Gill's Story

‘It’s not life threatening!’

This starts on Tuesday 27th April & goes on for quite a while.

I worked during the afternoon as usual but had a stand up row with someone which is quite unlike me at all, but I was just sooo angry!

I came home, made tea & was sat on the sofa watching tv when my neck started to go stiff on the right side (I sit with my feet curled up next to me so I’m not postured very well). Then the left side of my neck started to crunch up & felt like it was turning into concrete. I was worried as my Dad had a stroke & I knew a stiff neck wasn’t a good sign. I took an Ibuprofen & it eased off, so I went to bed. Woke up the next morning & went to the loo for a wee twice with no problem. Went back to complete the process & suddenly got this huge pulsing pain behind my right eye, which felt like my eye as going to burst. Shakily made my way to the bed & phoned down to my husband to come up, by the time he came up I was rolling on the bed in agony. He asked if he should ring an ambulance, but I said to ring the emergency GP which he did. I couldn’t, as I was in so much pain but the GP insisted, so I spoke to him & asked if it could be sinusitis because I was congested & he said it was possible, so I queried the amount of pain & he said it was unlikely.

We got in the car & went down to the GP & he examined me & asked about the pain, he shone lights in my eyes but apart from the pain I seemed fine but he was still concerned so rang ahead to the local hospital medical admissions unit.

Back into the car & then to the hospital & down the long corridor to medical admissions with the letter from the GP. They put me on a bed & asked about the pain which had now dulled to a sore eye & headache, but it was still worse than anything I had had before.

I waited a while & they put up a Paracetamol drip & took some bloods, then a junior Dr came & examined me & took my details. They did all the tests for strokes, lifting my hands above my head, baring my teeth, smiling etc & all was fine, even the shining of lights in my eyes. He asked about rashes & bruises of which I had none & he disappeared off.

About an hour later I started to get a migraine aura & they gave me a cloth to put over my eyes to cut out the light. I stayed like that until the Consultant came (hubby was walking Nathan around the hospital during this time to keep him occupied) & asked how the migraine was. It was better although the head pain was still severe. She examined me too, her manner was very abrasive & abrupt & I didn’t like her at all. She told me she thought it was just a migraine although I knew it wasn’t & then she told me they didn’t want to do a CT scan on me because if it was clear, they would need to do a lumbar puncture which would give me a headache anyway & as I am overweight the risks were far higher ( I remember thinking surely with the pain I was in they should have investigated further just to be sure)

She also blamed my weight for the migraine & said I should lose some (as far as I am aware the two aren’t linked). She also made me strip my clothes off to examine me with the implication that because my hubby was there that he was a wife beater & I was intimidated by him being there & wouldn’t tell the truth about my problem. I can appreciate that that can happen, but hubby was there because I couldn’t drive & there was no one to look after Nathan for us. Plus hubby was happy to go off & leave me to be seen in private. I think there are far better ways of approaching things & her manner was very rude, she told the junior Dr off for not physically examining me too, poor lad.

I went home still in pain & positive it wasn’t a migraine. I knew for definite it wasn’t when I tried to sleep as the pain was far worse when I lay down. The next day I went to my GP & she prescribed Diclofenac & I went to work that day & for the next 10 days. I visited the GP again that week & was given sleeping tablets as I found the more tired I was the worse the headache was. By Friday I noticed my right eye felt dry & greasy but by Saturday it felt worse, so back to the emergency GP again. I’d been told I had muscle spasms by my own GP up to this stage & my neck was still sore, so I’d booked some physio with the lady who specialised in headaches. On the Sat the GP diagnosed cluster headaches & an eye infection & gave me antibiotics & Amytriptline which was the only way I got enough relief at night to sleep. I was told whatever I had, wasn’t life threatening & sent away (how wrong can you be).

