How do you define your stroke?

[cam1960]

I received the survey today about this website and happily joined in. Only one question stumped me. Was my stroke "Minor" or "Massive"? You would think 2 years post I would have figured this out by now, but how is it really defined? My stroke felt pretty massive when I was lying on the floor completely paralyzed on my left side. The docs in ICU seemed pretty concerned. But now everyone around me pats me on the head (figuratively) and assures me how well I've done and how trivial it really was.

How can I tell? Is there a rule somewhere? I keep trying to put this in perspective. Am I overdramatizing? Should I have 'gotten over' this by now? I haven't posted on here for a long while, a little embarassed at my inability to reach acceptance, whatever that is.

Your thoughts?

P.S I put down "minor" on the survey.

Carol

[brain2005]

Hi Carol! I received the same survey and [bTW, many thanks to Steve for being

accountable and open to input from the membership; this is critically important

to the long-term sucess of this entity! BRAVO STEVE!]To address your

question: Don't let anyone, especially non-survivors, family, friends, medical

"professionals," and neuro professionals attempt to "pigeon hole" you as to what

type of stroke you had!! This can be devastating to you and your recovery. VERY

IMPORTANT. You are the survivor! You did the time on the dark side. NOT

Them. After coming back to "reality" and "some limited sanity" after my massive

hemorrhagic stroke in 2005, I started to really get educated about what had

happened and what my options were AND ARE! Stroke is very different from

other disabilities because it involves the brain and many times the resulting

deficits are not "VISIBLE" to the casual observer ... Remember, we live in a very "outer-directed" culture seeking quick fixes to everything. They very seldom have the interest or ability to really see past the surface. Sad but True!

 

I hope some of this helps you in your recovery. Remember: you can be a stroke "victim" or a stroke "survivor" .. there is a difference and the choice is entirely yours to make, NO ONE ELSE can make it for you!

------------------------------------------------------------

I received the survey today about this website and happily joined in. Only one question stumped me. Was my stroke "Minor" or "Massive"? You would think 2 years post I would have figured this out by now, but how is it really defined? My stroke felt pretty massive when I was lying on the floor completely paralyzed on my left side. The docs in ICU seemed pretty concerned. But now everyone around me pats me on the head (figuratively) and assures me how well I've done and how trivial it really was.

How can I tell? Is there a rule somewhere? I keep trying to put this in perspective. Am I overdramatizing? Should I have 'gotten over' this by now? I haven't posted on here for a long while, a little embarassed at my inability to reach acceptance, whatever that is.

Your thoughts?

P.S I put down "minor" on the survey.

Carol

[Guest mjh]

"Massive" or "minor"?

 

I have never used those words in describing my stroke and I do think that these words are used without much of a clear definition. I have asked the question on this forum before about a definition of a "massive" stroke but I don't think I ever got a clear answer.

 

With the possible exception of a TIA, I don't think there is any stroke that can be described as "minor".

 

I think "massive" should be used for any stroke that leaves any permament deficits.

 

My stroke could probably be described as "minor" because it involved only a fairly small amount of blood leaking into my brain. It may have been "minor" because I did not lose conciousness.

 

But it was "major" because of where it hit - in my thalamus. It was "major" because the stroke and its treatment have left behind a trail of wreckage including permanent visual disturbance, permanent burning pain and permanent trouble sleeping, focussing and paying attention.

 

I think "massive" or "minor" should be defined in the context of the wreckage left behind rather than the events of the actual stroke.

[Guest mjh]

I did not see anything in Steve's survey as in any way controversial, I am just trying to come up with a useful working definition.

 

I don't think dictionary definitions are much help. We all probably have a sense of what is "massive" and what is "minor", but it is all relative.

 

To me, the pyramids are massive and an ant is minor. To the ant I am massive and a grain of sand is minor.

 

To someone who never had a stroke, any stroke is massive.

 

To someone who can't walk or talk my stroke was probably minor.

 

It all depends on where you are standing.

 

[brain2005]

I don't see any controvery here either.. Of course, stroke survivors can usually find one or imagine one.. My humble experience ONLY. Again, I applaud Steve and his staff for implementing the survey.

I was not even told by docs that I had a massive stroke. My daughter was told and she told me about a year post. I don't believe that Steve was looking to create any controversy with the demographic survey. If we know what was experienced, fine; if we don't fine. We survived which is ultimately most important.

[cam1960]

I didn't mean to criticize Steve's excellent survey! I don't question anyone else's view of their condition, I just don't know quite how to view mine. I thought maybe there was some obvious definition that has escaped me. Needless to say, my biggest problems are mental :head_hurts: !

Carol

[fking]

Many of us got the survey I think! I always will feel mine was massive and I'm so happy to be a survivor for four years already.

