Any neurologists? Desperate mum.

[Finallygotmy3]

I am desperate for urgent help UK.

Backstory:
I had an L5/S1 Microdiscectomy on June 13th. Around 2 weeks after surgery I noticed my bowels were not the same and I struggled baring down, much lessened urge to urinate but I can void if asked. No incontinence, more like retention. After attending A&E multiple times Cauda Equina was ruled out as Lumbar MRI clear and I can feel touch. Thats fine but the issues are still there, i then developed a huge amount of flank pain on my right side, assumed kidney, attended A&E, dr said this was all in my head, after begging for help he relented and gave me an xray, this showed huge fecal loading on the right and under diaphragm (cause of pain). I asked the ED Dr if that should prove what I'm saying like the muscles are switched off and things have stopped in my bowels. He said no, constipation was common (no I'm not on any meds, took 2 codeine the day after surgery) and I've never had this issue in my life. Sent home with impaction regime and with senna and laxido things are moving. I was also Tachycardic on multiple A&E entries so they shoved Propanalol at me and told me I had anxiety.

Since then I have developed jelly feeling in legs but again can feel touch and walk, parathesia across my arms and face. Right of face went numb so called 111, obs done again and all fine so sent home. I have chest tightness, breathing at times can be laboured but my oxygen is always fine.

Since then I've developed insomnia (1 hour a night if that of sleep). Never had this issue in my life, all put down as anxiety. Hubby and I had sex for the first time yesterday and I couldn't feel almost anything internally. I stopped pregablin that I was taking for sciatica a few weeks back so thought maybe I was in withdrawal, so I took some 2 days ago and slept a few hours, but last night I haven't slept a wink.

How I feel right now is like I'm losing primitive reflexes/sense. Sex, bowel, bladder, emotions, sleep. This is not in my head, this has all developed slowly, A&E dr refused to refer to Neurology, as has my GP but they seem happy to prescribe a very strong sleep med which I don't really want to take. If it works they won't prescribe anymore and then I'm back to square one.

I don't think this is disc related, but maybe brain and misfiring signals/hormones. I'm concerned there could be inflammation or an underlying infection (bloods normal). I'm in desperate need of help and someone to take me seriously, I'm not mentally unwell, I have physical symptoms the medical community are ignoring and that ofcourse is distressing. Any opinions welcome/help. I can't afford private, I'm sure there are a huge amount of people on here intelligent enough to figure this out. Family are supportive but also kind of stuck on how to help, I'm scared this will escalate as no sleep is obviously not good for the brain or functioning. I'm an intelligent woman, I work 2 jobs and I've had this body almost 37 years, I know it isn't working well.

Yes but I feel more numb, I'm not numb to touch but like internally numb. It's very hard to explain, I honestly feel like my brain is turning to mush or something. I'm at a loss but my symptoms are definitely not in my head.

Is it worth asking for a second opinion at your GP surgery?

I have had anxiety before yes, I've never ever had insomnia though.
I've done CBT and in the night I've tried multiple techniques to drift off to sleep but nothing is working. I've even referred myself to our local mental health service as I'm happy to crack on with any techniques to help but I just feel so bizarre.

I completely understand why that is what people are saying. In the absence of lessened reflexes, strength, or confusion I keep getting sent home which ofcourse I get. A&E is not for people like me but ultimately something is not right at all. Any suggestions if it is health anxiety as to what I can do? They've prescribed zopiclone but that feels so extreme.

Can you ask for a rethink using Jess’s Rule ?
https://www.england.nhs.uk/long-read/jesss-rule-three-strikes-and-we-rethink/

Try the tablets you've been prescribed. A few decent nights of sleep with either prove or disprove your feelings.

It's not that I'm actively choosing not to. Zopiclone is potentially addictive and it feels like an extreme measure and therefore I wanted to try techniques like CBT/military breathing/massage etc first. It is a last resort though I will probably take it tonight.

It also feels futile when my physical symptoms are still present. The issues aren't going away even with a good few hours sleep (this has been going on 5 weeks now).
A few examples i could give:
No longer wake with need to pee (always had this). Put it down to the hot weather initially but I can now drink all day with no desire to go.
Legs are very jelly like, very wobbly to walk on - I've even gone back to work to try grt into a normal routine and I wasn't supposed to just yet.
Definitely couldn't feel sex last night (I can externally but internally nothing).
It's all so strange.