By Monday my eye was dilated & I had double vision, we were meant to be taking Nathan to Paultons Park for his birthday that day, but I ended up at the eye clinic. I was in agony with my eye & all the lights being shone in it made the pain much worse. They didn’t seem to have a clue what was wrong but sent me for an urgent CT scan & mentioned an MRI. The results of the CT came back clear but the Consultant was furious when I told him no lumbar puncture had been done last time I was in & he tried to get them to do one, but as I’d been discharged for 2 weeks I would have had to be readmitted to get that done. I was sent home with no idea of what was wrong to wait for a MRI scan.

Still in pain, but sleeping better.We had a phone call to book a CT scan (which I’d already had) & then they rang back to book the MRI with a 17 day wait (this is urgent!) so I tried to ring our local BUPA to get the scan done privately. At a cost of £500 per scan we thought it would be worthwhile so went back to the GP to get referral done, the GP didn’t refer me straight away so there was another delay in being able to book the appointment & then some confusion about was needed. In the end it turned out that a brain & blood vessel scan counts as 2 scans so would have cost £1000. By this time I was sleeping better & in less pain (I hadn’t been working since my eye started to go). We decided to wait for the NHS scan – all the while assuming it wasn’t life threatening because no one was acting with any urgency. The scan day came & I went through it in a state of terror (I am claustrophobic) & pain, the pulsing on the right hand side made my head & eye ache even more. Glad it was over I went home again assuming that if they found anything they would contact me quickly. By this time my eye wouldn’t open at all & was virtually totally dilated so was painful to open in bright light anyway.

Eight days went past with me still in pain & going back to the GP for more tablets & she tells me it looks like I have a bleed. Two GP friends also say the most likely thing is a bleed but no one contacts me from the hospital until 8 days after the MRI. The phone rings at 8pm & my hubby answers then passes the hone over saying it’s the eye Consultant. He tells me they have found something, but doesn’t go into detail other than to say it looks like I need surgery & that Wessex Neuro want me to go in on Sunday with a view to operating on Monday. He mentions coiling but nothing else & not having had a major operation before, I am terrified, but have no idea how serious my condition is.

Saturday morning we get phone call about 11am from the sister at Wessex neuro telling me to come straight in there & then, as it’s safer for me to be there than at home if anything happens & that they want to operate on Sunday! I hardly have time to take it all in before we pack a bag & in we go. I arrive at Wessex & have to wait for a bed, they take bloods & I burst into tears over the nurses as I am now aware that I am in a serious condition & am worried about not coming out of the op the same person. They are very kind & reassuring. My bed becomes free & I get changed, they send me for an angio, it’s freezing down there & it takes about an hour to get the pictures they need, I don’t feel any pain but get weird feelings in my mouth & flashing lights behind my eyes as they move into the different blood vessels to the brain. When it’s over they have problems stopping the bleeding from the angio site & they draw a big circle on my thigh to show the extent of the bleeding just in case it gets bigger (about 6” across & it takes weeks to disappear)

Late that evening the anaesthetist comes round, even thought the surgeon still hasn’t been to see me, he runs through the medical history & stuff & then later still, Mr Sparrow comes to see me & gives me the facts of my condition & that he wants to clip the aneurysm the following morning at 8.30am. I have another surgeon who come & mentions coiling & says that if I want coiling it can’t be done until Monday & they won’t be able to tell if I’m suitable for coiling until the surgeon comes in. I am torn but the thought of 6 monthly angios puts me off, so I opt for clipping.

The next morning they take me down abut 8.45am & I remember going down but nothing else until waking in recovery to see the nurse who went down with me & saying ‘have I been done?’ & she replies’ yes you’ve been clipped’. I don’t remember going back to the normal ward but I felt like I’d been trampled on by a herd of wilde beast so I ask for pain relief & they give me Oramorph which tastes sweet & ukky. They offer me a cheese & tomato sandwich which I don’t want but I’m really hungry so I eat it. My hubby comes but I don’t remember much other than feeling sick & then throwing up.

