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Non Annie SAH questions


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I had a non Annie and would like to hear from others in that same category so I can straighten this out in my mind. My neurosurgeon says my SAH in my brain stem with blood in spinal fluid was unrelated to my occipital lobe hematoma. And my case is strange to him so NOW I am wonderign if it is really that strange or do I need a new surgeon I also have a small brain tumor in my tentorial tumor (probably memingoma in my Posterior Fossa). THE BT should not be causing me any problems. I certainly had 6 months of major fatigue and confusion prior to that day when I had my big episode.

So my question is to those of you without Annies what all happened to you and what is your final diagnoises? Because I think I hear all the time that everyone had more than one hemorrhages so I am now more confused.

I am looking forward to hearing replies.

Thanks, Mary

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Hi Mary! I will pm my medical info to you but it doesn't include the before stuff.

About 6 years before my bleed something happened. I felt dizzy all the time, my arms were numb, I just didn't feel well and had heart palpitations. I had an ultrasound on my heart and it was ok and a CT scan on my head. They were looking for MS. They found 'damage' at the back of my head but it was never explained to me. It was all rather weird. The GP (not the same as now) asked if I was using cocaine- which I was NOT!! In the end my symptoms eased off and my regular GP (retired now) said the brain was fine and I probably had a virus. ??????? I still have questions about this but my GP today thinks I had a bad neurologist and refuses to send me back to him. Maybe he's doing cocaine.... Hahaha!

Leading up to my bleed I had fatigue, was dizzy, and heart palpitations again for months. I was seeing my GP and getting tests to try and figure out why I felt yucky. Then bam, I had the bleed. The heart palpitations have stopped.

My GP, the neurosurgeon, and the chief of neurology have all told me it won't happen again.

Sandi K.

Edited by Sandi K
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Hi Mary, try not to worry too much. It does seem to be extremely rare for anyone to have another bleed after the 1st SAH and from looking at links that have been posted on here before, I think a further bleed after a non annie bleed is even rarer.

I wonder if you are confusing people having more bleeds with people having more annies? I think a lot of us on BTG have more than one annie but, again, it seems to be very rare for people to have another bleed. The annies are usually treated or closely monitored when they are discovered as far as I know.

Do you or the doctors know what caused your heamatoma? Is that a word to describe a bruise on your brain (or am I muddling the word up with something else???) Is it a temporary thing after a bump/blow to the head or caused by something else?

There are so many different brain issues for you to make sense of and find out more about. It's such a lot for you to take in & deal with, i'm sure it can't be easy for you.

Michelle xx

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Michelle, I understand I will probably never get another - I am wondering if any of the non aneurysm SAH had more than one bleed at the same times as it is weird says my Dr. because more than one bleed is usually caused by anurysm but I had 2 different issues at one time which is very odd to him - I do however think the occipical lobe was ready to burst for at least 6 months as I was doing odd things with writing wrong and saying wrong words etc.. It is one of those things you will never know but I believe the one was there for awhile. I also wonder if the brain stem SAH just pushed the other one over the edge with the high blood presssure etc that happens when that headache hits.

So the question is "Is it odd to have more than one with a non aneurysm bleed or not?" If so I may or should I get a second opinion as much as I like my dr.

Thanks, m

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Michelle,

I was just taking a bath and I was thinking 2 things.

1. That my answer to you probably sounded short as I was thinking so hard to ask/ word the question correctly while having headache. In fact while I was getting my pj's on & I was also thinking you all think " That Mary is so rude and blunt!" and my answer in my head to myself was " You should of seen my parents if you want to see blunt, direct to the point, rude" never say thank you" SO sorry my parents were German! ONLY Kidding you germans out there.

2. I did I get someones cold from BTG?

So I apoligize for my short answer by the time I was done writing my responds I just did not even think to say thank you for your reply becasue I was so wrapped up trying to explain myself which I dont know if I even did. And of course I am ashamed for not even thinking of thanking you until I got upstairs in the bathtub where it is quite. Shame on me.

