Jump to content

2nd opinions or further testing?


Recommended Posts

You are welcome. I think worries and stress are what you make of it. I have patients who get upset by a wrinkle in the bed sheet after they retire? I don’t know why they react to such thing and get upset. Sometimes I think people forget the present and the big picture.

 

Music can be soothing for stress so can pets. Helping others such as volunteering can be helpful too.

 

I don’t know the why . some say smoking, drinking , aggression such as working on the stock market or the ER? might be the cause but who knows. I definitely believe in past actions and we don’t know what we did before but we are here and our job is to do good things in the present so good things follow us in the future.

I also try to sit and meditate 20 minutes three days per week at home when I can, so far it kept me healthy except for aches and pain due to being 47 years old.

 

Goodluck.

 

Link to comment
Share on other sites

It took me a while to get over the "why" question too.  Something as scary as a brain bleed and you leave the hospital with a "don't know why" is hard.  But I finally put my faith in the statistics.  They know my medical history and with that, determined it was just something that happened, but is unlikely to happen again.  Based on statistics of thousands of people before me who have suffered NASAH with no know reason.  So I finally accepted it.  I hope you can get there too.

 

Chris

Link to comment
Share on other sites

Thanks, me too!  I think it's harder to get over when there's already an underlying condition.  It makes me feel like someone must have missed something because if I have this then I possibly can have something else as a result of it that may have aided in the bleed.  That's how my mind works anyways.  Also, I get reminded frequently of what happened by headaches so it's hard to let go.

 

This week actually has been a pretty good week for me so I'm keeping my fingers crossed that my head is starting to settle. Either which way I am so gretaful and thankful to be here with my kids and family.  I count my blessings everyday.  Thanks for your support!

Link to comment
Share on other sites

Yes I had been doing it off and on since I was in my twenties. Now I try to do it more. I don’t know if you can fly or drive but it s better to do it a proper way with a teacher. I m doing a ten day course in oct at IMC USA. You can go any  time when they have classes. They charge you 35$ per day but I m sure they ll waive that fee if you want to try it first. I believe some special forces are there. I feel like I can let go of many things after each sitting.

I sent you email but again  these are the books you can try.

 

loving kindness

i give you my life

be an island

being nobody, going nowhere

the best of inquiring mind.

ttyl. Have to work

Link to comment
Share on other sites

Hi Krislwal. I am by no means an expert on this but my understanding was that a non-aneurysmal SAH (nasah) could be divided into two categories based on the location of the bleed - an aneurysmal hemorrhage pattern and a perimesencephalic hemorrhage pattern. I wonder if someone who knows more about this than me could clarify? it's been quite confusing. 

 

The neurosurgeon who cared for me in the hospital told me my bleed (the perimesencephalic pattern) could not possibly be an aneurysm based on the location. I thought this was the reason they didn't do any follow up scans on me. I only had one CT scan the day of my bleed, an angiogram the following day, then an MRI/MRA a few days later.

 

Do you know which pattern you had? I often worry about the same things - especially since 7 months later I still feel dizzy and confused at times - and headaches almost every day - and I am told I have no follow ups. I keep wondering then why am I still feeling bad....

Link to comment
Share on other sites

Dbc- I had the perimesencephalic type as well.  They did 3 angiograms on me to be certain there were no aneurysms or malformations.

 

 The third one being a month and a half after the fact when I was already home.  They said I would have a scan in a year but I ended up having 2 CT scans about 5 months after my bleed for a constant pain that would not go away in the back of my head.  

 

Both scans then 1 week apart, 1 with contrast and 1 without, were clear.  I had a follow up with my neurologist about a month after that and now I literally don't think I go see him again for another scan until the end of this year.  

 

I am 9 months out and have an array of things going on at any given time.  Headaches, dizziness, confusion, etc.   Basically what everyone else complains about on here.

 

 You're still feeling bad because the brain and scar tissue from your bleed take time to heal as everyone here can attest to.  It's a very slow process for sure.  

 

I am definitely not who I was before my bleed but everyday in every way I'm getting better and better.  At least that's what I keep telling myself.  Slow and steady wins the race and take one day at a time.  

 

I do so much to try and make my mind right and deal with the anxiety of it all, mindfulness, meditation, acupuncture, montras, you tube videos......  lol... I'll try anything!  I wish you well.

 

We are all in this boat together and people have great advise on here so keep posting when you have questions or concerns.  Everyone on here will put your mind at ease.  

 

I will say this, for me personally, I would need a follow up if I wasn't given one.  So if you are unhappy with answers you are getting then find someone else that will give you answers that you are more comfortable with.  Good luck to you!

Link to comment
Share on other sites

Hi dbc

 

Non-aneurysmal perimesencephalic haemorrhages (PMSAH)  are generally regarded as having a benign clinical course - it is very rare that there will be any complications leading to death or severe disability for this type of haemorrhage. Rebleeds are also extremely rare - we have a member Jimble on this site who has had 2 perimesencephalic bleeds, but apart from him I have only read about one other case of a perimesencephalic rebleed and that was cited in the medical journal as a unique case.

