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Surfer34

Risk of Rebleed in Perimesencephalic Subarachnoid Hemorrhage - Repost

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So I am guessing all of us who have experienced a subarachnoid hemorrhage and survived are natually concered about the chances and risk of a bleed re-occuring.

 

My doctor said the chance was "very low" and and it sounds like many people on this board have been told similiar things from their doctors. However, I wanted to research the issue myself and find out the true statistics and evidence.

 

Here is what I came up with.

4 studies with approximately 250 study patients and a average follow up time of 3-5 years have found NO cases of a rebleed. The largest study is by Rinkel et al and their study had 160 patients.

 

Cincinnati Study

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1388255/

http://stroke.ahajournals.org/cgi/content/full/38/4/1222

 

Austria Study

http://www.uptodate.com/patients/content/abstract.do?topicKey=%7EkbxUbGmB8WXqiwH&refNum=12

 

Japan Study

http://www.uptodate.com/patients/content/abstract.do?topicKey=%7EkbxUbGmB8WXqiwH&refNum=30

 

Mayo Clinic Study

short version

http://www.mayoclinicproceedings.com/content/73/8/745.short

long version

http://www.mayoclinicproceedings.com/content/73/8/745.full.pdf+html

 

I was very very encouraged that 4 studies found no cases of rebleeds and were confident enough to conclude that there is NO risk of rebleeding. Then I came across a small study of 21 patients that reported a male subject experienced a rebleed 31 months after his first bleed. This was surprising to me but still put the risk/chance of a rebleed at under 1%.

 

http://jnnp.bmj.com/content/69/1/127.abstract?cited-by=yes&legid=jnnp;69/1/127

Upon further research though I found that the authors of previous studies had reviewed the smaller study and found some issues with it, namely the reported cases of the rebleed. They challenged whether it really happended or could be proved.

 

For those who are interested here is a good back and forth between the two study authors.

 

Short version

http://jnnp.bmj.com/content/70/3/419.2?cited-by=yes&legid=jnnp;70/3/419a

Long version

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1737243/pdf/v070p00419a.pdf

 

In my opinion, after reading these exchanges I believe one can conclude that the authors who claimed to have a patient rebleed certainly did not prove such and it can be concluded that no study has ever found and confirmed a patient with a perimesencephalic bleed and rebleed or even an anuerysmal combination with perimesencepahlic.

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Hi there. 

 

I know this post was 2010 but how do know why the risk of bleeding is nil or low.  Why is it a one time occurence.  I can understand chicken pox occurring once but not sure re this. Any clues . 

 

Shazzy

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Hi Shazzy

 

From what I understand a non-aneurysmal bleed is probably cased by a vein bursting and bleeding into the subarachnoid space. I had a NASAH but with an aneurysmal pattern rather than perimesencepahlic. I think the patterns relate to where abouts they were in the brain and the severity.

 

An anuerysmal pattern  NASAH usually mimics a bleed caused by an aneurysm and is usually followed up with further angiograms to rule out the possibility of that being the initial cause. From what I have read the recovery from a perimesencepahlic bleed is sometimes quicker and less problematic. I stand corrected if others see it differently.

 

The risk of re-bleed in any type of SAH is very rare. Presumably if it was caused by an aneurysm and that aneurysm was coiled or clipped then the chance of that re-bleeding should be nil. Nasah bleeds are usually one off events and providing a detailed MRI has been done after the event then the chance of it happening to you again is probably nil. That being said there are people who have had re-bleeds so there is almost always that slim chance.

 

Try not to stress too much about a rebleed, it is extremely unlikely and you are more likely to hamper your recovery by the stress of worrying. Relax, rest and plenty of water. 

 

Good luck and keep well

 

Clare xx

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Hi Clare,

 

Thank you for your post.  I like Shazzy was very taken back when I was told a re-bleed was highly unlikely.."Go live your life" my doctor told me and I am doing my best to do just that .....but....did have, to a lesser degree as time has gone on, some worry about it happening again. 

 

I had my SAH, was hospitalized for 3 days came home and on day 4 had a severe vasospasm...It was a while before I understood what had gone on and it left me feeling for sometime it may happen again...It is good to see this topic here...AND that is why I come..  :)

 

Thank you,

Jean

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Thank you Clare and Jean. It's good to talk. Not knowing why there was a bleed is difficult to swallow. There is always that question lingering.

 

I am only 5 weeks in so I am trying not to stress. I was told by the neurologist that there is a risk in seizure 4 to 6 weeks post bleed if you exert yourself or lift heavy objects.

 

 

Thanks for the chat

 

Shazzy

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Shazzy it was a while before I started feeling, safe.  I am 1 year out.  I admit I still worry when I go out of the USA and buy travel insurance that covers pre-existing conditions.  I am much better as time goes on.   Do indeed do what your Dr. says and rest assured he or she is your best advice.  We here are great supporters and listeners.   Best wishes for a great recovery and welcome to the site.