Maryb

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My SAH was non aneurysmal. I didn't know that till a few months ago. Here I was telling people I had a brain aneurysm when it was really a brain hemorrhage. I never did have an MRI, I only spoke to the neurolgist once, that was just before my discharge when he informed me chances of a rebleed were miniscule. I did not get the cerebral angiogram till 5 days after I was admitted. The real indicator in my case that I had a SAH was the lumbar punctures. They made 4 attempts the first night and failed to draw any CSF. The next morning they did a 5th puncture and there was blood in the fluid. They took 3 or 4 vials of fluid. I didnt know at the time why they did that but I have since read that they required this much fluid to elliminate any chances the first vial was just contaminated with blood from the previous lumbar punctures.

I don't think my SAH was Perimesencephalic since they did not notice any build up in that region.

I was very relieved to find out chances of a rebleed we minimal and that there were no aneurism present. I do wish I was more informed of the processes and what the findings meant while I was still in hospital. It wasnt till I found BTG that I started researching SAH.

In your case where the doctor believes your case is strange, his phrasing may be a little confusing. Sometimes a coincidence is just that a coincidence. Strange may just mean unusual.

The hematoma would be a clot where the blood in the CSF would be fresh, I think that is why they are not related. But I am not a doctor. Just a lucky friend :wink:

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Thanks Carl, I am such a dim wit tonight I should just go to bed but Monday I have appt with neurologist and I will ask for hopsital reports and maybe it will make better sense to me. I thought it did yesterday but by evening I had a bunch of new questions.

The hematoma would be a clot where the blood in the CSF would be fresh, I think that is why they are not related. _ what is a CSF?

Man, I am sneezing my head off, I can't believe I have a cold she says in a whining voice.

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Aw Mary, I think I gave you that cold! Sorry! I caught it from DonnaMarie in Ireland. ; )

I asked my GP for all my reports. Everything was eventually sent to her from the specialists so she was my one point of contact. I needed to gather it all up for insurance so I got copies for me too.

When I had my appt with the head of neurosciences I had a long list of questions. He is a busy man and his pager was going off. I knew this was my one opportunity to have his time. I explained to him that I knew he was busy but it was important to my recovery that I understand what happened to me. He answered his page and then returned and gave me his full attention. I was still left with questions because it's all so confusing! But it was an Occupational Health advisor who suggested to me that I explain to him how important it was to me that we go over my questions. I was so grateful she offered the advice because once I did that he gave me his undivided attention.

I hope your appt on Monday goes well and you have a better understanding of what happened and what to expect in the next little while.

Xoxox

Sandi K.

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Hi all, i had pretty much the same conversations and treatment from my neuro. At first, he was very dismisive, i felt like almost he didn't wanted me to be there and to not bother him with my questions. Then i thought, maybe because of my age/look, because i look young for my age and he can just treat me like a kid. I told him doc i'm not a kid...i'm already pushing 40! (profile pic was taken about a year ago he!he!) I even remember he was in my room at the hospital and asking me all kinds of questions. He even asked me if i was doing cocaine! what the hell? not all young lads do drugs doc i said. never and never will. And finally my next visit, he was going to do the same thing again (dismiss me early)..."Ryan, you're doing great. just keep monitoring your blood pressure and your diet and you'll be fine." then i said...(finally had the courage)...i said listen doc, with all due respect...i'm here to find out what exactly happened to me and i have this list of questions i would love for you to answer...please sit down. And he did...he apologized for being dismissive in the beginning and explained that because i'm doing so well and assumed that i had no questions. yeah right.

Anyhoot, Hi Sandi...hope all is well my friend.

To everyone looking in....Hello!

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Mary, please don't worry, I didn't think your reply was rude - I had misunderstood what you were asking & had another blonde moment!

It can be hard to explain what you are trying to get across, I have the same problem too and totally understand that just getting your point across takes up enough brain power that everything else is pushed out of your mind. I hope you are able to get the answers you are looking for.

Michelle xx

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Ryan Phillip,

I am impressed that in the hospital you were able to ask such questions! I am 5 months out & just NOW thinking of questions. Cocaine, diet drinks& drugs are one of the leading causes of NASAH- I do not recall them asking me that but by my list of medications & beign 20 #'s overweight I guess they assumed I wasnt doing drugs! Anyway I had asked my husband months ago if they asked those questions when I was reading and he said no.