 

I am not sure what your neurosurgeon said is strictly true ( I think some doctors sometimes try to simplify information in order not to complicate understanding) - a very small percentage of haemorrhages with a perimesencephalic pattern will be caused by an aneurysm in the posterior circulation. The perimesencephalic pattern gives doctors a good indication that the bleed is most likely to be non-aneurysmal, but they do have to do further investigations to confirm this. Your angiogram would have confirmed this.

 

I am guessing that the neurosurgeon was pretty happy with the outcome of your first angiogram to feel that another was not warranted. You have to remember that an angiogram is an invasive procedure carrying a risk (albeit very small) of stroke - a neurosurgeon would not want to carry out another unless absolutely necessary and might consider follow up with an MRA sufficient. I have even read of cases of PMSAH  not getting even one angiogram, just a CTA.

 

I had a PMSAH and had 2 angiograms - this was only because of a vasospasm of my basilar trunk artery on the first one - they needed to do another 3 weeks later when the vasospasm had resolved to ensure no aneurysms were hidden by the spasm. I would have been completely discharged after that with no follow up had it not been for a small unruptured aneurysm I have monitored.

 

If you are still worried I would get back in touch with your treating hospital to talk through any concerns.

 

Unfortunately because of its benign clinical course, and the fact that PMSAHers are often not followed up, I think that this has led to some medics underestimating the possible long term impact of a PMSAH. Whilst it is true that some do make a remarkable recovery there are plenty of posts on BTG to show that this is often not the case.

 

I had a PMSAH just over 2 years ago and my most frequent and enduring symptom is the fuzzy head. I also sometimes still suffer fatigue, headaches, insomnia, mild tinnitus and am also quite sensitive to light and noise. For me, working only 18 hours a week (I'm a data analyst) makes life just manageable. It is hard - I know if I did not work I would feel much better physically. If I was younger I think I would have had to quit my job and try to find something easier on the brain - as I am only a few years from early retirement I decided to stick with it but every now and again I question that. Roll on retirement!

 

Take care everyone.

X

 

Link to comment
Share on other sites

A quick explanation from my knowledge (I'm ER not neurology)

First, something burst. That is a fact. Because blood was seen. My father calls it "blown flat tire syndrome"- a good name. Because something definately burst.

What burst was either an 1)ARTERY or 2) a VEIN.  The angiograms only can see arteries. So if you had a negative angiogram, then a vein burst.

 

That is, in a nutshell what a perimesencephalic bleed is. A vein burst. 

 

The long P word just means the location blood was seen. But the blood settled to gravity so it may not have burst in the mesencephalon, it just floated down there.

My personal, not provable, opinion is I likely had an aneurism of a vein. It may have been there since birth. I suspect this because before the "burst flat tire", when my blood pressure was high, I would feel terrible. That was the veinous aneurism growing under high blood pressure. I now dont get those symptoms under high blood pressure. Why? Because it already burst. Imagine a water balloon that gets larger and larger, then bursts.

 

So its complicated, but my understanding is: i had an aneurism of a vein, my whole life. It blew. It bled. It stopped. The angiogram was negative because angiograms only see arteries. Your risk of bleeding again is 1% nonsmokers. 3% if yousmoke. 

Link to comment
Share on other sites

FM that’s interesting to know the difference between SAH types is the type of blood vessel that bleeds.  

 

I attended a session at my treating Hospital  with a mixed group of people (some of us had SAH, some NaSAH ) and a Neurologist explained briefly to us that when the bleed occurs and enters the arachnoid space the mass of blood mixing in the CSF can often slow or block the filtration in the ventricles thus creating an amount of pressure build up but when that happens it  also effectively cauterises the bleed. If it’s a vein then this can help stop bleeding but its not the case with arterial aneurism.

 

This slowing of the ventricle CSF draining process is what leads to having an EVD placed so it relieves the pressure build up. But even if you didnt have a EVD your ventricles are still acutely irritated and that is going to take a good while of healing. 

 

 My ventricle system never recovered fully and I subsequently had a shunt placed and I speculate that the brain system post bleed , which was a perfect closed operating environment until that point, is corrupted and has to adapt to new imperfect conditions and do wonder whether the all too common dizziness is a ‘speck’ or trace of residual blood tracking through, months, even years after. it’s a filter system after all , that might be possible. Just me speculating though. 

 

Anyone ever drop a phone down the toilet and put it in a bag of rice to dry out. If you are lucky you acted fast enough but that phone never works quite the same , it’s slower, some programmes won’t switch on, it turns off randomly, all because things got wet that werent  designed to. Sound familiar? Thing is we all had blood leak in the one place it wasn’t designed to be loose in. We survived it, our brains weathered the assault but I Now am never surprised by the strange effects it can throw at us. Unsettled, scared, dismayed at some ,  yes all those things but no longer surprised. 

Link to comment
Share on other sites

There are lots of theories but the exact source of a non-aneurysmal PMSAH is still not known for certain.

 

When I asked my neurosurgeon in hospital why it happened he shrugged and said ' we don't know' - because he told me it was very unlikely to happen again I accepted this. But I do like to know the why and what about everything so did a bit of research when I left hospital - I soon realized I was never going to find a definitive answer on this one and so let it go - did not even bother re-asking the question at my follow up.

 

From what I've read I'm happiest believing my PMSAH most likely had a venous or capillary source, and I don't worry about it happening again.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...