I told the A&E dr that I was desperate and just wanted to speak to a Neurologist. They refused, my personal GP was amazing and understood exactly why I was upset. She reassured me that obviously my muscles are working to void urine so that was all good although sensory might be dulled.
She reassured me that she would help and we could figure it all out.
The next day I called 111 regarding the pregablin as it was out of hours and it occurred to me that not tapering may have caused the issues (I'm open to being wrong on all of this). They told me to speak to GP and wouldn't tell me whether to start them again, so I took some I had in off my own back and managed 5 hours sleep. Took some again last night and zero sleep.

The breathing seemed to work maybe 2 weeks ago with a lot of focus. Massage no, tbh the massage for relaxing me is normally back but obviousky dut to the surgery I can't have a body massage so hubby just did legs/arms/chest etc.

I’ve had surgery.

your body experiences it as trauma no matter how nice the anaesthesia.

my bowels were pretty unpleasant for a good month afterwards. You can do diet stuff and take stool softener to help but yeah it’s pretty excruciatingly painful,

I got wind all over the place as well as they’d pumped my abdomen full of gas to make it bigger and separate out organs to work on, gave me chest pain for a couple of weeks.

most drugs are potentially addictive. You’ve got some very standard problems post surgery and this is what the drugs are for.

if you’ve had nerves disturbed in the operation yes you can lose sensation in various places or get pins and needles or other random sensations from them firing fairly randomly. I lost some sensation after both of my endo ops.

take the drugs. Drink lots of liquids and liquidy food and take stool softener. Lost sensation the docs can’t do anything about but if you are having a lot of random sensations they can prescribe drugs to essentially turn the nerves down.

It is something I will do as a last resort. I think it's reasonable that most people would try a lesser extreme to help first, obviously that's no longer working so I likely will take them tonight.

I don't think medics are wrong as such I just would like some investigating. I understand the lumbar MRI came back fine but bowel/bladder issues can occur through issues higher up in the spine or via the brain. I think persistant bowel and bladder issues for over 5 weeks warrants some help. I didn't immediately become stressed over it. I gave it a week and drank/ate more and they persisted. I then presented to A&E, I then took the laxido and nothing happened, just overflow. Due to how far back the fecal loading was the enema and suppository couldn't be used. It's only with senna things have moved.

I'm a lover of medicine. I went through hell to have my 3 kids via infertility and have a lot of respect for all of those in the field. Ultimately, drs can be wrong though, I don't know why anyone would think I would be fine for 2 weeks post op and then make up symptoms.

Why on earth have you not got back in touch with the surgeons who operated on your back? Of course it's related to that. Get hold of them monday, you don't need a neurologist, you need spinal surgeon review

Thank you for the tips, it's nice to hear from others who were a bit all over the place post operation. I'm hoping that this is all just part of recovery. I keep taking the senna and eating and drinking. I just want this awful time to pass.

I rang them 3 weeks ago, my surgeon is on holiday, so he got "a mate" to hear me out. I was in A&E at the time when this other Dr called me, he said to ask for imaging. They refused. Wouldn't listen to the Dr as he didn't work for their trust. So I went to another hospital who did do the MRI only because my dad and husband turned up.
The Dr then reviewed the images and was happy no Cauda Equina and said speak to the GP regarding the constipation - they have washed their hands of it all.

I have a review with the actual surgeon who performed the surgery but not for another month. They don't seem overly concerned.

That was what the secretary said he said to them. I'm just relaying how they said it to me, it all felt very non urgent. Maybe it is, but scary for me nonetheless.

No. Basically I did the choose and book system for my sciatica, I picked the first available appointment. The Dr seemed lovely and surgery was scheduled. He performed the op at a private hospital but I didn't pay as this was my MSK referral.

Yep i understand, I want to be ok for my family, I have such a mix of emotions because I feel like the physical symptoms are there, which in turn increases my anxiety, which then feeds my brain and sleep. I completely understand the feedback loop and am desperately trying to get out of it but it isn't easy. I'm also concerned the Zopiclone will ofcourse do what its supposed to, then I'll be back to insomnia when my GP won't prescribe more.