Do you think you had any symptoms prior? I have always had low BP until abotu 4-5 months prior it was higher everytime it was taken. I was also under a great deal of stress and grief stricken prior but i was writing the wrong words in charts and having memory issues as well up to 6 months piror along with extreme fatigue. I did not have the headaches I have now but the fatigue was worse prior. Now i have to sleep because my headaches, b4 i had to sleep because I could not sit up any longer!

Thanks for your reply, mary

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Hi MaryB,

Yes, i thought it was weird that they were asking me those questions. I stayed in the hospital for 7 days, then a few days at home to rest and came back full time at work the week after. Many thought i came back to work too soon. Everyone at work 're very supportive even to this day.

To answer your questions, yes i knew that my bp were 'n the high end but never to a point that it was over 200's. I always had it around 130's over 80's but the day that it happened i was told that it was 200 over 140, yikes! I was under a lot of stress from work(boss) and dealing with a recent break up. The symptoms were there, i noticed that when i get up in the morning the back of my head (neck)always hurting. I thought it was just my pillows! ha ha plus i was always hot...but i'm taking meds now for my bp and excercise daily plus a very strick diet. I'm 5'11 and 180 lbs fit and always been...just bad genes i guess. Dad already had 2 major strokes.

Well Mary, hope all is well with you. It's so nice to meet you here 'n BTG...

To everyone lookin' in HELLO!

Ryan

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Hi there. Thought I'd add my 2 cents worth....

As to my NA-SAH, I was not in any risk groups, ie diabetes, high BP, was a non smoker and fit, healthy diet, but was under a lot of stress for the past six months prior to the event. I had undergone two cancer surgeries and multiple diagnostic procedures for the breast cancer. Although I thought I was handling it well, I likely wasn't. The stress of it caused huge stomach and gastric problems. However, I want to believe that a fall I took skiing three weeks prior likely triggered the bleed. My PT says these types of bleeds usually follow an event such as a head injury or motor vehicle accident. Not sure why the doctors dispute this.

The bleed occurred in my right parietal lobe and has left me recovering from some sensory issues. My BP was I initially higher for the first days into recovery, but has resumed its usual normal readings since. Sensory issues are resolving nicely, but fatigue still attacks me on occasion.

I consider this stroke to be the "stroke of good luck". I know that technically it is not a stroke, but in Canada they do lump these sah's in the stroke category, even on the poster boards in the hospital. I have been handed back my life on a silver platter and for that I am grateful. Stress and stomach issues non existent at the moment - both resolved since the SAH. Cancer is in its place and will be easily treatable. Life is good. I see things from a different perspective now and have a chance to address things in all areas of my life that werent working so well pre-SAH and make those changes for the better.

Sue

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The hematoma would be a clot where the blood in the CSF would be fresh, I think that is why they are not related. _ what is a CSF?

Man, I am sneezing my head off, I can't believe I have a cold she says in a whining voice.

CSF is Cerebrospinal fluid the fluid contained in the subarachnoid layer and the spinal column.... good old lumbar puncture fuel :)

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My SAH occurred without aneurysm too. I read in my medical records (afterward) that they were calling it 'perimesencephalic' even though they did note that it was somewhat more diffuse. That word diffuse made me cry when I read it because I always suspected it was more than just perimesencephalic because I had to be in the hospital for 3 weeks while others would be out in just one. Living with "How did that blood get there?" sucks. I was also told that the likelihood of it happening again was very low...almost zero because there was no aneurysm and I have and always had low blood pressure, no risk factors and such. Still...the worry (feeling) is always there.

I did have neck pain for a couple of weeks prior to the massive headache event that brought me to the hospital. I know this sounds weird, but I wish I had an aneurysm...then there might at least be some answers or some life style things to change to work on prevention. Why am I still having issues when there was no brain damage...it's been 6months! Will it ever end? How do I accept something when no one can give me any answers to what it was let alone why?

