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This is the song that never ends

Jun 25, 2016 - 2 comments

This is going to be LONG and possibly dramatic because.  Maybe I'm dramatic. Before my first decompression surgery in 2013 ... I literally had no memory of headache free days.  None.  Apparently I was even a toddler that hit her head before I could explain that my head hurt.  So I had a pretty extensive and traumatic workup as a toddler at Texas children's.  The only thing they found was retinopathy.  I had some laser treatments for blood vessel overgrowth in my retina ... every treatment just made them come back worse, so we stopped.  All I learned from this fiasco is how to avoid the doctor.  For about a decade, anyway.  

I was in a serious car wreck with my family when I was 12.  We were hit by an 18 wheeler and spun 3 times on our way back from a vacation in Colorado (I will always have a place in my heart for suburbans before they were made out of tin foil) I was the only one hurt ...  I hit my head on an ice chest that was at my feet and did something to my shoulder that I barely remember.  that retina that caused so many problems detached finally and my headaches got a lot worse! I woke up with it and went to bed with it.  Since they did get worse I was ready to try and figure out why, again.  Scans and blood work and multiple doctors only found my detached retina.  I had I think 6 surgeries to try and reattach it.  My head still hurt all the time.  I went to a couple neurologists who took one look at me ... a 12 year old GIRL that can't possibly be anything but depressed or hysterical or have any idea about real pain.  I was made to feel really and truly ******* crazy.  So I gave up.  Again.  Maybe I was crazy.  

Fast forward another decade.  My headache had placed serious limits on my functioning.  I knew something was wrong but I didn't want to have to convince anyone of it just to be told I'm depressed or whatever they wanted to call it.  But I went to a new neurologist.  My first as an adult.  I put it all out on the table.  He listened.  He ordered MRIs and there it was.  I was so angry and relieved at the same time.  All that time.  All that pain.  and now, a possible solution.   Yeah, it was brain surgery, but after a lifetime of being stifled by a head that threatened to explode regularly, I wanted it more than anything.  

My pre-op testing uncovered some arrhythmia issues I had no idea about .. so I spent about a year getting my heart under control, and ended up with a pacemaker.  I barely notice it.

My insurance changed and the neurosurgeon I was seeing was no longer in network.  Fine, whatever, I found one I might like better anyway.  Dr. Dong Kim in Houston, TX.  I feel fortunate to live so close to the Texas Medical Center.  But the hiccups that I've experienced with his hospital system .... are so, so, SO ******* disappointing.

He decompressed me in 2013 .. I think October ... and I woke up, for the first time in my life that I can recall, without that headache.  My head hurt, but THAT particular headache was gone.  Really gone.  I didn't expect it.   I remember him saying that the longer you have symptoms the less likely they'll go 100%.  Not only that, but some numbness in my arms and hands got better.  Swallowing got better.  Balance got better.  For about a year, I finally knew what it was to be marginally HUMAN.  Until it started again. I was diagnosed with hydrocephalus and an LP shunt was placed .... lots of revisions on the tubing .... a second decompression which clogged thew second LP valve ... a VP shunt placed ... clogged ... and just replaced this past Wednesday (June 22, 2016).

My beef comes from every single procedure ... the pain control that I don't receive in the hospital (usually the neuro ICU) ... EVERY single time.  without fail.  Every time I think it will be better this time, it has to be, right?  they should learn from last time?  No.  So I've never taken ANY long term pain medication.  The only time I want pain control is after surgeries.  I'm not an animal.  Make me ******* comfortable!  No matter how many people I express my concern with or how many people reassure me that I'll be taken care of, it still falls through, every time.  This latest stay takes the cake, however.  During prep they send the anesthesiologist and the nurses that will take care of you in to ask questions ... I was clear about MORPHINE being useless for me.  It has never worked, since my eye surgeries as a young teen, we've known this.  Guess what was ordered for me when I got to the neuro ICU?  Yep.  Morphine.  I freak out and refuse it, knowing there will be a bigger delay if I let them even try the morphine.  They get dilaudid ordered.  But it's .5 milligrams every couple hours?  My last shunt surgery gave me a pain pump with that same dose every 10 minutes and it BARELY cut it.  So of course that didn't work.  So they offer me.  ORAL TYLENOL. I've been throwing up for weeks and they offer me oral extra strength tylenol.  The whole time I'm in ICU.  I think once the "migraine cocktail" (morphine, benadryl, phenergan I think) .. ummm ... My head was just sliced open.  I don't think the pain I'm experiencing is a migraine.   I BEGGED to be discharged because I would have accepted a grenade gelcap if it was available to me.  I am still shocked at how horrible this time was.

And I always thought it was just me ... but my mom met someone in the waiting area and a woman outside who was crying.  Her husband just had his first chiari decompression and they weren't controlling his pain.  She said he was suffering so much and she couldn't take it.  So it's not just CRAZY me .... this hospital has some serious flaws in pain management.  It is unfortunate that most of us spend a large chunk or our lives suffering, only to be treated like junkies when we are so vulnerable and when our suffering could so easily be relieved.  There was a point where I couldn't calm down and a couple of the nurses were smirking.  It's probably good entertainment.  But what the crap?  really?

The cake?  At discharge the nurse offered me my last dose of oral tylenol and I said no thanks.  and I'm discharged with the strongest dose of norco available.  THEY WOULDN'T GIVE ME ANYTHING IN ICU?  but they'll send me home with it?  so why was my pain not controlled after surgery?  This is not okay?  This is the Memorial Hermann hospital in the Texas Medical Center.  All my "recoveries" are horror stories but this time the bar was lowered pretty extensively and I still don't know what, if anything, to do about it.  

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620923 tn?1452915648
by selmaS, Jun 26, 2016
Sorry to ask this but was Ehlers-Danlos ruled out for you?

You may have told me but with a Chiari brain I do not always remember.

But it could explain why the meds do not work and why you have retinal detachments....and possibly why your shunts are failing you.
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&cad=rja&uact=8&ved=0ahUKEwipi6jb6sbNAhVE7SYKHeyZCIgQFggzMAM&url=http%3A%2F%2Fwww.ehlersdanlos.ca%2Fehlers-danlos-syndrome-the-role-of-collagen-in-the-eye%2F&usg=AFQjCNHYhAZdOEJA_F-hZzFzkkf1IQ4-Nw&sig2=xblC5f0xQZrFHqv3zpa9WQ&bvm=bv.125596728,d.dmo


4760166 tn?1398357313
by The_beat_goes_on, Jun 26, 2016
I do have Ehlers Danlos ... however, it is seriously JUST this hospital system.  For all my heart procedures my pain was really well managed.  The couple ER visits that weren't Memorial Hermann my pain was taken care of.  And I think that's what is so infuriating.  I've gotten more pain relief from the ER than I get after brain surgery.  There was a point after the "migraine cocktail" that I passed out.  It was pure exhaustion from screaming and crying, the head guy from the pain (mis)management team thought it was because it "worked" ... but really it was just collapsing from exhaustion like a child.   I really like and trust my neurosurgeon.  But my mind is still blown over the Tylenol.  Then to be prescribed the strongest dose of Norco I've ever had in my life was pretty insulting.  If only they would have even offered THAT in ICU after surgery I wouldn't be so traumatized by the pain. There was another girl screaming in pain at the other end of the hall .. and my mom met a couple others with the same problem.  It's barbaric.   Looking back at all these surgeries there ... I don't think I've ever been scared of any procedure itself, but I'm always terrified of waking up in pain.  Maybe I really am crazy.  Who else would stay chained to a hospital that just doesn't seem to give a rat's ***?

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