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Not a SAH afterall....


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Hi all,

 

I received some interesting news shortly before the weekend, which I thought I would share on here. Mainly for interest sake and in case anyone has any further information/experiences to share....

 

Turns out for the last 14 months both myself and my medical team have been labouring under a misconception - I did not actually have a SAH. 

 

Since I had my bleed last January I have been under a medical team who have been investigating the cause of my bleed. This is in part due to my young age (27 at the time of the bleed) and the severity of the bleed. Having had a number of tests and scans they have now come to the conclusion that my bleed as not actually a SAH at its outset but rather a Intraventricular Haemorrhage - i.e. a brain haemorrhage that started in the ventricles of the brain. As the bleed was so large it spread into the subarachnoid space and the source of it was obscured on my initial scans by the amount of blood which is why they thought it was a SAH.

 

I have done a bit of research into Intraventricular Haemorrhages and have not turned up a huge amount of information. It does make sense that this is what I had as I also got hydrocephalus after the bleed and required a shunt, although a SAH can also cause that. They are wanting to do more tests and another angiogram to look for any abnormalities in that area, especially in light of the spinal surgery I will be having come the summer.

 

Thought I would post on here though - and just when I was getting used to having had a SAH!

 

Gemma x  

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Woah Gemma, what a roller coaster few months you have been having. I can't imagine what that news meant to you but I hope that you continue to get great care and support from the medical team as they explore a bit more about what that means , where next in recovery terms and how they can help with the spinal issues that you have been left with.

I am wishing you the very best you know I am . Keep on keeping on!!

Daff x

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A roller coaster sounds about right - it just never seems to stop!

 

The news was quite unexpected as I had obviously thought I'd had a SAH. It does make sense though and the bleed spread to the subarachnoid space - it just didn't start there. The medical team have been excellent though and are definitely looking at all angles. There does seem to be less information out there on intraventricular haemorrhages than SAHs, but maybe this is due to the likelihood of them occurring?  

 

I have more scans booked in next month and am then seeing the spinal specialist at the National again. I know he wants to do the spine surgery before the end of the year so I guess we will be gearing up for that next. I am currently on my phased return to work so the plan is to get as far into that as possible and then sign up for whatever suits me for September - I know it will be part time, I am just not sure of the distribution of hours/days yet. Am also still waiting on my driving license and am going for a disability driving assessment as my rehab and GP are pretty certain I will need to learn to drive a hand controlled car. So that is also going ahead too.

 

Thank you for your best wishes Daff. Hope you are doing well xx       

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Well Gemma,

 

All what Daffs has said ditto.

 

Best to get it sorted, before back op.  Hope you are well and at last someone is listening.

 

I wish you well and keep us informed on how you are getting on xx

 

Good Luck Gemma and if you need to talk we are here xx

 

Win xx xx

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Hi Gemma

 

Read your post with great interest as it rang a bell with me. I went back and checked my discharge notes and there it was. My diagnosis was;

1; Subarachnoid haemorrhage (spontaneous idiopathic)

2. Intraventricular haemorrhage

3. Hydrocephalus

 

Looks like the blood was in my ventricles too but not sure where it was first, presumably in the subarachnoid space. but maybe that was not so as mine was also a large bleed. Unlike you I was lucky that I did not need a shunt and have not had the other problems you have had the misfortune to suffer. I never got to see the neurosurgeon after my discharge, just the Nurse Specialist. I would quite like to have seen the surgeon to ask  more questions but at the time was so out of it that I just accepted the appointment I was given -   it's easy to look back afterwards and say 'I wish'. Not to say the Nurse Specialist was not good, she was marvellous, just wish I had had the 'brain power' to ask more.

 

I wish you well with your phased return and the return of your driving licence. Funnily I am now thinking of getting rid of my car. I cannot drive to my new job as there is no parking and know from my 9 months not driving that I can manage on public transport. I will still have access to my husbands car and don't tend to go far on my day off so feel it it a waste of money my car sitting on the the road all week!

