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Glad to have found you guys....JCMatson


Jcmatson
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I experienced a non-aneurysm SAH on the evening of March 8, 2015.  At first I thought it was simply a stiff neck or pinched nerve that caused a huge headache.  I went to the local hospital emergency room and waited for a few hours until an ER doctor called me in.  They did an immediate CT Scan and the next thing I knew I was in the ICU, saline drip hooked up and several nurses hovering closely.

In those two weeks I have tried to do online research and have found most the topics are clinical descriptions.  What struck me when I found "behind the grey" was a resource that finally began to describe recovery and what is next.  It is still early days for me, but I am thankful for finding BTG and look forward to sharing this new journey with new friends.

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Hi JCMatson :)

 

A very warm welcome to BTG....glad you found us !

Feel free to post any questions you may have on the Forum and join in the daily banter in The Green Room.

 

Look forward to hearing more from you.

Take care,

Tina.

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Hi there, a warm welcome to BTG - certainly a good place for the realities of recovery, written by those who have first hand experience of the aftermath of a sah.  You will find plenty of good advice on here.  This all happened very recently for you, so it's good that you've found this site so early on - it took me over a year to find!  

 

Wishing you all the best on your journey of recovery,

 

Sarah

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Hi welcome to BTG. I too suffered an NASAH on 10 Feb 2015 so am about a month ahead of you. Did you have any  drains put in or any other side effects. I had hydrocephalus and and EVD and am not sure if that is why this seems to have affected me more than other people with a non-anuerysmal SAH. I expect you are suffering from the dreaded fatigue, rest plenty and drink water!

Look forward to hearing from you re your recovery.

 

Clare

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Hi JC,

 

Scary isn't it, I had an SAH and was out for a while, until shunt was fitted.

 

This is a good place to come and rant if you need to or just understand Why !!

 

You will get better but its long haul, so no stress as my surgeon said to me.

 

Wishing you well and sing when down xx My answer to all problems.

 

Good luck

WinB143 xx

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Hi,

 

Welcome to BTG!  You'll find plenty of support on here - simply because we know and understand what you have  experienced because we experienced it ourselves.  We're not doctor's though and we can't give you medical advice, but we can tell you what we went through and how it affected our lives and those of our nearest and dearest.

 

As others have already said, recovery can be, and usually is, a long process. Everyone is different in this respect but I am sure everyone will give you support, so please continue to look around the site and post when you feel up to it.  Good luck with your recovery and let us know how you are getting on!

 

Macca

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Hey there

 

Welcome to site and to the family.  Glad you found us, but we always wish that you wouldn't have had to.

 

Loving the pic by the way - you seem like you have a sense of humour and its important to try and keep that as much as you can - you'll be surprised how much it can help.

 

Chat soon

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Thank you all for your comments and words of support.  Being that I am in Los Angeles, it is interesting that many of you seem to be in the United Kingdom.  I was looking forward to waking up and seeing if anyone posted back and I was not disappointed!  Thank you for the support.

 

In response to the specific question Clare - no, I did not have any drains installed.  And yes, I am in the process of learning my stamina tolerance all over again.  My main focus is on trying to string together more hours of sleep.  I am able to do 2-3 hours but then wake up.  I assume I may be able to increase the pain medication to possibly mask, but being an engineer I do not want to give up that level of control.  

 

To date my neurologists are advising "wait and see" until they do the next scan and see how fast/slow the blood is breaking down and being reabsorbed.  That is an odd sentence to type - but it is comforting to know that this audience actually understands it.  

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I'm from Ohio and had a NASAH 3 1/2 years ago.  

 

Sleep is still an issue for me, but I don't take anything for it.  I do have the luxury of being able to rest when I do need it, though.  I do have to say it is better than it was at first.  I would fall asleep so early and then wake up at the end of a sleep cycle or 90min.  Then I couldn't go back to sleep.  Now I go to bed at a normal time and sleep through several cycles, but still wake really early in the AM.

 

Here's to recovery!