They tell me I was then taken to HDU with a vasospasm, but I don’t remember it at all. I remember being in HDU & hating it as no-one introduced themselves or talked to you or fed you at meal times. I only remember having 3 meals in there & finding it difficult because they wouldn’t sit me up, They spent 4 hours one night trying to get the long line in to monitor my BP as they were giving me Gelofusin to stop the vasospasms. I have about 30 needle marks on my wrists and arms from failed attempts & in the end they had to put it in my clavical artery in my shoulder. I was on lots of fluids & Gelofusin for days. I don’t remember much else apart form needing the loo & having suppositories & then not being able to stop going & the nurses sighing when they had to change me & the bed for the 5th time( no dignity at all).

I think I was with it the whole time, knowing what day it as etc but hubby says I was slurring & dribbling & forgetful, I really don’t remember. But I was conscious unlike most of the patients in there so I was eventually moved back to the normal Neuro ward after a week. I was still on Gelofusin & fluids & still on complete bed rest. For the first time I saw my staples & scar which was scarey but the pain in my eye & head had gone so I didn’t care.

I did have a period of numbness on my left hand side which lasted a few days until the Gelofusin took effect, felt like my skin was covered in clingfilm or I had surgical gloves on so my sense of touch was numbed. I was scared this was going to be a permanent thing but was reassured by the surgeons that the feeling would return & it did. I trusted them implicitly, after all they saved my life! This period of numbness lasted whilst I was on the normal ward too & my hubby was the most worried about me like this as I slurred a lot, dribbled from the left side & I forgot things I had done or was told minutes before.

I could get out of bed & walk (which I needed to do a lot with drinking 3 litres of water a day) so the numbness wasn’t too bad but I was sooo tired all the time. When I went in for the op we were supposed to be going on holiday 3 weeks later & I was told there was no reason I couldn’t go so I go an unrealistic view of how long recovery would take. No way was I ready to to anywhere at the end of July & even now, 3 months on I struggle to cope with more than 4 hours of being out & the school run completely exhausts me. Listen to your body is the best bit of advice for anyone with a SAH or SAA. I think I have achieved a lot since my op (have been discharged from neuro clinic) but still feel like I still have a long way to go but it’s a step at a time for me now.

I spent a further week in Neuro D & the care was great although not all the nurses were empathetic.I worried a great deal I wouldn’t get out of there, a shower tired me out completely so how would I manage with a lively 4 year old? I had my Trans Cranial dopplers done & was glad they were low, the next time they were considerably elevated & my going home was put back & I was distraught, I had missed my sons school visits & won’t ever forgive myself for that. On the Monday the Doppler man came round & I had tried really hard to do my 3 litres of water & sat with bated breath for his results, if they had come down I knew I would be going home or at least to the hospital nearer home. The results were good & I asked the Doppler man if any of his patients had ever kissed him & he looked embarrassed & said no! I didn’t kiss him but I was so happy I felt like kissing him. My surgeon read me the riot act about my weight (done in a much better way than the Medical Admissions Unit Consultant who was just rude) so I know I have to lose weight. Now almost 3 months on I realise how dangerous my situation was & it’s frightening that that first Consultant did nothing & it was misdiagnosed by several GP’s & I was even told it wasn’t life threatening when it clearly was.

I also know how lucky I am to get a surgeon to come in at a weekend to operate on me as an emergency. I’ve been told by a GP friend that spent a year at Wessex that normally you get the registrar at a weekends. The skill of the surgeon means I am still the same person more or less, completely exhausted a lot of the time & my eye is still not 100% better but the alternative is unthinkable. Emotionally I think I am a wreck, I have a Neuro Psychologist appointment in October which I hope will help me deal with that side of things, but I m so grateful to be there & to see my sons first day at school.

Thank you Wessex Neuro & Mr Sparrow!

My aneurysm was 6mm on the posterior communicating artery & has been occluded with 2 clips, the aneurysm didn’t burst but I did suffer vasospasms during the operation.