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K

I had my follow up Neuro appt. yesterday. I am cleared for 4 months unless something comes up. I am doing well and better than expected. I declined migraine medications becuz of side effects are worse than contast headaches. I do not have to see my neurosurgeon for a year after my mri on 2/21/12.

I did get my MRI w& W/O contrast reports and some CT scans from admitting day. Interesting reads. I do not understand when I tell these dr.s that my reading, writing and verbal skills are worse as I always was dyslexic but now it is just awful at times. I also cannot even look at the washing machine when it is agitating. They just took notes but after reading about where my white matter, softnes or degeneration of brain tissue is it explains it all to me. I just do not understand why they cannot just say well your scan says that as well!

I however feel better about reading about it because it helps me understand but I am just speechless when it comes to them sharing or maybe they think it wil improve later so they do not want to hold us back. I dont know.

m

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Hi Mary

Glad you feel you're one step closer - but I agree with you that the doctors don't tend to tell you anything much. I wish they gave you a bit of paper when they release you from hospital which, in simple language, shows their findings - with an x on the spot for those with an aneurysm and a copy of the scan showing general bleeds.

I had NASAH on 29th January and it was probably the most minor skirmish compared to most others here. Today I haven't taken any painkillers - and although I feel very tired and some pain, it's the first day I can cope without anything :-D They found a bleed from a CT scan but never found anything on the angiogram - the doctors told me they couldn't find the source of the bleed and that perhaps it had 'self healed'. They did a spinal tap as I was having severe headaches c3-4 days after the initial bleed and that had blood in it - then last week I had hydrocephalus again, so they had to drain off more fluid. I haven't had another bleed so far but again I've been told like others it is unlikely to happen again.

Prior to my bleed I had a lot of stress. I really thought this bleed was stress related, but the doctors said no. I was recovering from having my brother die in front of me from stomach cancer - we were very close and we worked together at his business. I then took over the business and was acting as his executor with my dad. I had been tired for many months beforehand but then again I had been working long hours covering both of our jobs. We'd also bought a new bed many months beforehand and I was having neck pain, which I assumed was the new pillow. + Last year I had pain in my face/jaw and thought it was heart related but had a stress test on the treadmill and all was normal. I was having a minor disagreement with someone when I had the SAH happen and I remember being particularly stressed at that point.

Unfortunately I don't think my experience will be helpful to you! :biggrin:

Nic

x

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I have to ask again, as I may be missing something? Why do non annie SAH sufferers think that their event is somehow less damaging than a bleed with an annie? I was led to believe that it is the bleed and the irritation blood causes to the brain cells along with the damage the pressure of the blood on the brain causes that leads to all the problems afterwards?

Does anyone have more specific information regarding this? I don't think the annie itself is the cause of any damage but the bleed that occured causes damage (the same as with a traumatic injury bleed like a car accident or a blow to the head). I find it a bit upsetting that non annie survivors seem to feel that they are somehow less entitled to have any problems afterwards. Maybe I have misunderstood something, if so, I would be very grateful to anyone who can update my understanding?

I do understand that as I have some annies it is reassuring to know that they have been operated on rather than to have no solid diagnosis for the bleed that can be similarly treated. I also understand that the surgery (surgeries) insert foreign objects into the brain area & that may explain why annie patients experience more intense pain for longer periods of time and that occasionally the operations may cause further damage but that is often not the case? But, again, that may not explain why any deficits with memory, understanding, fatigue etc occur.

Michelle x

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Michelle,

I do not think we think it is less damaging or i speak for myself I first inquired about non annies because I was still in the process of figuring out that any of it meant. I just know like the past 2 weeks finally have put it all together. I agree with Nic, I wanted a brain diagram with an X on it and simple words, to explain exactly what happened. I understand we do not know why and never will but for me I was always reading annies and non annies. I was just wondering what us non annies had in common if anything. Damage is damage. It is werid though I was as stressed as I could be when it happened and I had symptoms 6 months prior so I think and believe that while one may of been suddenly happens the ohter bleed of mine was a ticking time clock- more so after reading where it was and what parts it affects. I have a my own personal medical dictionary with words that I needed to know & understand about my scans. This is how I have always processed and studied. I could not prior like a month ago remember "occipital lobe" for the life of me. I just was like "the back of my head". One thing for me is I had 2 bleeds at the same time in different areas and not from aneurysms so I was confused as that I was lead to believe does not normally happen with non annies. My neurosurgeon told me at 3 months that he felt recovery would be similar/ same as surgery recovery. So although I havee been told time and time again I think I finally get it now!! yea!! for me!!! Now I have to lay down as my head is killing me~

Nic, Sorry to hear about your brother. That loss I am sure was very ard and still is. I find that stress is a common thread although my Dr.s say no.

m

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Hi Mary, thank you for the reply.