 

Keep us all posted

 

Clare xx

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Hi Clare,

 

That is very interesting to hear. I got the impression that Intra-ventricular Haemorrhages and SAH are connected and can occur together and that seems to be the case. I have also not had my next appointment with my Neurosurgeon yet so when I do I will be asking them further questions about it.  

 

I think seeing a Neuro-specialist nurse post SAH seems quite common at a lot of hospitals as that what I had post-SAH as well. At my first appointment I was still a bit too shell-shocked to get much from it so maybe they are a bit too soon after the initial SAH. My specialist nurse has also been really good though.

 

I hope your new job is going well for you? It is interesting as you do adapt to not having a car as my husband and I have as well. I know in the long term I will need one again though as there is no public transport where I live. Hopefully the disability driving assessment will go well and a hand controlled car will be a viable option.

 

Gemma xx

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Hi Gemma,

Gosh, wow, a lot of new information for you to take in.

My ventricles were full of blood too, I also had hydrocephalus, no shunt needed, I had clipping surgery for SAH.

 

Have to say that my Neuro Nurse Specialist has been great, and she continues to be all these years later. I am in fact seeing her in a few weeks time as I've been having some issues.

Thought I'd also mention that about 18 months after my surgery I felt ready to hear more about what happened to me, so she went through everything with me, from the moment I was taken into A&E, she went through my records step by step.

 

This really helped me to fill in a lot of the blanks as I lost about a week of memory.

Good luck with your upcoming appointments.

Take care,

SarahLou Xx

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  • 2 weeks later...

No, I have been very lucky with the amount of aftercare I have received, both in terms of medically and also rehabilitation support.

 

I think most of the medical care was down to the fact that I had a shunt fitted and they wanted to check that every 6 months at first to make sure it was still working ok. That meant that once I started to develop the spinal issues I was already under a consultant who could assess me and refer me on as necessary.

 

I have quite a few appointments coming up in the next few months - I have been referred to a host of specialists as they are trying to work out why this all happened to me. The specialists I have seen can't quite believe that I have the congenital heart defect, had a large brain haemorrhage (with no apparent cause), got hydrocephalus and then got arachnoiditis and arachnoid cysts on the spine. All of these things are quite rare so they do not know of another case where they have all occurred in one person. I think they are looking for a genetic link between them.  

 

I had a full brain and spine MRI last Saturday down in London and got chatting to the radiographer. He told me that arachnoid cysts are usually congenital (i.e. there from birth) and therefore it was possible that I already had them on my spine but they were not causing an issue until I had the haemorrhage and got hydrocephalus. He says he would love to have an MRI of my spine from 10 years ago as then he would know for sure.

 

It was interesting to chat to him as he raised some interesting points which I will bring up with my consultant in June. The June appointment will also be the point at which I find out if the plan is spinal surgery or monitoring for the next few months. I am hoping for the monitoring as I would rather not have the spinal surgery, but we shall see!

 

Gemma x

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My lower back hurts Gemma and it stops me walking, I was told it was my weight but I've always been big but never this big.

 

In a wheelchair when out but indoors I get by ..going to look up your back thing and mention it to Doc lol xx

 

You be Well Gemma and smile xxxx When you feel like it it stops the blues xx

 

Win xxxxxxx

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That's the one who told me it was weight associated, but I know it isn't as I've always been ermm pleasantly plump..lol

Okay big boned ..okay fat xx

 

They are not listening to me and I get so annoyed I gave up on them xx

 

I do think it has something to do with my SAH xx

 

Thanks for reply Gemma hope back gets better xxxx

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I had a shunt fitted and a drain in my brain (excuse the pun there) but didn't get after care like you did.  There is no cause as to why it happened to me, get on with life, and that's what I do..

 

Well done to you though keep us updated...

 

Take care

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Yes I find the amount of aftercare slightly odd - they seem very concerned with finding a cause if they can. I think it is partly because I had the haemorrhage during heart surgery and will require further surgery in the future as well. I am actually not that bothered about finding a cause - I think it is probably just one of those things. As you said Louise, getting on with my life is my main priority. x

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  • 3 weeks later...