~Kris

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I had two very odd experiences today.  For reference, I had my NASAH on March 8 - so I have 17 days of recovery.  I am still in the process of first round doctor follow-ups.  I have a neurologist assigned since to date they have found no source for the bleed.  I also have a neurosurgeon in case a source appears.  So today I went to see my neurologist for my first follow-up.  Now mind you, he saw me twice in the ICU over 6 days and completed an EEG and one other test.

He walks in the room and looks at me with a completely blank face and asks what is my reason for the office visit today?  He did not recognize me, he had not read my chart or tests and thought I was a new patient walking in off the street. Eventually he recovered, read the tests and began to play out the patter of expected recovery paths.  
 
The second doctor visit was very different.  Separate from the SAH, about 6 weeks ago I suffered a rupture of my left ear drum.  Since the SAH required numerous scans, the test results provided great details on opacified mastoid cells in my ear.  So I was referred to an Ear, Nose & Throat specialist to address.  While the ENT nurse was inducting me and taking my medical history, she got quiet and left the room.

A short while later she returned, somewhat subdued and obviously upset. She was very timid and wondered if I would mind sharing with her any information about the SAH I had experienced.  She shared that over 20 years ago, her Mother was suddenly struck by SAH and she passed within a few hours on the way to treatment. She had never met any other person in 20 years who had experienced a similar condition and she wondered if I would answer her questions.

She was clearly still struggling with the sudden loss of her mother 20 years on and as a professional working in the medical community.  When wanted to understand things about pain, did she suffer and why was it so devastating.  I could only share my experience and also point her to this excellent support group that seems to provide an emphasis on recovery rather than clinical facts.  
 
It was such an odd contrast between human interaction within the span of a few hours that it really brought home to me the frailty of life and an appreciation of what you here at BTG have accomplished.  My recovery continues....and the sky was a little more blue today...
 
Regards,
 
john

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John, you will have helped that lady today. Bravo! We are the fortunate ones, hard though some experiences are but just to be seeing that sky and for you to be able to reassure that person is wonderful.

I was with someone when I had my Sah whose partner died from an sah and she recognised what I described and what was happening and was the reason I received such prompt attention. Since then we have met a few times and she said it helped her make sense of her loss a little more but also comforting to know a bit more about it. Strange how life unfolds , surprises and challenges us

I haven't welcomed you to BTG , we share a SAH anniversary , also international women's day !! Mine was 3 years ago on 8th March.

Take care John, steady, easy does it and keep looking up at the sky and enjoy the moment.

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John,

 

As Daffs has said you have helped someone.

 

My Daughter said to me welcome home Mum and gripped my arm after I woke up from shunt

being fitted and we both cried, she told me all what happened in that year and how worried

everyone was as I had Sepsis and Ventriculitis.

 

I told her I saw my parents and how my brother sang to me and she said "Oh thanks Mum you was partying

while we were worrying over you".   A dream maybe !

 

Keep Well and happy

Winb143 xx

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John, you are so right about contrasting human interactions, and it seems so odd when you can have such a huge variation within the medical community. I don't know about you, but I tend to tell anyone new that I'm meeting, about the SAH and it surprising how many people have some knowledge of someone else who has suffered such a brain "insult" as my GP called it. I never cease to be grateful for the fact that I'm still here and the way in which I'm recovering. Life really is fragile and needs to be grasped and treasured.

Finally, I love your profile picture! It reminds me of Hugh Laurie as House, in one of my favourite TV series. :)

Mx

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John!  I'm so glad to meet you but so sorry it was in this way.  I have a friend named JCMatson here in Illinois.  He is one of the funniest people I have ever met.  So glad you still maintain a sense of humor.  It will help you so much.  I have read your posts and chuckled at your sarcasm over your dealings with various people.  It is amazing how much craziness is out there,  isn't it?  I wish I could tell you some of my stories of my 6-1/2 week unscheduled visit to my local hospital but quite a lot would be censored by one of the moderators...lol.  

