Could this be cauda equina
ChristmasPuddingAllRound · 10/03/2022 07:20
Hi, I'm looking for some advice and help please.
I have been experiencing back pain since last July which has been getting steadily worse. I am normally very active and fit; everything from running to powerlifting.
From November I cut back on running due to the pain in my lower back and began to focus on core strength and mobility. I tried yoga and had deep tissue massages etc I kept mobile by walking and bike riding.
Nothing worked and the pain began to go down my right leg. In the middle of January I rang the Dr who diagnosed sciatica over the phone and gave me naproxen. This did nothing and after a week I went back. This time the Dr actually saw me, she looked at my posture asked me to raise my leg (I couldn't) and said it was nerve pain and to get some physio.
I couldn't get an NHS physio so got a private appointment but they had a 2 week wait list. By the time I saw then I was in so much pain I couldn't find a comfortable position; the pain went down into my toes. Physio took one look at me and rang the Dr to get a referral for MRI and a prescription for gabapentin. We then arranged a follow up for 2 weeks.
Things still didn't get better and I was told there was a 7 week wait for the scan.
However, at the weekend I nearly passed out due to the pain and ended up in A&E. The nurse examined me and suspected Cauda Equina, the ortho surgeon who then examined me said it was just bad sciatica but they would admit me for scans and to give high strength painkillers.
The MRI shows a severely herniated disc (this is all they told me) which they wanted to manage with painkillers, however, after nearly passing out on the physio they then said they would do a nerve root injection. This has been delayed due to emergency surgery on other patients.
Overnight though I have developed urine retention to the point where they have had to use a catheter. Could this be a worsening of the disc? Is there anything I should be pushing for?
I am so anxious, is there anyone who could help please?
ChristmasPuddingAllRound · 10/03/2022 07:40
Thank you...do you know/think this is something that could develop further after the MRI? mRI was Sunday morning and the urine symptoms started Monday night/Tuesday morning.
I am not normally anxious but being stuck on my own in hospital with no visitors is driving me a bit crazy!
Bagelsandbrie · 10/03/2022 07:42
I think you should tell them how concerned you are and ask if they need to repeat the MRI given your urinary symptoms have come on / worsened since they did it. Hopefully they can reassure you. There’s a lot about CE in the media etc because it’s such an emergency and requires immediate treatment but it is relatively rare - and even standard back problems can cause some degree of urinary issue without it being CE. I hope you get some reassurance today.
ChristmasPuddingAllRound · 10/03/2022 21:01
Hi @PermanentTemporary, thank you for asking. I'm still in and they have increased my pain medication again...I feel like I'm in a zombie like state 90% of the time. The spinal team don't feel that I need another MRI and that the urine retention is due to pain . They seem to think that if they get pain under control I will be fine. I did try to say I had no pain when I was going and that this change had come on since Tuesday/Wednesday and they said nothing would alter that quickly.
There is a chance of a spinal injection at some point. I just want it sorted before I go home so I can take care of my children.
Hope this all makes sense, it's all a bit woozy in my head!
Fancyaunt · 10/03/2022 21:12
Sorry if you've said this and I missed it but have you been catheterised? My friend had cauda equina, and had to have major emergency surgery. Urinary retention was the symptom 111 told him to look out for. I would keep asking them if they had ruled it out and why? If you're catheterised, the urinary retention wouldn't be obvious so they might misdiagnose
ChristmasPuddingAllRound · 10/03/2022 21:34
Hi @Fancyaunt, yes the catheter was put in last night because of retention but they still seem to think it's not CES because the MRi on Sunday showed the herniated disc. I am worried as it has come on since I was admitted but they seem fairly adamant. I'm on my own as they have a no visitors policy and on so many meds it's hard to think straight. I also haven't had a poo since Friday.
Should I be pushing more? They hinted today that if my pain got under control and the physio cleared my mobility they may send me home to wait for the injection...that really worries me as the people caring for my children would not be able to cope with zombie me!
