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daylay1

Hello: I am David

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Hi everyone, I had a coil embolisation for a double SAH @ Walton Neuro 2 weeks ago. I was discharged after 7 days but I am holding up. Great to have found this page so I can see how everyone else is coping. I don't think it has really sunk in yet as I feel like I am in a dream state but I am grateful to be alive. Thanks for letting me join.

 

I had the first SAH on the 4th November with all the classic symptoms. I ignored it and just carried on as usual. On the 8th I went to see my GP and before I could finish describing my symptoms he said he was calling an ambulance. I explained I could not go as my dad had just had a heart attack and was in hospital and my mum has dementia and I am the primary carer.  He refused to let me leave and made me wait for the ambulance which arrived 4 hours later. 

 

I was admitted to the Royal Liverpool for a suspected SAH on 8th November.  I had a CT Scan which came back negative.  They kept me on A&E for  2 days and explained they needed to do a LP to see what was wrong.  They said they would do a blind LP on the ward and  not to worry. On the 11th November a Doctor and a registrar attempted the blind LP and jabbed away at my spine for about an hour with no success.

 

On day 12th November I believe I suffered a second SAH as I experienced all the symptoms again and I was vomiting for 2 days straight so much so that I was placed on an IV drip. My average daily blood pressure was around 195 / 130.

 

After waiting 7 days (still with no diagnosis of SAH) they did the LP with X-ray (which confirmed SAH) and within hours I was blue-lighted to Walton and the next day I had a coil embolisation for 2 SAH's (3 mm and 4 mm)

 

I was discharged after 7 days. I was  full of opiates, scared and confused and got a taxi home alone. I was given a booklet and told to call if I had any problems.

 

I joined a few support groups and started to learn what had happened.  I am a Teacher by trade and I have a habit of making notes all the time and I kept  a journal all the way through from admission to discharge.  This has proved invaluable because when I described my story, people were horrified that I had to wait 7 days for a 5 minute LP to determine 2 x SAH.

 

So here I am 16 days post op and it still has not sunk in.  A member of a group contacted me and gave me the number of a solicitor who immediately took on my case for clinical negligence regarding my time at the Royal Liverpool Hospital.

 

My family think I am ok because I am out and appear normal.  But I am not.  I have seen the statistics for SAH and wonder how I made it through. Whenever I wake up I touch my face to check to see if I have had a stroke.  I am terrified that it will happen again and feel stressed out all the time.  Plus I went straight back into carer role for my parents.  Yes I am grateful to be alive but this is not easy.

 

Thanks for reading my story and thanks for letting me join. 

 

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Hi there

 

Its hard when you have family responsibilities that you need to resume but equally try to change the previous routines you had so there is time for you to rest and reset. If you make a meal, rest afterwards, if you go out, rest afterwards,... you get the picture. And set is sitting quietly no distractions,put on headphones if you need but  just be still and quiet. I expect you are still on regular medication and that will make you feel dreamy as well. 

 

I think get to your GP and make sure they have you in the system and also see if there is a Headway near you, it may be helpful, 

 

Things will probably reveal themselves to you about how you are feeling in the coming days, weeks and try to listen to your signs. It's good you have kept a diary and as a teacher you will be curious about what has happened and that will help you explore what works for you, there are lots of great threads here which you may find useful 

 

I'm sorry if you didn't get the help immediately. SAH is a rare medical emergency and experiences of forum members varies and sadly not everyone gets the fast diagnosis. That said we are still the lucky ones as we are here and most don't survive an event so my advice is try to focus on recovery, something good in each day. As Win will let you know stress is no good for the brain post bleed so try to look forward but take baby steps.

 

 

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Hi David and welcome to BTG.

 

Sorry to hear you've suffered a double sah but glad you have found this site so early into your recovery.  I'm sure you'll find lots of useful information on here as you read the various posts and will be able to relate to things that others have experienced during their own recoveries.

 

I had my one and only sah on 8th November, 9 years ago - I too was delayed in getting treatment -, from ringing for an ambulance myself on 8th, I eventually had my coiling on the 18th with several missed opportunities on the way.

 

Recovery is a very individual thing but taking one step forward and two back is quite a common occurrence during those first few weeks, months and beyond. 

The rest between activities that Daffodil mentions is so important - so many of us are caught out by thinking we've had a good day, felt normal, achieved a lot, then wham we feel like we've been knocked for six and within a day or two we feel so wiped out, we can hardly do anything at all.  None of this is easy especially if you have others to care for, but it's well worth it in the long run.  

 

Wishing you all the best,

Sarah

 

 

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Hi David,

 

I really do feel for you having to go back into a carer role after what you've just been through, being a carer isn't easy at the best of times. We are all here to listen if you ever need to blow off any steam.

 

It took a long time for things to sink in for me as well, it's a major thing that has happened and it just takes time to get used to.

 

On the up side sounds like you have a great GP, as Daffodil said SAH's are rare and most GP's would not have recognised the symptoms.

 

The great thing about this site is that everyone here knows what your going through, we can all relate, your average person won't know what an SAH even is, so this is a great place to get that support

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Hello David,

 

I used to sing songs as I thought my next step was I will die !! Talk about happy lol 

 

My Daughter found this site and I saw people on here laughing and getting on with life which helped me no end.

 

Behind the grey has helped me realise there is a life after SAH,  went to Kings College hospital and saw the surgeon who done my Op and he told me "No Stress whatsoever"  so life is full of it so I sing when feeling stressed !!  I remember nothing from op until I had shunt put in for hydrocephalus  over a year later.  

 

Get yourself sorted and get on with life or I'll sing  !! 

Regards

Win tone deaf xx

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