 

So - I lived in Orange County, CA for 28 years....Westminster, Fullerton, Placentia, Anaheim, Santa Ana, La Habra...more but it's wearing me out just trying to remember them all.  (I was a bit "independent" in the 60's and early 70's..lol)  One more place that you might laugh at = Hollywood (right behind Aquarius Theater - Hair was debuted there in 68 Win...Age of Aquarius..now you can sing it)  I ran away to Sunset and Vine at 15 and then ended up in Brentwood-ish area.  They found me three months later which launched a lot more moves...lol.  My sister was a wonderful environmental artist in Venice -traveled to Europe, NY, etc. with her exhibits.  At any rate, I wanted you to know I get where you are from.

 

So....when I had my first son - 33 years ago - we moved to my husband's original home base - danville, IL.  Then......we couldn't get out!  lol.  We left California to get away from all of the thugs in LA...hahaha.  Now in Champaign/Urbana which is a very nice place.  

Enough about my California connection.  What hospital did you go to?  Some of what you went through sounds so crazy but so typical of our dealings with "professionals or customer service" these days.  

 

I had a subarachnoid event June 3.  One aneurysm was coiled but they found 2 more so had to go through coiling process.I ended up with a shunt also.  I don't remember 5 weeks of my life.  Luckily - and after some crazy stuff which I will relate to you later - I ended up with one of the best neuro-surgeons in the US.  He saved me - along with some of the best nurses on the face of the earth, I'm sure.  I had a collapsed lung, feeding tube, etc.  I also acted like a fool every chance I got if I came out of my coma for a minute.

 

 So...had a follow-up angiogram a month or so ago and they found a new aneurysm blossoming in the same area as my others.  I am having a brand new procedure called pipeline on April 21st.  This will route my blood flow to the left of what I call my Junkyard and avoid having the blood flow slamming into the other stuff all of the time.  Jeez.  

 

I have to make dinner but would really like to follow you as you go through your healing process.  Feel free to PM me any time.  Along with the others, I would like to suggest you visit the Green Room.  I think you will enjoy it and Keith will make you hungry every day so stock up on food.  Careful though!  Win is looking for more choir members!  Get out your songbooks.  

 

Much love and huge hopes that you feel better every minute of the rest of your life.  

Carolyn 

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Carolyn,

 

Thanks for the followup.  I know Champagne-Urbana as I went to college down the road at Purdue in West Lafayette Indiana and we took a road trip to the school in 1981(?).  I live in what is called the "south bay" of los angeles - Palos Verdes (green hills) to e exact.  

 

The hospital that treated me is Torrance Memorial  - a very well developed complex, however it does not support neurosurgery.  So when I went to the Torrance Emergency Room and was in the process of being diagnosed, they were scrambling behind the scenes to determine what neurosurgery center they could transfer me should I need a coiling.  

 

It turned out that I did not need coiling so the admitted me to the Torrance Memorial ICU and began the medicated "watch and see" program.  "Feel and see" is more of the program I am currently following.  I have continued to have problems getting timely CT scans approved and scheduled by insurance.  I try not to let that bother me too much, as the real progress is occurring naturally as the blood naturally reabsorbs.

 

 The Scans are simply time markers of progress - but I have not had a scan update in almost two weeks.  Now that things seem to have stabilized, new questions are beginning to emerge.  I still have no "reason" nor source.  I have no clue about future vulnerability and I need to do some research around re-occurance for NASAH patients over what time horizon.  Which reminds me of some google searching I should go do.  It is midnight here in LA - so good web night owl surf time!

 

Regards,

 

john

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Glad you and CarolynUSA have met up John she is good fun.

 

Do not believe in all you read on Google, or you will get scared, well I did.

 

Just sing a happy song and don't get down xx if possible. 

 

Song Time ~ Father and Son by Cat Stevens okay he has changed his name but I cannot remember it.

 

It's not time to make a change just relax take it easy

Your still young that's your fault there's so much you have to know

Find a girl, settle down, if you want you can marry

Look at me I am old but I'm happy.   Check words !!  ha ha

 

All the Best

 

WinB143 x

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Win....I love that song!

