5 months pdph c section spinal leak

[Mjmum10]

I feel like I'm going mad. I have had the diagnosis now but I have no end in sight for treatment. How do I cope, I can't eat, sleep or look after my baby or older children. I've been to a and e and admitted countless times but I just get told I'm complex. I have a good neurologist but I'm struggling to hang on in there.

For anyone unfamiliar a spinal leak can happen after an epidural and cause debilitating headaches and neurological symptoms. They are worse standing up and better lying down. It usually heals in 2 weeks but some don't and become chronic (my case)

The hospital finally admitted it, they gave me a csf leak after my c section and didn't treat it early on despite countless visits to triage. They try to claim it's now healed and I'm just disabled, but the symptoms are still positional and I've read about people getting the leak sealed years later and recovering. They just refuse to believe I could be one of those people. The problem is a leak this small won't show on an MRI but it's still enough to debilitate me. It didn't show in July and it won't show now. I feel like I just don't matter to anyone. One Dr told me he doesn't think the way I've been treated is unfair and it's the NHS what do I expect. I've had dr's that understand and have seen this before... But it's 5 months on and I'm just struggling so much. I'm in bed most of the time because if I try to get up it all starts again.

I had one patch that helped at another hospital but I'm still very symptomatic

My head hurts, ears ring day and night and the nausea is brutal. I don't feel like I want to be here anymore but there's no support, perinatal said there's nothing they can do to support me as it's physical not mental. I've just been abandoned and treated like I'm not a mother any more. They've taken my life away

I'm going for a nerve block soon in the hopes it helps and then to discuss a potential patch. If they say no I just feel like there's little hope or prospect at recovery.

I know it's rare but has anyone suffered a spinal leak after epidural or spinal, how did you get treated? This has ruined my life and my children don't have a mum anymore, I feel like I merely exist and bring nothing to anyone's life. I'm just here suffering

My family made me a go fund me that's doing well, we've suffered financially as my partner lost his job and has to care for the kids and me too now as a result of this. I feel ashamed, and like I've let my kids down. Everyone knows our situation and I know I didn't do this to myself but the guilt eats me alive.

Am I being unreasonable that they should fix it? I'd do anything just be the way I was. I can't look after my kids and the hospital that did this to me doesn't care. My new baby has missed out on so much with me

I had a spontaneous leak 12 years ago. Just woke up with it. It went misdiagnosed for 8 weeks. Felt like I was being smashed in the head with a baseball bat whenever I sat up or moved. Lying down was the only time I got relief. Just hideous. I’m so sorry, sending hugs as it’s just awful.

No one was looking for it so I was treated for ear infection, migraine, and then a junior GP who couldn’t think of anything else decided it was a brain haemorrhage and sent me to hospital. Spent 5 days in there before I asked Google and suggested it to the neurologist as a possibility. They looked for it purely because they’d looked at everything else.

Like you, a blood patch would have sorted it if done quickly. As this hadn’t happened I had to let it heal by itself. A blood patch wasn’t possible at that stage as they weren’t able to identify exactly where the leak was. It took 8 months for me to get anywhere near normal and probably 2 years for me to feel like it was a distant memory. I had twinges for years afterwards - few and far between, but thinks like coughs and colds aggravated it. I’ve been symptom free for about 5 years and luckily wasn’t affected in pregnancy.

Still scared of it happening again. I had 2 c sections following this and due to this they would only use a spinal, not epidural.

Just sympathy. At the time I thought I was never going to be ok again, and it was a long recovery. Fingers crossed that you find this heals in time x

Go back to your GP and DEMAND to be referred for a second opinion (it is your right) to a different consultant, preferably at a different health trust. Would your gofundme cover the cost of a private consultation, so you're not waiting any longer than you have to?

I'm so sorry you went through this too it's truly awful. I'm glad you made a good recovery and it hasn't happened again, mine was caused by the spinal itself I don't know if they did it wrong or how it's happened, previous c section was fine.

They should know the location of the leak but the hospital where I had my baby were spiteful as they'd punctured me twice and made a mess, left me to get on with it and were abusive. I had to report a member of staff my suffering seemed to aggravate him. They refused to tell me the location for the patch at another hospital, I might be cured if they'd have told me its been traumatic.

