Perimesencephalic haemorrhage with EVD

[RuthB]

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 EVD?

 

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

 

Thank you,

 

Ruth

[ClareM]

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

 

[subzero]

 

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

 

 

[RuthB]

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.

[Chris G]

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 then 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

[RuthB]

Thanks Chris, really great to hear your story.

[RuthB]

If anyone reads this, even months or years later, please do send me a message. I'd love to talk to you x

[Winb143]

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

 

 

[iola]

Hi, 

 

I did have the same  as you but without EVD.  Was in hospital for two weeks and then home and terrified.    Give yourself time.  However, I did the same as you and went back to work too early.   I had terrible headaches but was so afraid if I did not use my brain it would forget to know things, or turn off because it thought it did not need it.

 

What I failed to realize is my brain needed to relax too.  Time to rest.  After five years I am still trying to balance.  

Slow and steady wins this race!

 

iola

 

[RuthB]

Thanks Iola,

 

Yes I know that feeling - i was so scared i was doing the puzzle page in the newspaper all the time.

 

5 years ago - it must have been a long journey. Would you be up for a little chat some time?

 

I'm feeling so much better now, but it does tend to be a little up and down.

 

Ruth

[Lori D]

Hello, I had a NASAH a little over two years ago. I had an EVD put in for about 3-4 weeks. I also suffered bilateral ischemic strokes two weeks post bleed due to vasospasm. My original bleed happened 2 days postpartum. I have seen several specialists- some say perimesencenphalic, some say postpartum RCVS. Neither fit due to size/location of my hemorrhage. They say pattern/size/location look aneurysmal- but I’ve had 5/6 angiograms and no sign of anything. They said my bleed looked like a “massive aneurysm” ... but nothing. 

 

Like you, I have recovered quite well. I am back at work full time. I still struggle with attention, some short term memory, mood swings a bit, and very occasional weird migraines. It is encouraging to talk with someone who has gone through something similar.   

 

I’m curious if your doctors gave you any limitations or meds to avoid? 

 

-Lori 

[RuthB]

Hi Lori, wow what a mad time you have been through, and postpartum too - I can't even imagine. 

 

Your experience sounds more complicated than mine (I have only spoken to one person who had a similar haemorrhage to me, and I have tried to find more people). Mine was just the one bleed, the EVD, and then zero follow-up, apart from a meeting where I got told not to worry. So I'm not on any meds and he didn't give me ANY limitations. He actually said to me I'm in a better situation than the general public, because they have had a look inside my brain and nothing is lurking there.

 

I find it hard to put my finger on what is left over from the brain haemorrhage, and what is normal - I think I get tired and overwhelmed more easily, and sometimes I worry about my short term memory. But otherwise, I think I'm PRETTY similar, but also, it is hard to remember. ha ha.

 

I hope you get some answers, it sounds tricky not actually knowing what you are dealing with, Have you managed to find someone who had the same sort of experience as you?

 

Ruth x

 

 

[Lori D]

Ruth, 

Sorry for my delayed response. For some reason, I don't always get notified with people's posts. 

 

I couldn't agree with your third paragraph more. I do get overwhelmed more easily, struggle with some short term memory.. but then also wonder if that's just getting older, haha. I also find it sort of hard to explain the differences/struggles in general. 

 

I would be frustrated with the zero follow up! That's ridiculous. However, if they have definitely diagnosed perimesencephalic, recurrence is definitely rare. So I guess that is reassuring. However, I have found through this whole experience, you most definitely have to be your own advocate for your health. 

 

I have found a few women with similar stories, (postpartum SAH) but nothing is ever exactly the same, or our neurologists say different things. So it's just so hard to pinpoint. 

 

Thanks again for your response, and hope all is well. 

 

Lori 

 

 

[V.Mama]

Hello Ruth B

 

My husband had a non aneurysm sub arachnoid haemorrhage on 20th May 2019.  He got hydrocephalus on day 3, had a drain put in day 3 until day 16, then a couple of days on the ward, transferred to our local hospital, then home 19 days after NASAH.   It seems so simple to write now, but it was living hell at the time for him.  I felt like I literally held his hand and kept him from floating away all those weeks, his grip on life was so tenuous.

 

He is making a very good recovery, he has been told he will make a 'full recovery'.  He is returning to Sydney to see his neurologist and have a MRI next week, for his first check up since he came home.  Hopefully he will be permitted to drive again as his neurologist told him he couldn't until reviewed.  

 

He was told when he left hospital that he has no deficits, however I notice little differences, but nothing major.  Like you, they are hard for me to put my finger on.  Probably a little bit more forgetful, but it doesn't impact negatively on his functioning.  He has some down days, which is to be expected given what he has survived.  He get fatigued the next day if he pushes too hard, does too much, thinks too much, or socialises a lot.  His headaches are a lot better, but I notice again if he overdoes things he gets more headaches.  

 

We are incredibly grateful to be together, and each day is a blessing and a gift for us.  We realise that time is so precious.  

 

I'm glad you've found this forum, it's been a huge help to us and I'm sure it will be for you too.

 

All good things for you

 

Veronica