 

So good to see your post today John.  Love the campus area at Purdue.  They have a good mall in West Lafayette that I used to drive to at Christmas - and plenty of restaurants which are one of my favorite things ever.  My first 7 years were spent in Niles, Michigan.  Then in 1960 we sold most of our stuff, packed up our station wagon, hit route 66 and ended up in San Diego right on Mission Bay.

 

 Within weeks of our moving out the apartments were torn down to build Sea World.  I've always felt so important about that...lol.  Next stop = Torrance!  So I know Palos Verdes.  We only stayed a year as it was just a pit stop.  So bought first home in CA in Westminster.  It was 1961 and 3 bedroom home with den, dining room, kitchen, living room, etc.  was $18,000!  Can you imagine?!  Where I lived is entirely Vietnamese now.  

 

Glad you didn't need coiling, etc.  If you feel you aren't getting enough care to make you feel comfortable about your health push for more attention.  Grrrrrr on insurance issue.  I worked for Blue Cross for years and am aware of all the cr-p that goes on in insurance industry.  Keep calling if you are not satisfied.  Ask for manager.  That always makes them get busy.  lol  I did a lot of Google searching about my symptoms before I found this site and am so happy I did.

 

I have learned so much here and found so many people that have exactly the same symptoms as I have.  I will admit that sometimes Win says some Cockney things that I have to look up on British Urban Dictionary site....lol.  

 

Okay...I admit it...the first time my surgeon said the words "pipeline"  I started internally humming that song and have trouble getting rid of it now.  lol.  One day in Huntington Beach a group of us went "grunion hunting".  One of the guys had a guitar and played that song.  It was pretty cool...although I don't really enjoy catching buckets of any living thing just so we can massacre them.  haha.

 

Take care all of you.  Keep positive John.  Write back when you get a chance.   :)

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Thanks for the song Win.

 

Carolyn - we seem to have travelled the same paths years apart.  I had friends from Niles while at Purdue and went from Purdue to La Jolla and spent many years surfing from Mission Bay up through Pacific Beach, Tourmaline and up to Blacks and Del Mar.

 

I finally got some movement on insurance today and I will get my next scan done Monday, March 30 with a visit with my neurologist on Thursday April 2nd to read the results.  So I have another week of taking it easy.  I have been spending my days re-connecting with friends who have drifted away over the past several years and am enjoying content-filled conversations that have been too long about the weather.  

 

I think that I shared that I am also a Scoutmaster for our local Boy Scout Troop.  I found out that one of my Scouts had an emergency appendectomy yesterday at the same hospital where i was in ICU two weeks ago.  I was able to go by today and visit the Scout and then also stopped by the ICU and said a very big thank you to the ICU nursing staff that took care of me for the oddest week of my life.  They were very grateful to see an SAH patient walking, talking and smiling back amongst their midst.  They were able to also fill in some time gaps during my stay that will help me in assimilating this whole surreal experience.  

 

Thanks to all at BTG...it is comforting to know that as I type these words into the void - there are those out there who understand.  

 

Enjoying each day....

 

john

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Update after visit to neurosurgeon...two and 1/2 weeks after being discharged from the ICU I was able to get a follow-up office visit with the neurosurgeon who oversaw my treatment.  I had an NASAH on March 8.  He showed me the CT Scan from the Mar 8 comapred to a Mar 30 CT Scan.  The news was good - all blood has been re-absorbed and there is no residual impact from the NASAH.  He said the technical term for my diagnosis was perimesencephalic-nonaneurysmal-subarachnoid-hemorrhage and that I was a very lucky man.  

 

He immediately stopped all decadron, keppra, nimotop and any other drugs and told me that I have no restrictions going forward.  Any activity that I was comfortable doing prior to March 8 should be available to me in the future.  To say that I am relieved is an understatement.  I have shared here that I had to go to the ER a few times due to blood pressure fluctuations - he said that those problems were in no way associated with the NASAH recovery.  They were unfortunate interactions with the pain meds that were proscribed in addition to the steroid and other drugs.  I am happy to leave all of those pain and other meds behind.

 

I look forward to my stamina returning as I begin to resume normal daily activities and work. Thanks to all at BTG for the support and forum to share and learn.

 

Feeling very blessed,

 

john

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