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Hello everyone, I am so happy to have found this place!! I have felt totally alone with this for the last year and a half, and put a lot of pressure on myself to just get back to normal.

 

I had my perimesencephalic subarachnoid haemorrhage in May 2017, and then developed hydrocephalus, so had an EVD in for 8 days. I was in hospital for a total of 11 days, and went back to full time, energetic work in the September. Now I can see it was way too early, but all I could find at the time online about this type of haemorrhage was that the prognosis was really good. I didn't see any stories from other people.

 

Now I would love to talk to other people who have had the same thing - to hear their story and about how they recovered; to compare and contrast basically.

 

Have you had a perimesencephalic subarachnoid too, ideally someone who also had the IVD?

 

Please let me know, I would so appreciate to hear how the journey has been for you.

 

Thank you,

 

Ruth

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Hi Ruth

 

Welcome to BTG, glad you found us, sorry it wasn't earlier in your recovery. I too had a NASAH with an EVD but it wasn't perimesencephalic mine followed more of an aneurysmal pattern which was why they were convinced it was due to an aneurysm.

 

I have recovered well without any major issues, I just have a terrible memory and am always tired. Physically I am fit and exercise regularly. I was running when I had my bleed and have managed to get back to that, I have completed the Great South Run twice since it happened something I am really proud of. Odd but running makes me feel less fatigued - it clears my brain ;) 

 

I think fatigue is often an ongoing issue. The Nurse Specialist at the unit I was treated said it can be a lasting legacy and just something you learn to live with. Have you tried to make some adjustments since your sah as that is key in recovery I think?

 

I hope others post here, there are many NASAH members who will have stories to tell. I know Chris from across the pond is one and he like me is  a runner :) 

 

Clare xx

 

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Hello Ruth … and also a warm welcome to BTG.  While we do not give medical advice, there is so much helpful information  within this site for you to consider.

 

Knowing that you are not alone is a tremendous encouragement in itself. To help you in your quest for information.. please key `perimesencephalic` in the search box at the top right hand corner of the Home Page and you will find many threads of interest.

 

You mention returning to work in your busy employment.  This is always a challenge for everyone. It is so important that you stay within the realms of what your brain and body allow.  No doubt you have found out the consequences of pushing yourself too soon and too hard. How are you finding work at this point ?

 

Always rest well and keep yourself hydrated by drinking plenty water.

 

Others will share their experiences with you … and please continue to share any doubts and concerns you have with your recovery.

 

I hope you have good support from your family, friends and work colleagues.  The road to recovery is different for everyone and those around you do not always appreciate the seriousness of what has happened to you.

 

 

Subs

 

 

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Thank you both - yes, I am starting to read other people's words about their haemorrhages, but i would love so much to actually talk to a few people.

 

Work was OK but now I have started to actually listen to my tiredness, and I am realising just how tired I am, I just pushed really hard for 6 months, working intensely and 6 days a week mainly.

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I had a NASAH with an EVD.  I was in the  hospital for 10 days, so very similar to you.  It's been over 3 years now.  The recovery is slow and bumpy.  You will feel better than go down again.  There will be weird headaches, fatigue, maybe some memory issues, maybe some eyesight issues, possible mood swings, etc.  It just takes time and patience.  People cannot see your injury or that you are trying to recover, so it can be lonely, even for those who know about it.  

 

Please hang in there and be patient.  I do not think I will recover more than I have.  So my long-term effects are some short-term memory issues and some days where I just feel down.  But I bounce back after a few days.  Other than that, I am close to what I was.  

 

Wishing you the best.

 

Chris

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Hi Ruth,

 

Never give in, I had an SAH4 and was told I'd never walk again and the PT's advised my hubby to put me in a home, which hubby said no to them  !!! Pulls a face at said Physios  lol I never did like them lol  !! Cannot remember them to be honest

 

I can walk 300 to 400 yards on a good day but on down days I do nothing !!  Apart from have a sleep !! but the only physio they gave me was hitting a balloon none  of this I remember as had hydrocephalus, had a shunt put in and awoke and hubby told me what happened  as I never knew. 

 

I am so glad I awoke and am able to tell my baby who is 40 plus lol how much I love her in between rows.  I found this site and realised there is a life after a bleed. Well my Daughter did and I saw women who could smile again and then another and this is when life doesn't stop after a bleed. 

 

Wishing you all the best and my answer to all ills is sing and smile as much as you can  xxxx 

 

Good luck Win alias Winb143  xxxxx

 

 

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