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scottm

I hate it when the doctors say that

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I had an appt. with my neuro yesterday who like most of my doctors I really like as both a doctor and a person. Then he said the thing that everyone of my doctors has said at some point that just really upsets me. "You shouldn't be alive, not many would survive what you went through yet here you are and you can walk and talk, even if you don't always feel lucky". I know that they think it is supportive but it really disturbs me. For some reason having that pointed out to me is both unnecessary and insensitive, I was there and lived it in real time. I embraced the fear and pain and made it a part of me to drive me forward. Believe me, I'm aware of how bad I was and how far I've come, don't make me remember that dark road. Please?

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It's the doctor equivalent of "you're looking good" and in some ways worse because they are supposed to understand.  The reality of this is we have to keep looking forward. As you say looking back is just scary.

((HUGS))

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Scott, i'm WITH YOU ON THIS ONE 100%.  Becky

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Scott, I'm with you 100%.  I hate it when people say "you are doing so well".  They do not have a clue what is going on inside, they can only see the outside and, even then, they only see what they want to see.

 

I try to just nod and move on, but not always.  And my wife can get quite upset:

 

I was at my neurologist last week.  His student did a *very* rudimentary exam, then reported that I was "doing really well" and everything was great.  Compared to most, that's probably true, but it is still far from "doing well".  Linda was there with me, and absolutely laid into the poor student:  "He's not doing well!  His brain is *beep*ed!  This is a horrible situation for him, for me, and for our family and friends.  This is not 'well'".

 

I keep that in mind whenever my sister-in-law explains to me how well I am doing (but I don't say anything because family feuds and all that).

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Scott, post stroke I went in to see a therapist to try and make sense of the new "roller coaster" emotions that often had me tearing up over issues that would have been but water off a ducks back pre-stroke. During some of those first sessions I'd often start weeping when describing the whole hospital experience. I found myself a bit embarrassed, but was assured it was ok to share these emotions and experiences. She diagnosed PTSD and I was inclined to reluctantly agree for the most part. She put this in her notes and gave me a written copy which came in useful for my doctors and disability insurance. Like you, she encouraged me and mentioned in similar words what you described. It would open the flood gates when she would mention the words lucky, or bing thankful as it would have me relive those moments, my family who were there at my side, before and after the surgery. For the most part, I don't for a minute want to remember or relive those days. I'm reminded enough every day. They are however a part of me always, though buried as deeply as possible, I'd like to forget, but it comes up now and again, family members may recount the experience at a family gathering. I know it's not to be insensitive, but also I've recognized it's a part of them that they'll never forget either. In my sister's words when she says how worried she was that she might have lost me...always gets to me.

 

 I totally understand your reaction and agree completely with your feelings. It does get better with time but not erased. I've no doubt that it will come up at some point again, maybe with another doctor or specialist, where asked about the experience and how I'm feeling, I wonder if at some point I will be able to feel less attached to that experience without the emotions.

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I can sorta see their point as my case was unusual in that my stroke happened while I was having openheart surgery so it wasn't until the next day when I hadn't woken up that they realized something was wrong. By the end of the week and I still hadn't woken up my survival chances were rated < 10%. I came back but it has been a long road I'd just as soon not relive. Thanks for understanding everybody.

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You have every right to feel upset when he reminds you of what happened.  You also have every right to be upset when he tells you how lucky you are.  Yes you are luck (you are alive) but that doesn't negate the fact that you were also seriously unlucky (you had a stroke).  And while you are lucky to be alive, you are also still seriously unlucky because of the deficits caused by the stroke.

 

Don't let them minimize what you have gone through and are going through.  YOU can do that; it's your life, your brain, your body.  THEY do not have the right to tell you how you should feel.

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21 hours ago, heathber said:

It's the doctor equivalent of "you're looking good" and in some ways worse because they are supposed to understand.  The reality of this is we have to keep looking forward. As you say looking back is just scary.

((HUGS))

Sadly, most in the medical field lack 'bedside manner'. I can speak for myself, we were always taught facts and when you tell someone a fact.. it's not sugar coated. But it bothers me when someone says ' you're looking good'. But again, speaking from medical field,  their not looking at the over all how you are in comparison to the person you once were but ..... think of it like this

 

A plumber comes out and fixes your pipes. Your toilet was clogged. It flushes now but not pretty, like it once did. But flush nonetheless.