I can only hope they agree to patch it or it somehow heals on its own, weeks of bed rest only calmed it down, then as soon as I try to do anything I end up sick enough to be admitted to hospital 😔

My GP was pointless sadly, he had to Google what this was. Wouldn't give me steroids for sudden sensorial hearing loss, I don't know if the damage the leak caused to my ears is temporary or permanent now thanks to them. They refused to liaise with the hospital and offered no support. It's only today they've actually acknowledged I was right and put on the system this is related to the epidural.

I went private for an MRI and unfortunately my consultant didn't feel he could offer surgical input, I was devastated. They're discussing at MDT but he's of the opinion the leak may not longer be active - it's like the NHS all over again only it's cost me £2000. I was right in June and I know I'm right now, I'm not better and after speaking to others there would at least be a change in the pattern of suffering if it'd healed.

My NHS consultant has stepped up and he's some hope for me, he's excellent I just worry how long this'll take and I have no certainty. If they won't patch the leak I feel the chances of recovery are so slim I don't know how I'm going to move forward. I can't cope currently mentally, there just seems to be very little support for mothers who suffer this complication . I refuse to stay like this but if there's no help available, I don't know what I'm expected to do

You poor woman, this sounds horrendous.

Can you request a second opinion with another GP and referral back to hospital or a different hospital? Definitely use the Go Fund Me for a consultation privately as well.

This is the sort of thing it would be worth writing to your MP and the Secretary of State for Health and Social Care/Women’s Health Minister and the Birth Trauma Association about. There’s a new maternity inquiry being set up and you can highlight how you’re being let down. These leaks do happen and are a risk with epidurals but the way they’re letting you down now is unforgivable.

Please don’t give up and do not feel guilty - you're a great Mum and none of this is your fault. Do seek further help for your mental health too as this situation could well lead to PND. Save some of the Go Fund Me money to pay for a private psychiatric consultation if your mental health declines further.

Good luck, and hang on in there.

Thank you, I'm thinking of changing GP I told them how bad this was and they just weren't proactive in helping... It was a non urgent referral to ent that was all they really offered. I don't enjoy criticizing them but the support was non existent.

I wrote to my MP and reported the situation to pals, I mainly just want them to fix the leak but they got worried I was after compensation I believe 😔 honestly if they fixed me I'd drop anything, I never planned to sue until they withheld treatment and I'd begged them repeatedly for help. I became a 'problem' not a patient. My baby got really sick at one point and they still didn't care, I couldn't be with him whilst he was in hospital and it's definitely led to some PND

I'll take your advice thank you and report it to anyone that'll listen, I'd hate for someone else to be treated this way. It should be something they fix as a priority, I've lost everything and there's still no end in sight. I don't believe I'll be here next year if they don't fix it. The suffering has become too much and I'm slowly watching my life crumble. There doesn't seem to be a quick answer to getting fixed unfortunately..I've thought of writing to some dr's outside the UK to see if they'll help, but I'm not sure I'm even well enough to travel and can't really afford it. If my NHS consultant comes through he'll have saved my life

OP I think I may have had a leak for years which intermittently heals and then comes back. It’s the only thing that makes any sense. The CSF leak association released a video yesterday to raise awareness. Have a look on their website. They advise you can contact a nurse at the Brain and Spine foundation here https://www.brainandspine.org.uk/support-for-you/helpline/ . I hope you get the help you need. I am struggling to walk and sit up all day at the moment and am dreading going back to the GP.

I'm so sorry your also suffering, it's a very cruel condition and people don't realise it makes normal things extremely difficult or impossible. I hope this is okay to ask but do you feel your leak is spontaneous or did you have a medical procedure like me?

I watched the documentary with Dr Bern Hard, it's great more awareness is being spread. I hope the charity will consider sharing more stories soon, a lot of us are really struggling to access treatment and support..I also dread the GP

Thank you for recommending the brain and spine Foundation I'll give them a call see if there's anything they can help with x

Hi sorry I have just seen this. I think it started with the spinal I had when I gave birth. I am not certain I have this, but I have some very odd symptoms including struggling to hold my head up and feeling like my head is being dragged down against gravity among other things. If it is, I think it healed and then leaked spontaneously again. Please don’t think you have failed anyone, this is not your fault. Even if you can’t do as much as you would like, just being there for your children and loving them is so important for them.