[CagedBird]

i feel like my stroke was massive because it destroyed everything on my left side including my vision and unlike some who get better in a year, i havent gotten much better in 7 years or learned to do anything with my left side other than walk

[Le Hermite]

Hi Folks....

 

I rated mine massive.....

Base that on the effects....

 

My life has been greatly changed......

 

Was a pretty well designed survey, too.......

 

[smarshall]

MASSIVE

 

Susan :type:

[kanderson]

i define my stroke as massive based on what my doctor has told me, along with a vocational nurse, other neurologists i have seen in the 6years post stroke. i like katrina, have been able to walk, but nothing else works on my left side, yet anyway. while going through my lawsuit. both sides had their expert witnesses, neurologists from the best schools in the u.s. in reviewing my ctscans and mri's they testified i had lost at least 25% of my brain from my ischemic stroke. i consider that a massive amount considering what it took from me. yes i still have 75% and we supposedly only use 10% of our brains. i was tested and unable to return to work. short term memory pretty much gone but it has improved some. i do ok now considering. i know others are worse off than i am, so i try not to complain much, and just keep getting better with what i have now. steve's survery was a great one with good questions and he welcomed our input after we took it.

[AllanWilliams]

I look at it with a positive outlook on life.

I'm alive

I'm enjoying life my friends and family etc,

I'm starting a small buisness / hobby at home

I went out for dinner last night for the first tme in months had a fantastic evening

Lost my abilty to drive but with the price of gas these days thats a positive

 

So I must have had a mild stroke

Because there is allways a lot worse off than myself

 

Allan

[bstockman]

I feel the stroke that found my brain ( I REFUSE) t0 call it "MY" stroke.. it entered my life.. uninvited and unwanted... so it is a happening not something I wll call my..ok

 

it was physically minor... and if compared to many it was mentally minor.. but to me the mental deficits were extremely hard to deal with... as I could not return to my career.. People can look at me.. and talk to me and not realize I had a stroke. I have become pretty adept at conceling the deficits... I am less "guarded" with people I am comfortable with... and of course when I am well rested, etc I do much better.

 

I also try to remember ( and my husband reminds me..lol) I am 5 years older than when this first happened .. so some natural aging effects would be happening inthis time period also.

 

I do the best I can... sometimes if I am not up to things.. I avoid situations.. As someone said we can be survivors . or victims.

 

A survey is looking for a kind of average or >>>> mean>>>>>> outlook. Strokes are pretty individual as they take in so many factors, as physical, speech, vivison, emotional deficits.. and I dont think u cn get that into an actual surey.

 

Since we have so many members the questions will give a good average on many levels and questons

 

Thanks to all who complete it

 

Steve is awesome.....

 

 

 

[merichsen]

I defined it as massive even though I didn't have a classic "stroke" from the onset, but rather an aneurysm and subsequent stroke. i classified it as massive because I underwent a seven hour brain surgery, was in a coma after wards with little to no chance of survival. Although I was completely paralyzed on the left side, I can now walk unassisted and have regained all but the use of my left arm.

To some extent I think how you classify it may be a matter of perspective. At the at it was quite catastrophic, now

I am a world away from where I was in NICU and it's hard to believe what happened to my brain was as "massive" as it was.

Just my :2cents:

[teachergirlmaria]

A stroke is a stroke is a stroke -- Massive or minor it is a interuption in your life and the way you operate the ship..........Definitions vary from day to day Somedays when I can do what I want it's minor other days when I'm tired and the right leg is dragging and I can't keep up---everyone is walking and talking way too fast It seems so Massive But it's all in the way you handle it Do what you can and travel on. Don't let others define your life ---March on to your beat whatever it is fast or slow

Be Blessed

 

[Guest mjh]

A stroke is a stroke is a stroke -- Massive or minor it is a interuption in your life and the way you operate the ship..........Definitions vary from day to day Somedays when I can do what I want it's minor other days when I'm tired and the right leg is dragging and I can't keep up---everyone is walking and talking way too fast It seems so Massive But it's all in the way you handle it Do what you can and travel on. Don't let others define your life ---March on to your beat whatever it is fast or slow

Be Blessed

 

Wise words, indeed!

 

[PVINSON5]

WHEN I WAS LAYING IN THE BATHROOM, I KNEW IT WAS MASSIVE STROKE. I CAN SPEAK, LITTLE. WALK, WITH LIMP. ARM, SHOULDER AND HANDS VERY MOODY. I AM FIVE YEAR AND 5 MONTHS POST STROKE. ISCHEMIC STROKE. I BLEED VERY RARELY, MY LEFT BRAIN. MY RIGHT SIDE WAS EFFECTED. MY RIGHT BEING RIGHT-HAND. ALMOST LEARNED MY LEFT HAND. INDUSTRIAL ENGINEER. NO ONE FINDS HOW I STROKE. BLOOD PRESSURE, COLESTEROL, NOT HUGE, ETC.