A Neuro is just making sure the brain functions are working .. Your body is another function. Like a contractor would have to fix the pipes throughout the house to make it a smooth flush.

 

I hope that makes sense. In my mind, it made perfect sense lol 

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5 hours ago, scottm said:

I can sorta see their point as my case was unusual in that my stroke happened while I was having openheart surgery so it wasn't until the next day when I hadn't woken up that they realized something was wrong. By the end of the week and I still hadn't woken up my survival chances were rated < 10%. I came back but it has been a long road I'd just as soon not relive. Thanks for understanding everybody.

Scott, may I ask about your open heart surgery. Until this last Sept of 18' I've never had any kind of heart problems, then had a minor heart attack out of the blue. The procedure surprised me as it seemed so routine for them to go in with a catheter and clean out some valves and install a stent. A big difference from open heart surgery. What happened if you don't mind me asking? 

 

Anyway, glad to see your still on this side of things and my best wishes for continued recovery.

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Scott, your story gave me goosebumps just reading it.  Really glad that you survived, and hope that things keep progressing.  Very scary stuff!

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Will2,

 

My surgery came about because I took an antibiotic the dentist gave me that day, somewhere along the line I had acquired a severe allergy to it and went into full anaphylactic shock. Note: being intubated while awake and throat is swelling shut==not fun. Anyway, it so stressed my heart and triggered afib which made clots. Off to the cath lab where they found my arteries mostly closed off. At some point in the surgery they knocked some plaque loose and it went to my brain. This is what I've been told as my memories end before EMS even got me into the ambulance. They restart vaguely about a month later. I'm that 3% chance of bad outcome they talk about during informed consent...

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Holy crow 😵

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Sorry Scott, that really stinks. I have tried to figure an exact cause for my brain bleed which I know is dumb because I will never know an "exact" cause. Knowing a reason like you do would give me small anger issues to deal with. In the long run we're both where we are Thursday November 14th 2019 in the condition we're in regardless of how any of us ended up here. Keep hanging out here all of you with your "new friends."

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We can accept where we are and move on taking our victories where they come or just be resigned to it admitting defeat. I prefer the former over the latter.

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any day Scott, generally speaking why doesn't matter but our psyche likes to know anyway.

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On 11/7/2019 at 10:12 AM, scottm said:

Will2,

 

My surgery came about because I took an antibiotic the dentist gave me that day, somewhere along the line I had acquired a severe allergy to it and went into full anaphylactic shock. Note: being intubated while awake and throat is swelling shut==not fun. Anyway, it so stressed my heart and triggered afib which made clots. Off to the cath lab where they found my arteries mostly closed off. At some point in the surgery they knocked some plaque loose and it went to my brain. This is what I've been told as my memories end before EMS even got me into the ambulance. They restart vaguely about a month later. I'm that 3% chance of bad outcome they talk about during informed consent...

Scott, what a horrifying series of events. The OR had to be hopping to stay on top of that cascade of problems. Glad you're still around to share your experiences. If you were a "spiritual type" I'd guess that the OR were packed with angels and keeping you above ground to complete a divine plan that's in play. I'm a rooted believer and definitely fit into some plan yet to unravel, others call it luck. However you look at it, it's good to have you around!

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Will2,

 

Not something I often discuss but while I was in a coma I remember having to make a decision to go on or go back, I chose to go back and woke up shortly thereafter. What that means I don't know.

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On 11/9/2019 at 11:56 AM, scottm said:

Will2,

 

Not something I often discuss but while I was in a coma I remember having to make a decision to go on or go back, I chose to go back and woke up shortly thereafter. What that means I don't know.

Scott, I'm fascinated by NDE's. I enjoyed both the movies "Miracles from Heaven" and "Heaven is for Real" where the kid's both have NDE. To have those type experiences and share them in such detail afterwards really has to make one wonder, even to the unbeliever. Me personally I'm convinced that miracles are real.

 

Sorry, I deleted much of my post as not to come off as too much as overzealous religious person. I just would add that I totally believe you Scott.

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