Sometimes professionals just can't find the exact casual location of a bleed when it is diffuse or large.  Blood often causes the ventricles to enlarge, the CSF contains blood, and the blood may or may not be confined to a given space like the Subarachnoid.

 

That's why there is all these specialized terms that doctors use to describe the best they can where it all happened.  Because we want to know, the professionals try and find out what happened for us patients.  In some cases, mine included, there isn't the specificity to figure it out precisely.  In any case, the recovery is similar.

 

Good luck recovering from the bleed.

~Kris

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  • 3 months later...

Hi,

 

I am new here, so I will have to complete an introductory post, but I thought I would reply to this thread before I forget how to find it again:P

 

My release papers are similar to others above.  I had a ; Acute spontaneous intraventricular intracranial hemorrhage with hydrocephalus.

and my most recent cat scan said this: Previous right intraparenchymal and intraventricular hemorrhage no longer seen.  So I'm not sure if I had an SAH either??  I just know I had a bad headache, I'm tired and I'm having trouble typing with my left hand!! 

 

Nice to meet you, thanks for the great reading so far and I will introduce myself soon! 

 

Suzy

 

 

 

 

 

 

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Hi Suzy and welcome to BTG.

 

Yes, since they changed their opinion on my SAH and decided it was an intra-ventricular haemorrhage I have seen a couple of other doctors who have all been of a similar opinion - that it is mainly semantics and all of these types of brain haemorrhages are often connected anyway!

 

From what I understand (although I could be wrong) as all the parts of the brain are inter-connected these names for haemorrhages are mainly to do with where the bleed originated. The intra-ventricular ones are ones which start in the ventricles and that is why they often lead to hydrocephalus. Obviously I now know my bleeding started there (they think from an artery or vein but they are also looking to see if I have an AVM currently as well) and then spread into the sub-arachnoid space as well, similar to a SAH, which is why they thought it was an SAH at first.

 

As I have posted above though I have had a lot of appointments etc. since my haemorrhage to try and figure out the cause of my haemorrhage, mainly (I think) as I had it during surgery and due to my heart condition I am likely to require more surgery in the future (my medical records definitely have me down as an extremely risky patient!).

 

I would guess that the 'Previous right intraparenchymal and intraventricular hemorrhage no longer seen' could be that the evidence for the bleed has cleared up - i.e. the blood has dissipated. This does occur over time, which is why they often do scans etc. a few months after the bleed. I am having an angiogram in October almost two years post-bleed and this is because they are hoping to be able to see more now the blood has gone and the swelling gone down. I would suggest speaking to your doctor about it to clear things up as it could be to do with something else.

 

Based upon what you have said thus far am I right in assuming that they have not found a cause for your bleed? You also mention hydrocephalus - did you have to have an EVD or a shunt fitted (I ended up with an EVD and then a shunt in the end).

 

Anyway - I will stop bombarding you with questions! Look forward to hearing more from you when you feel up to it.

 

Gemma

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Hi Gemma!  Thanks for the quick reply:) It let's me know that I am posting correctly!!

 

I do know the cause of my bleed, I'm just not sure of the particulars as the doctors haven't told me much and I was passed out through most of my early days in the hospital.  I've had hypertension and stress in my life for years, but I didn't always take my BP medication.  The side effects bothered me and I often put off finding other options.  Sadly, my bleed happened on July 9th and I had actually made an appointment with a specialist ( I also have hypothyroidism) on July 11th)

 

As for the ct scan, I had my most recent one on August 4th, so that was less than a month after the bleed.  I am hoping that "hemorrhage no longer seen" is good news.  Once again, I didn't talk to the doctor much, I just heard him say that the scan looked "beautiful".  I'm glad that he is so efficient, but details would be nice since this is all totally new to me!

 

 

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Hello again:)  my computer froze and I had to switch to my phone.  it's actually easier to type this way!  crazy because this won't help me when I go back go work! I'm a special education teacher and I have a ton of computer work to do. 

