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"Headaches 15 months after CSF Leaks"

About: Crosshouse Hospital / Maternity care

(as the patient),

In October 2017 I complained of high blood pressure while overdue with first child to the Maternity Ward. I have only ever had one slightly high reading, however I did not feel right. I was hot and panic and dizzy. They said I could come in if I want but to try wait till midwife. Went to midwife the next day and was sent to hospital. I had preeclampsia.

The day after, I was induced. When I was 4cm I was taken to labour ward. My labour was horrendous. The pain never eased off. I found my midwife awful. Her first words were literally epidural? Now on my notes I'm dead set on no epidural. I had gas and air but after many trips to toilet which made my contractions worse I opted for the jag. With no relief and constantly needing to pee and being asked an pressured into an epidural I finally gave in because my midwife was very unhappy I needed to pee again and actually told me I didn't. Before epidural they drained my bladder. She needed another bucket because there was so much! I felt like shouting I told you!

I cried whenever another midwife came in because they were all so nice, I wanted them. She was angry and sat in the corner only asking if I want epidural and not comforting me. When they came to perform epidural she was like the best actor. So supportive. It only upset me more. Getting the epidural I was crying already. I stayed still however they hit I assume a nerve and I jumped. They told me to stay still and I tried to tell them it wasn't me who moved. My daughters dad heard what seemed a disagreement on needle sizes between colleagues. The epidural then had to get checked as I said I could still feel stuff. I had to press the button every chance I got. I was in pain.

At the time of 9cm I was on gas and air as well as epidural. I complained of pressure and eventually someone checked me again and the head was coming out. My daughter came out so fast compared to 22hr labor. She gave me a third degree tear. I was taken to theatre to be stitched.  I ended up experiencing awful headaches and was told I needed a blood patch. I was given my options and decided to do it on the Sunday before going home. I was terrified and crying because the epidural was hard for me and a lumbar puncture is similar. They performed the blood patch and again hit I assume a nerve as I jumped. Two colleagues were also muttering about position and convinced the anaesthetist to change from sitting to lying down. This anaesthetist didn't sound confident in new position. I was told I could move about afterwards even though they were dead set on lying down.

I was discharged eventually after rumours apparently being spread that I was scared and didn't want to go home. Not sure where that came from. After staying in hospital since the Wednesday I was desperate to go home! My spine leaked again at home. During the time at home I missed a step on stairs which gave me pain in my head. I've had pain in the back of my head. Crushing and burning everyday all day since. I can't remember not having a headache since the spinal. Whether my mood is high or low the pain is there. I cannot move my neck well and it causes the pain. I have lost my upper body strength, memory loss, dizziness, anger, no balance. A girl in her 20s who lives on the couch when I used to cycle to and from work, swim in the evening and also work during the day. I scrubbed floors while pregnant. Nothing would stop me. Not even my spinal leak. I was up changing my daughter and breastfeeding despite the excruciating pain. I'm struggling to keep my strength now. I'm haunting by the flinches I had when the needle went in. Haunting by the pain. And haunting by the information I received.

They claim my headaches have nothing to do with my spinals. They also say its down to mental health. I feel like a mistake was made and not that it is just a risk. They said I agreed to the risks when I got it done but I was forced into an epidural and couldn't read on gas and air and jag. Although I did agree. I feel like there has been negligence. When I was discharged a nurse made a comment about my iv needle not been changed. I have requested my files from my stay.

Responses

Response from Attica Wheeler, Head of Midwifery (Associate Nurse Director Women and Childrens Services), Ayrshire Maternity Unit, NHS Ayrshire and Arran

Dear The mother with the headache

I am very sorry to hear that your experience with us was not positive when having your baby in October 2017 and that you are still experiencing pain.

I would encourage you to get in touch with me if you wish to discuss your care further and also to explore what further support we can offer you now.

My telephone number is 01563825441 and I would be happy to meet and go through your care in detail with you.

Best wishes


Attica

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Update posted by The mother with the headache (the patient)

Thank you Attica for your kind response. I have called your assistant and hope to get an appointment with yourself and an anthesist soon.

I'm struggling to get back to neurology as my doctors don't think September was long enough ago to go back even with my new facial pains which A&E think is Trigeminal Neuralgia.

I thought I'd update you with how the original pains been. I've been trying to be more active and stay on my feet or sitting up rather than lying on couch as I've gained weight from medication and being inactive. and I'm having intense pressure in the back of my head and face. The pain is burning and radiating and rushes up the back of my head and sometimes feels like pressure crushing. I am struggling to get up at all anymore without feeling like my heads been hit by a bat or like a scene from a movie when a bomb explodes when I get up. It is sore when I'm bending, coughing, speaking swallowing, turning my neck etc still but alot worse and my head really can't take the strain of the weight of my daughter anymore so I just don't pick her up anymore.

My routine needs alot of caffeine to get up and takes me till about 2pm to manage to get anything done. I have 4 days of mostly lying down then manage 2 days of being more active which will then knock me down for another 2-4days. Its really hard when my mood has been improved alot through we work for families but I'm still stuck on a couch!:(

I look forward to your appointment and any advice or support that can be given. I just want to be fit and healthy for my daughter and not stuck lying on couch.