I totally agree that the recovery between surgery/non surgery is the same. Having read so many stories on BTG, there doesn't seem to be very much difference at all, it is as hard to recover from either way.

I understand that you wanted to compare what NASAH people have in common but there have been a few comments on several threads that seem (to me anyway) that NASAH people feel that they shouldn't feel as they do as it doesn't sound as bad as an annie and that somehow their recovery is expected to be quicker & better - I didn't get why it would be seen as any less serious and perhaps I should've started my question as a new thread to avoid any confusion.

I also think there is a link between a bleed & the stress people are under at the time & the months leading up to the bleed but it seems the medical profession have decided 'there is no link' and refuse to be swayed on this? Being lucky enough to (eventually) get help from Neuro psycology, it has helped me that they provided a brain diagram with X marking the spot - it gave me more knowledge and the ability to research how this area of my brain being damaged has affected me.

Michelle

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Hi Michelle

Thanks for your email hon :-)

In answer to your question I treat the seriousness of the bleed in direct correlation to "how long it takes to recover afterwards" and "how many problems you have post-bleed". If I'd had an aneurysm and coil operation, but still came out of this as well as I have, I would still say that mine was a more minor SAH compared to others, and that I'd been more fortunate than most.

The thing is, it happened just 1 month ago on 29/1/12. I have no paralysis, yes I've got eye pain but no visual impairment, I seem to forget odd words but it's not badly noticeable, I've had hydrocephalus twice but it seems to have resolved - but if not I'll just get a shunt, I'm tired but I can still go around shopping for a few hours and went to work yesterday for several hours too. I worked a few hours from home today and today was also the first time I've tried to go without pain killers and I'm OK. A bit headachy, a bit lacking in enthusiasm but wow... lucky? yes I do feel incredibly blessed and lucky. I have a beautiful 8 year old daughter and partner - and if it had gone badly we (or if I had been one of the unlucky 50%) they might have had a very different future.

I've read so many other posts from others - many still having lots of problems several years post-SAH and I can't help thinking that if you had a scale of severity for post-trauma I would score low. Maybe my brother was my guardian angel during this time. :biggrin:

Hugs Nic

xx

Edited by snootybutnice
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Michelle, I have jsut reread your comment again ( 4th time) and I do not know the answer why - I do not think it is anything more than more information on NASAH. I do not mean to be dense but I just am grasping at any straw that helps me "get it". I am making my own little pamplet! This way I can explain with colored photos & descriptions to my friends and family.

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Hi MaryB

One good thing about Southampton Hospital (where I was) is that they gave you a pamphlet to explain the condition (generic overview) and that was really helpful/insightful - I read through it a few times. It wasn't a personal overview though and you didn't get it until you were leaving. I'm guessing that your hospital didn't give you this? Lesley the specialist nurse at Southampton wrote it and she also gave me her telephone number to contact her once out of hospital if I had any questions, queries or worries about anything, which was comforting.

I think one of the nurses on the ward one evening was the most useful though - she started telling us all she knew...saying that the brain has 3 layers etc. I always felt the doctors were "too busy" on their morning rounds to spend time asking them endless questions - so I never asked until the day before I left - and I was pleasantly surprised at how happy they were to talk.

However, looking back, it would have been nice if a doctor had sat with me for 10 minutes to go through my individual case and explain what happened to me and give me case notes - especially when family are visiting so they can hear it too.

Great idea to make a leaflet - as it's hard for family and friends to understand everything and I'm sure it helps you and them.

Nic

xxx

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