PermanentTemporary · 10/03/2022 21:43
I really do think you should be reassured by the MRI but I'd also keep asking.
A bit mystified that someone on new doses of massive pain meds, with a new catheter and barely mobile, is supposed to be fine to look after their children. How old are they?
ChristmasPuddingAllRound · 10/03/2022 21:50
They are 10 (twins) I will fight them on that...OH works away so some retired friends are looking after them at the moment. I can't add me in to the mix or take on the children on my own!
I am hoping tomorrow will bring positive news! Fingers crossed and thank you for the support; it's rather lonely and isolating in here!
Bagelsandbrie · 10/03/2022 22:41
What pain medication are you on? I’m asking because I take Tramadol for lupus and I find at higher doses I have difficulty recognising when I need to pee! And they can dry you out as well - urine, eyes, vagina etc etc. Opioids can do that to you. In some ways it might actually be the painkillers themselves that are causing you issues.
ChristmasPuddingAllRound · 11/03/2022 06:40
Oh, that's interesting @Bagelsandbrie. I'm not on Tramadol and nothing else feels dry. I'm currently on a cocktail of gabapentin, morphine, diazipam, codein, paracetamol and some stuff to get bowels moving. They have just done obs and are getting people up so I'll see what happens with morning rounds. Thank you
ChristmasPuddingAllRound · 14/03/2022 18:53
So, I felt I should update this in case anyy comes across it whilst they are searching for answers or if anyone who commented was interested in the outcome!
After increasing my pain meds to try and manage my symptoms that way, and putting the catheter in, the drs then decided I also needed an enema (not pleasant especially when you can't sit!)
On the Friday another Dr came and I felt listened to me, he decided that as the urine symptoms started after the first MRI that he would call for a second one.
This wouldn't happen over the weekend but I was first on the list for Monday (today). Once the Dr saw the MRI they said the bulge had increased but it still wasn't cauda equina. Within 3hours I was in surgery having the spinal injections; these were uncomfortable and having to lay on my tummy really hurt but they are done and I'm back on the ward recovering.
Physio will need to sign me off and they want to make sure I can go toilet properly and then hopefully I can be discharged home with a follow up in 6 weeks!
Fingers crossed I'm one of the ones that the injection works and lasts for!
Thanks for the help and advice.
anotherdaynotanotherdollar · 20/03/2022 08:23
Hi OP, sorry to hear you've had such a shit time of it. Please continue to listen to your body and advocate for yourself. If you get numbness or altered sensation around your saddle area, or if you loose control (or go back in to retention) of your bladder/bowel or have weakness in your legs go back and get rescanned.
I've had CES 3 times and I would not wish the lasting symptoms on anyone. I very much hope
your injections work, but you're clearly at risk from CES, so make sure you don't hang about if you're concerned about anything.
Best of luck to you
ChristmasPuddingAllRound · 29/04/2022 22:30
Hi @anotherdaynotanotherdollar , not sure if you meant me? I'm at home and still maxed out on painkillers. The hospital want to try more spinal injections again so I am waiting for a date. They mentioned surgery but as the waiting time is so long they want to try injections again. I'm still in pain even on the medication which worries me.
anotherdaynotanotherdollar · 30/04/2022 10:35
@ChristmasPuddingAllRound sorry I did mean you - fat fingers!
Some of the medication you will be on will take some weeks to properly kick in (like gabapentin etc) and unfortunately most other meds are not much good for nerve pain. It's a horrible place to be and you have my full sympathy. Hopefully the disc will move enough to give you some relief soon 🤞
MrOllivander · 30/04/2022 10:40
Push to get on the list for surgery anyway. I had cauda equina and had surgery but I would have had it without CE as they said the disc was so bad that injections wouldn't have worked
That way you are on the list, and don't be afraid to say you will take cancellations for appointments at short notice
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