Jean

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Hi Jean/ Swishy

 

Thank you. I will definately listen and the site is really good support.

 

Blessings to you

 

Shazzy

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Hi,

 

I just hit five years and it took five years to feel safe again.  I still have "my days" but the constant fear is now gone.  It's a bitty fear.  ?  You learn to manage it and go on.  My first two years were the worst as people that know me on here can attest.  

 

You will come to know your body again and not feel that sense of doom when you get a dizzy spell or instant headache.  Ah, yes, I know it well.

 

Keep focused on the th future, it's there for you.

 

 

iola

 

 

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Thanks Iola,

I am so hopeful when I read posts such as yours.  I want to leave this fear behind...all of it...I have been able to chip away at it but some of it still stays with me.  My doctor this week again reminded me that it is not likely to happen again.   I am getting there day by day...

Jean

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Hi, I read posts like this and it makes me feel better as its what I want to hear but then as I am new to the sight and having an SAH I have been reading through older posts and there are a number of people mentioning they have had second bleeds. I have to wonder how the numbers on here who have experienced re bleeds stacks up to the studies that have been done?

 

I obviously want someone to tell me something that will make the studies right and make me feel better!

 

Thanks

Charlotte

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By the way. I can actually spell and make sense normally but my posts are terrible for mistakes at the moment. I am gonna blame the brain! 

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CharlieD,

I have not seen any patients having a second bleed and according to my neuro friend, its rare.  Im primary care here in the US.

I think it depends on each and individual case and some have less deficits than others. Some get much better after three months. Some need extensive procedures while others don’t. So I don’t think you can compare too much. Of course other med conditions such as blood pressure, heart disease, age, smoking etc can all play a role. 

 

Please write down all the question so you can ask. Ask the doctor if they have an email address so you can send questions later and most docs will be ok with it. I have people who are hearing impaired, some can’t talk because they had esophageal cancer etc etc and we email each other all the time. 

 

Many doctors don’t see SAH on a daily basis since its rare or some don’t make it. So please be thankful and always keep hope. 

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Hi Catwoman23,  yes that is true maybe there were other risk factors. I am seeing my neurosurgeon on 11th July, so I will start a list of all the things I want to ask to take with me including this.  It seems like I have thought of 1000 questions since I last spoke to him. 

 

I know I am a nightmare for knowing every detail which is not always a good thing. I would imagine it must be similar for a doctor or maybe not with all you see.

 

Charlotte

 

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Thanks for all the study information it’s very reassuring  to read this and hear fellow sufferers give their thoughts. I am 7 months  post NASAH and now  feeling better and have just started 2 full days back at work. However strangely  now I’m getting some normality back in my life I have started to dwell a little on “ what if this happens again ? “

 

So this discussion has certainly helped a little to put my mind at ease. 

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Wow, what great evidence. 5 yrs followup, 250 patients, found no rebleed. I do wish it were 20 yrs or more, but otherwise good.

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I, like you are very scared.  I suffered dehydration on a recent holiday to turkey.  My immediate reaction was a re-bleed. Sadly this thought would not have entered my mind before SAH.  We all need to move forward and enjoy our lives as we have all had wake up calls.  Take care

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I am glad this website is here because I just spent an hour on google looking at the same papers over and over before I stumbled here.  It’s been 17 days since my SAH without aneurysm and while I’m quickly rebounding I still can feel the same twinge of pain through my forehead and my mind instantly considers rebleed.  Glad to see it’s unlikely with numbers behind it.

 

tim

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Hey Budd

 

Warm welcome to the site glad that you found us.

 

As time passes you'll find it gets easier...

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Hi Budd,

 

So glad you found this site...it is so helpful to actually communicate with people who know what we are talking about... I also get twinges of pain in my head (not terrible) pains I did not have before my SAH...I like you had no aneurysm, no cause found...also had a vasospasm which I thought was another SAH until I had a clearer head and could understand what had happened....

 

I am 2 years 8 months out.... I think I have less random head pains but I still have them...I am of course aware of them but they really have stopped causing me worry...Time is a huge factor here...

 

My best wishes for your continued recovery..

Jean

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Hi Tim

 

Post your story in the "Introduce yourself" forum and you'll find you get a lot more responses.  If you give us your story, details, circumstances etc, we can reply to your situation directly and it helps you to find help and support directed at you.

 

Welcome to the family and feel free to ask anything you need - although we cannot give you medical advice as none of us are medically trained.

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Hi Tim. 

 

I believe the fear of rebleed is universal among SAH survivors. 

I am nearly 9 months post bleed and feeling more like my old self. 

 

I asked my Neurosurgeon at my final check up back in September, about likely hood of rebleed. She said that in her 16 years as a practicing Neurosurgeon she had seen one patient with a rebleed. 

Good odds that I am happy to take. 

 

All the best for your recovery. Rest, exercise  and plenty of fluids were the  best advice given to me. 

Regards 

Bri. 

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