until tomorrow so looks like i will be going to A&E if i dont get an answer today

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  • Posted

    I was lucky that as soon as my symptoms appeared my DR sent me to the hospital and i had emergency surgery that day. My cauda equina came on very quickly. I was already in unbearable pain but the heel drop and bathroom issues came on quick. I consider myself lucky but am over a year post op and still not back to normal. Do whatever you can to escalate. Good luck, I know how terrible this is.

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  • Posted

    I wish you the best, Steven. My symptoms set in very quickly and I was diagnosed, and had surgery, within 24 hours. The pain was unbearable and almost brought me to tears. I am 40, and 15 months post OP, and still have neuropathy through most of my left leg and foot. Pins and needles sensation throughout and constant and gabapentin didn't work very well for me. Some of the symptoms you have are very similar to mine. Do whatever you can to escalate this issue with your Dr, you know your body better than anyone else. Good luck, I know how scary this is.

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  • Posted

    Hi Steven

    if you are experiencing these issues you need to present to A&E asap. DON'T DELAY. Any delay could result in perm damage. This unfortunately happened to me. I'm 46 and 5 years since my worst symptoms. However due to medical misdiagnoses then issues with ambulance crew and consultant it took them 8 days to do anything. It does seem that in this country alot of Dr's know the symptoms but not how to handle it. If you are suffering urine retention and loss of bowel / numbness in the saddle area and the most excruciating pain you need to get emergency help. I hope you get the help quickly. unfortunately because of the delay I'm going for my 3rd operation which will be in 3 months time (unless It gets so bad that i present as an emergency) and this time they are looking to insert rods to stabilise my spine.

    Please for your own sake go beyond the GP and go directly to A&E as itsa medical emergancy which your GP should have known and acted on.image

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  • Posted

    Hi Steve, I'm a retired surgical nurse, working part time to make ends meet, when I started having symptoms of numbness and tingling on my feet. I won't go thru the whole history, but when I started having issues with urinating, and had to support my entire weight on my arms using a walker, went to the ER. I was transferred to a hospital with an appropriate neuro-orthopedic physician at 3am and was in surgery by 6am. Cauda equina syndrome, according to my doctor, is a medical emergency and should be taken care of as soon as possible. It sounds like you have a different type of health system than I have, but please do whatever you can to get taken care of. The longer the wait to get decompression of the spine, the longer the recovery. Not being able to urinate is a major health issue. I was very lucky. My ability to urinate voluntarily returned while I was still in the hospital, after 2 weeks.

    My legs are still somewhat numb and I'm restricted to a wheelchair, but with therapy and time, I expect to get better. My surgery was on 12/27/18. Good luck!!

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