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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.  

2016.  A bumpy start.

Feb 03, 2016 - 1 comments

So .... a symptoms post for my future reference.  My LP shunt has been deemed NOT WORKING.  I am scheduled for a revision/replacement on the 17th of this month.  My headaches never improved after the last decompression (11-18-15) and my nausea never got better.  I tried more steroids ... but an LP showed my pressure was elevated ...  and I probably knew that it wasn't working.  I was just trying to ignore it.  Big signs for me:


extreme! nausea.

pulsitile tinnitus (ringing in my ears in sync with my pulse ... sounds very much like an unbalanced ceiling fan)

bladder retention like CRAZY! which makes me wonder if my cervical syrinx has re-filled due to this high pressure? that is one thing that got rapidly better after the second decompression.  For probably a decade I've had what I would call a "shy bladder" ...  Suddenly I could empty my bladder without the struggle.  The struggle is BACK and exasperated because I'm spending most of my time a little dehydrated.

So my LP shunt.  The first one didn't even last a year before it broke ... the end in my back dislodged and the catheter was seen floating in my head.  it was replaced and due to abdominal pain .. revised a billion times.  That was in september, when the second shunt went in, I think? so it lasted less than 3 months.  My NS thinks the decompression surgery clogged the shunt this time /// but I'm starting to consider giving up on the LP shunt and getting a VPL shunt (ventricle to pleural cavity)  before the last revision my NS mentioned my lungs as an option ... I don't think my heart is on the table because I am 96% pacemaker dependent and the catheter would have to share my right atrium with a pacing lead.   There is not a lot of information about VPL shunts but maybe it's time to give up on my abdomen.

No answers, and even MORE questions

Dec 07, 2015 - 0 comments

Today I saw my neurosurgeon's PA.  My tremors are worse than even I knew they were.  She said it was like my nervous system is in shock, everything was in spasm, even the muscles in my neck ... from a possibly collapsing syrinx.  She mentioned looking up spinal cord injury and that I would probably recognize most of the symptoms as ones I have.  I am not going to do that.  Her theory is it's neurons firing that haven't had a chance to, causing spasms, and that it might get worse before it gets better.  Even my eyelids, when I close my eyes.  She called Dr Kim and we waited for him to get back to her.  It's something he wants to see for himself, tomorrow.  He only has clinic on Tuesdays.  She doesn't know if he will order an LP or MRI or what ... I almost fell walking out of the appointment.  I told her I was scared of taking anything for pain because I didn't want to get more dizzy and she told me to take 5mg of VALIUM, go home, don't walk, and come back tomorrow to see Dr Kim.

My appointment is at 3:15 ... which is SO late.  I don't know if they'll admit me for testing or maybe its something that can wait.  The good news is.  I have no fever.  My vital signs were picture perfect.

ONE crazy thing the PA mentioned.  I had a CT back at the end of August because my headaches got much worse, quick.  I went to a local urgent care place on August 29th.  That transferred me to my surgeons hospital ... It was a seriously violently bumpy ride.  But the CT.  She said compared to then, and my last MRI on November 5th, my herniation was much worse.  What in the world could have caused that?  In two months?  The only thing that happened, they discovered,  was my LP shunt broke ... and the CT scan with less herniation says "A subarachnoid catheter fragment is again demonstrated on the left side of the posterior fossa."  so I went back and tried to find pictures of it.  It was all replaced September 3rd, only a few days later.  But how did my herniation get significantly worse in that short time frame?  I'm adding pictures of the CT that I found, and a snapshot of the report.  To go from THAT.  To next day re-decompression .... in two months.

Another thing I noticed.  Because obviously I'm not SHOWERING.  When I put my head back in the bath tub.  It almost felt like I could pass out.  I don't think I would ... but I didn't try to replicate that feeling more than three times.  Yes, three.  I'm anxious and tired of the familiarity of my neurosurgeons office, and Memorial Hermann.  

two weeks three days

Dec 05, 2015 - 0 comments

I FELL.  Yesterday.  more of a stumble than a fall.  outside, on soft leaves, on my butt.  I was fine.  but i've been more dizzy.  overwhelmingly dizzy.  it comes in waves.  and they are hot and cold at the same time.  Almost like a rush.  it is the second time it's happened since my second decompression surgery (11-18-15) but I attributed the first time to narcotics.  I hadn't taken any since Thursday morning because I wanted to know what was drugs and what wasn't.  even though my head is killing me.  

and this is where I am at.  my headache is the most normal thing in the world to me.  I have had it for longer than I haven't.  anyway.  falling.  so I call my NS yesterday and they all know me too well.  I didn't want to go to the ER over the weekend and felt that was where this was headed.  so, a STAT CT is ordered.  no brain bleeds.  well, that's dandy.  i'm told I can go home.

for the ct scan, signing forms (consent, blah blah) I forgot my initials.  For a few seconds i want to put TX.  and i start writing 1- (did I not know the date?) but grab my phone and it puts me in my place.  december.  12.  and these are things i notice --

headache, of course.  constant.  but varying in intensity depending on activity

confusion.  short term memory issues.  now.  this.  is new for me.  and is keeping me away from taking anything for pain because it is more scary than the headache i have known since i was 12.  it has shaken me to the core.  the thought of my mind not being mine

not new, but maybe worse.  or just hyper-aware of upper back/shoulder/arm/hand numbness.  tingling.  weakness.  i thought i forgot how to use a fork but I think it was more a moment of weakness in my hand than cognitive.

a dizzy feeling that feels too complicated to explain.  I don't think I have ever been drunk (you have to hide the taste of alcohol from me so completely that it has never appealed to me, but I also think i can't get drunk ... genetic testing is under way to see how i metabolize drugs.  should have included alcohol) .. but this feeling.   it's what i imagine drunk might feel like to other people.  

nausea.  before surgery.  back in september.  my GP admitted me to the hospital for dehydration because i wasn't even holding down water and had lost ten pounds (best diet ever -- these nausea diets) and the thing that ended up working best was SCOPOLAMINE PATCHES.  the things for motion sickness.  people get them for cruises and ******* **** like that.  after seeing my cerebellum, maybe i am on a constant cruise ship.  i'd like to get off.  the patches have a withdrawal so i stopped using them by leaving one on for a while, and I'm scared to take phenergan because it can have a sedating effect (I don't know if it would with me.  i've never taken it alone)  so I'm not really eating.  but trying my best to drink water

it's been two weeks and three days.  i know it's early.  my incision is healing freakishly well.  it's almost upsetting that my body can do that for me but my own hands and feet sometimes don't feel like they belong to me.

so i see my surgeons PA monday.  maybe she will tell me this is normal.  avoid spiral staircases and escalators and wait it out.  or maybe it's a shunt issue.  i just hope this isn't my new normal.