 

THE THING IS HOW DO I GET WELL?

[danni3]

HELLO TO ALL OR YOU SURVIVOR,I LOVE EVEYONE REPLY ESPECIAILLY (MJH)

[Guest mjh]

WHEN I WAS LAYING IN THE BATHROOM, I KNEW IT WAS MASSIVE STROKE. I CAN SPEAK, LITTLE. WALK, WITH LIMP. ARM, SHOULDER AND HANDS VERY MOODY. I AM FIVE YEAR AND 5 MONTHS POST STROKE. ISCHEMIC STROKE. I BLEED VERY RARELY, MY LEFT BRAIN. MY RIGHT SIDE WAS EFFECTED. MY RIGHT BEING RIGHT-HAND. ALMOST LEARNED MY LEFT HAND. INDUSTRIAL ENGINEER. NO ONE FINDS HOW I STROKE. BLOOD PRESSURE, COLESTEROL, NOT HUGE, ETC.

 

THE THING IS HOW DO I GET WELL?

 

The thing is, PVINSON5, you probably are going to have to live with those deficits - but at least you are living.

 

 

[Phyllis4732]

I find this a very interesting topic. There are some intering responses. I think the answer is how "you" think. Persnally, I think my stroke was minor as far as the area it was in- (cerebellum). I tend to have a scale as far as the area in the brain is concerned). Of course, mine was a bleed and I did not get medical care for about 21 hours with a car ride of 275 miles (weird, I know) Yes, I could have died and even after getting to a hospital, they did not have a neurosurgeon present and had the good sense to move me to one that had one. If I had stayed there, perhaps I would have died because they did things wrong. Then it would have been massive. Actually, I wasn't a candidate for surgery if I needed one unless as a last choice. I read online that a person's blood must be a certain # and I had taken blood thinnersfor 11 years and it probably wasn't. According to the article though, the case is handled by a neurosurgeon who prescribes the medications to see that there is no further bleeding and gives the brain a chance to recover, and I guess, if that does not work, he has to take the chance and perhaps lose the patient. There are people who have bleeds in the cerebellum who do have what could be termed a "massive" stroke. So, it comes down to what we always say- each stroke is different - each recovery is different- each one is looked upon my the survivor as different.

 

How does one get better? Well, the easiest way to start is acceptance and desire. A person who works hard at it can and does show advances- slow, but advances. That person makes the most of what they get. Then, there is the person who just says, I've had a massive stroke and lets it go at that.

 

If a person is walking, driving, working again, the answer is kind of like Maria said- it may have been massive in the beginning bt isn't in the end.

 

Phyllis

[stessie]

Phyllis

Enjoyed your post. How true!

Stessie

[glaidice]

Phyllis, you are so right. I was not suppose to last thru the night - massive stroke due to a brain bleed. I remember the Priest giving me last rights - coma for 3 days - but the bleeding stopped on it's own thank God and here I am almost 5 years later, living alone, walking reasonably, climbing stairs, driving, cooking, reading, etc., about to fall in love again LOL, so you just never know.

[moonlight]

I know mine is "massive" because my nurse told me so. My doctor also said I had so much bleed i might not survive through the first night and told my daughter "Even though your dad might survive the stroke, he will never be able to walk again" which made my 12 yo daughter cry standing in the corner of the hallway all night long.

6 yrs post stroke, i still can't walk nor can use left arm and left fingers in spite of my ceaeless efforts to improve those disability. No matter what you deep thinkers say philosophically, i believe mine is massive. A massive stroke is a massive stroke is a massive stroke. No way out there. ej

[Sudz]

Hi I have to say: MASSIVE OR MAJOR

Dgiant 1.5" golfball size anneurysm

Doubtful I would survive rupture

13 hrs brain surgerywith mid cerebral artery clamped off great portion of brain was starved.

Had to leave a piece of bone ourt in freezer for 3 months for brain swelling to decrease

3-4 wks in ICU

6 months in hosp

Figured thrthey wouldonly release me to nursing home.

 

Much more physical than mental problems,

When I tp;d neuro doc abouth this ssite I told him there weren't many on with my level of disab.

Didn't surprise him told me most with this degree couldn't/wouldn't be able to be on also co-worker had to resussitate me prior to ems arrival

 

Susan

[myhome]

You know I read the question four or five times and think it's the other way around than the question above, my stroke difined me. I'm not the same, my sex life is basically in slow motion, my love life is stronger than ever. I can't do what I want, I attempt to but know in the back of my mind I can't, and really shouldn't try but I'm stubborn.

I can still do alot of things as before, but get tired too quickly. If I push myself I pay for it the next couple of days. All in all I'm lucky to be alive, but haven't really thanked the one I should.

I have only a few friends, but those few came to the hospital when I needed them, I think that's what it's all about. So to define my stroke, to me isn't as easy as it seems.

 

Sorry for getting so philosophical