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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Suspected spinal leak - waiting 7 hours and counting

60 replies

HollyLondoner · 29/12/2023 09:10

What a mess! I have had extreme back pain and migraines since having my c section. I have 7 spinal blocks as they struggled to get me numb. I have been having spasms and extreme pain in the site.

The GP told me the pain would go away and the migraines are hormonal. I paid to see a physio who says she had the same experience and said I should urgently go to A&E.

I called 111 who sent me to urgent care where I waited for 6 hours. I was then told to come back at 8am to an urgent day centre who sent me to A&E. A&E sent me back and the centre have sent me back to A&E. What an absolute joke. The Dr said I have suspected spinal leak which is very serious and I am in extreme pain and keep asking for pain relief but nothing. Any advice!?

OP posts:
Original poster
HollyLondoner · 29/12/2023 12:23

They've told me to go home!!!!!!!!!

No scan, no anaesthetist, no drugs!!

I've cried my eyes out and begged and that's not very me.

OP posts:
Original poster
HollyLondoner · 29/12/2023 12:24

They've told me to call my GP for pain relief. I'm in shock.

OP posts:
TheWildRumpyPumpus · 29/12/2023 12:37

That’s not good! What has your GP done so far? Painkillers won’t touch the sides if it’s spinal fluid leak.

MistyWitch · 29/12/2023 12:38

While at the hospital call up maternity and explain that you are experiencing some concerning symptoms and a spinal leak has been mentioned after your c section 5 months ago. Tell them you are in A&E but have been told to go home without any kind of investigations. Ask to speak to the duty obstetric anaesthetist.

Im presuming the A&E you are at is in the same hospital that you had your section? If not, go there.

Original poster
HollyLondoner · 29/12/2023 12:38

I'm genuinely in excudiating pain. Can barely walk. They said to call my GP as they can't give any medication. Since when can't they give you any drugs to take home? I'm outraged that they won't check me

OP posts:
Original poster
HollyLondoner · 29/12/2023 12:40

@MistyWitch good thinking. It is in the same place, yes. I did try the midwife unit first and they said they can't see anyone post partum but it's worth another call.

OP posts:
MistyWitch · 29/12/2023 12:41

Definitely worth a call and remind them that they have a duty of care and if it is a spinal
leak and they refused to see you they will be liable.

SirVixofVixHall · 29/12/2023 12:41

They are sending you home ?? I am shocked OP. This sounds horrendous.

Cmonluv · 29/12/2023 12:42

Ask for somewhere to lie flat, if you have a cafe leak then the pressure in your head will be low hence the horrible headache. Lying flat will help.

Original poster
HollyLondoner · 29/12/2023 12:43

Yes they've sent me home. Just waiting to be picked up. I'm appalled.

I've called the GP and they said someone can call me back as a medical emergency but I don't know what they can do apart from maybe give me some pain relief.

OP posts:
Cmonluv · 29/12/2023 12:43

Also your GP needs to call neurology and ask for an urgent neurology referral, not appropriate to send you via a and e, or it wouldn't be in Scotland.

Mummyme87 · 29/12/2023 12:44

Sorry you’re having a shit time. It won’t be related to your spinal 5months ago, a Dural leak caused by that without treatment will heal within 2weeks typically. Onset of symptoms will be within 72hrs typically also.

Cmonluv · 29/12/2023 12:47

Mummyme87 · 29/12/2023 12:44

Sorry you’re having a shit time. It won’t be related to your spinal 5months ago, a Dural leak caused by that without treatment will heal within 2weeks typically. Onset of symptoms will be within 72hrs typically also.

Sorry but that's not necessarily true, I have patients for whom there have been recurrent leaks.

Mrsttcno1 · 29/12/2023 13:03

HollyLondoner · 29/12/2023 12:38

I'm genuinely in excudiating pain. Can barely walk. They said to call my GP as they can't give any medication. Since when can't they give you any drugs to take home? I'm outraged that they won't check me

Unfortunately they can’t really give you any drugs to take home without having fully assessed you. Hospitals have really clamped down on this to prevent people presenting just to gain access to strong prescription drugs. That said, you would think they would find the time to actually check you with your symptoms!