 

Back to my bleed;  i did have some type of drain that stayed in for a couple days, but I remember them saying that I didn't need a shunt?  I have no future neurology appointments scheduled.  I'm only seeing a home health nurse once a week and occasional visits with my GP.  I was on 4 BP meds!  But the nurse was able to get that changed to 2 since I was very dizzy and lethargic.  What a change this is from my previous "can't sit still" self!

 

They also have me on Lexapro which is totally against my mental health beliefs, but I'm going with it for now since I've been kind of weepy and isolated.  Thanks for listening and I will "talk" with you soon!

 

Suzy

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Hi Suzy,

 

It is ok. When I first came on here it took me a while to get to grips with it all and post. I was useless on a computer at first (didn't help that I had forgotten all my passwords as well).

 

The first few months after the bleed are always quite tough. I also do not really remember any of my stay in the hospital and when I started going to follow up appointments I still felt rather dazed. I started writing down the questions I wanted to ask them so that once I got there I could make sure I had asked everything I wanted to.

 

I also took along my husband so that he could write down the responses for me to look over later (also meant I did not have to remember everything, which is useful as now I never remember everything!) If you have questions about your bleed in the coming months then I guess your GP would be the first port of call? They could then always get in touch with further specialists if needed.

 

I would imagine the drain you had in was an EVD or something similar - this is where they make an incision in your skull and then drain off the excess fluid. I still have an indentation where mine was at the front of my skull.

 

If you are able to come off that then you usually do not need a shunt. I had an EVD for about two weeks and could not come off it at all, hence the shunt. I don't remember any of this though so it was actually my husband and family who made that decision along with the specialists. There are others on here who had an EVD and never needed a shunt and also ones like me who then did have a shunt fitted. I guess it just depends on if the hydrocephalus rights itself or not.

 

I am pretty sure I still have the hydrocephalus as I think I can hear the valve on my shunt when I sit up or lie down. I mentioned this to my neuro-surgeon and rather than laugh at me (which is what I thought would happen) he agreed and thought it was likely I was still shunt dependant based upon that and my scans.

 

Coincidently, I am also a teacher. I teach secondary geography in a state school and also have a managerial role. I have spent the last year returning to work and have now settled on working 4 days a week for the next academic year with Wednesdays off (need the mid-week break). There is lots of good advice and things on here about returning to work when you are ready to do so. I guess the only thing I would say is that I found returning to work took a lot longer than I initially thought it would.  

 

Finally - the weepy and isolated feelings also sound familiar. Post-haemorrhage I would get upset at the slightest thing and wonder why. Adjusting to everything takes a lot of time and can be a tough journey. Whilst my friends and family have been excellent I think sometimes it is difficult for people to truly comprehend what it is like to have an event like this. That is one of the reasons I found coming on here useful - it is nice to 'chat' to others who have been through a similar experience.

 

Take care,

Gemma

 

 

 

 

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Hi Suzy

 

Ditto all Gemma says. I too had an evd but was lucky not to need a shunt. Do you have the tell tale evd dent in your right temple?

 

I'm 18 months post bleed now and back working albeit in a new place of work - the hospital I was taken to when I had my nasah.

 

Like Gemma I work 4 days with Wednesdays off, it works well for me having a break mid-week. I was not given a cause for my bleed, just an unfortunate event. Sometimes I wish I could be told why it happened then I would not worry about it happening again.

 

I am lucky that my after effects are minimal, in fact if I didn't say, people would not know I had had a haemorrhage. But I KNOW. My memory is not as it was and I still get easily tired, but I am coping and enjoying life. I have days when I wish it had not happened to me but they are few and far between now.

 

You are early days, things will get better. Just don't rush back to work, I wish I had taken longer but I was only paid for 3 months. And when you do go back make sure everyone knows you will get tired and will need breaks, teaching is a hard job so be kind to yourself.

 

I agree with Gemma that although friends and family are great, it takes another survivor to truly understand how you feel. Keep coming back to BTG there is always someone here who will listen. Take care

 

Clare xx

 

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