Definitely call your GP and see if they will provide an urgent referral. We did this recently for a family member after they sat in a&e for 13 hours only to be sent home and told to contact GP because as we were told “a&e is for accident and emergency only”, once they decide you’re not an emergency they send you back to GP. It’s not that they don’t think you still need medical attention, it’s just that they are not the ones able to provide it. Contact GP ASAP, as I say we did this for a family member and within 3 hours they were at the same hospital for an appointment the GP had organised x

uncomfortablydumb53 · 29/12/2023 15:28

I'm sorry you're in this position
They've treated you terribly
Could you ask your GP to speak to the on call Neurologist at the hospital
( I know they used to do this) and also request strong pain relief
You shouldn't be just left to struggle

Original poster
HollyLondoner · 29/12/2023 19:55

My GP called and managed to see me tonight which was very kind. He did more in 5 minutes than anyone else! He's referred me for an MRI scan and booked in physio for me for next month. At least something was finally done but I'll definitely be complaint to pals after the last 2 days of madness!

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Exasperateddonut · 29/12/2023 21:03

I had the same a few years back. They never got to the bottom of it and I’m still affected by pain at the epidural site, muscle spasms and excruciating pain and numbness intermittently. Was told just to live with it and it can’t be anything to do with the epidural.

Do not let this happen to you. Your GP sounds more on it. Good luck.

Original poster
HollyLondoner · 29/12/2023 21:06

@Exasperateddonut wow can you imagine if this was a men's health issue! I'm so sorry to hear what you've been through.

I was pleasantly surprised by my GP and hope they can help after a scan. You should never just have to put up with excruciating pain! ❤️

OP posts:
uncomfortablydumb53 · 29/12/2023 21:27

I'm so pleased for you that your GP was so helpful and I hope the MRI gives you some answers
Did the GP give you a prescription for pain relief too?

Greybeardy · 29/12/2023 21:53

HollyLondoner · 29/12/2023 21:06

@Exasperateddonut wow can you imagine if this was a men's health issue! I'm so sorry to hear what you've been through.

I was pleasantly surprised by my GP and hope they can help after a scan. You should never just have to put up with excruciating pain! ❤️

men do get dural puncture headaches too.

Original poster
HollyLondoner · 30/12/2023 04:19

@uncomfortablydumb53 thank you 😘.

Yes he gave me a prescription for codeine too which is helping ease the pain a little.

OP posts:
Cmonluv · 30/12/2023 04:36

Much less frequently than women AND when they happen they are much more likely to be taken seriously and investigated. Noone ever tells a man a headache is hormonal, particularly new onset ones. They are much more likely to be referred to neurology and offered imaging despite the fact women's headaches are more likely to be caused by raised or lowered intracranial pressure than men's

Similar to gallbladder issues, women wait much longer to be referred, assessed and treated than men do. They're more likely to be doubted on pain severity and spend longer being just offered pain relief.

Although Definitely better to be a white woman with these symptoms than a woman of colour statistically! Or a white woman with pre eclampsia or other pregnancy complication if you want to be investigated and survive.

Medical bias is well documented, let's not pretend it doesn't exist

LifeBeginsNow · 30/12/2023 05:15

I'm going to save you the 3-4 years of agonising pain, missing out on my son, being fobbed off, left with life long mobility issues (nearly paralysed) and bring told I had 'anxiety'... call 111 and tell them you've wet yourself. That's cause for serious concern and will be investigated.
I know it's not right but neither is being left like this. You need an mri and to be put on a pathway of the right care. How will you function to look after your son? Trust me, I was in the same position. I cried every day for years because of the pain it was so bad.
Just say somethings changed, you've now wet yourself and had no urge to go. Good luck and I hope you get some relief and better care soon.

Teder · 30/12/2023 09:34

LifeBeginsNow · 30/12/2023 05:15

I'm going to save you the 3-4 years of agonising pain, missing out on my son, being fobbed off, left with life long mobility issues (nearly paralysed) and bring told I had 'anxiety'... call 111 and tell them you've wet yourself. That's cause for serious concern and will be investigated.
I know it's not right but neither is being left like this. You need an mri and to be put on a pathway of the right care. How will you function to look after your son? Trust me, I was in the same position. I cried every day for years because of the pain it was so bad.
Just say somethings changed, you've now wet yourself and had no urge to go. Good luck and I hope you get some relief and better care soon.

All that will do is get OP back to A&E!

bailey999 · 30/12/2023 09:43

If they suspect Cauda Equina she will get an MRI that day (not saying that's the right thing to do)