Thursday, February 25, 2016

Bad news mixed with a little humor

So, I previously told you that I have a brain disease called idiopathic intracranial hypertension (aka pseudotumor cerebri).  I underwent brain surgery to have a ventricular-peritoneal shunt (VP shunt) placed in October of 2009.  This allows excess spinal fluid to be drained directly off of my brain down into my abdomen via plastic tubing running from my brain to my pelvis.  This was an extremely difficult surgery to go through.  I had to shave my head, had 20 staples in the top of my head and behind my right ear, and incisions in my chest and abdomen.  I also developed an infection and was "out of it" for days.  I woke up every few minutes and asked if it was day or night, and I swore I heard my brother, Joseph, talking in the hallway to my surgeon.......except Joseph was at his home, on the army base in Ft. Campbell, Kentucky.  This was one of the hardest surgeries I have ever gone through, and the recovery was long and rough, triggering a relapse after sixty days of sobriety.

Fast-forward to October of 2014.  I had completed a 100-day residential treatment program for opioid addiction.  It was during my stay in rehab that I realized something was wrong with my shunt.  They allowed my husband to pick me up to go have my shunt adjusted (another story for another day), but the adjustments didn't help.  I saw my surgeon again when I graduated the program, had a spinal tap to find out my pressures were still really high, and then proceeded to have surgery to replace the shunt in December of 2014 (another story for another day).  Things with my recovery only went downhill during that time.  

Fast-forward to present day.  I made it through a major neck surgery just a little over two months ago without coming home with pain meds (another story for another day).  I have started having extreme headaches, visual disturbances, and ringing in my ears over the past month or so.  These are all signs that my intracranial pressure is high, so I saw my Neurosurgeon's Nurse Practitioner a few weeks ago. We love the care I receive from her, and she seems to be truly concerned about me, always inquiring about how my recovery is going (this past time I saw her, she just came straight out with "How are you doing with the drugs?).  She adjusted my shunt like she always does with a little magnetic device that is placed directly on my shunt valve on top of my head then shifted to move the magnetic device inside the shunt.  This was the last setting on my shunt that we could go to, and this setting would allow the greatest amount of spinal fluid to be drained.  At this setting, my spinal pressure should be around 3, while 12 to 14 is considered normal pressure.  3 is extremely low.  This adjustment usually takes my pressure down quite a bit within just a few days.  I waited and waited, expecting relief, yet my symptoms only worsened.  After a few weeks, I called my Neurosurgeon's office again, and they requested I come in and see the surgeon.  They got me in within just a few days (it typically takes months), and Chad and I drove to Columbus yesterday to see Dr. McGregor.  Going to their office is like seeing friends we haven't seen in awhile.  Over the past ten years, we have come to love them.  

I was hoping and praying for a quick fix, and I asked some of my closest friends to pray for the same.  We walked into the exam room and the doctor came in.  He asked me about my symptoms and agreed that it didn't sound like my shunt is working.  He advised that I needed to have x-rays performed that day to make sure my tubing wasn't kinked, and then I would need to come back for an MRI and a lumbar puncture that they would get scheduled for me.  He then proceeded to tell me that, based on what the tests show, I may need to undergo surgery again to replace the valve in my brain and possibly even to place a new shunt in my lumbar area that goes directly into the spinal fluid sac to drain extra fluid off.  Meds are not an option for me any longer as they caused me to develop a fainting disorder (vasovagal syncope) as well as kidney stones.  

I will be honest, when I heard the awful "s word" (surgery) come out of his mouth, I felt like crumbling into a thousand pieces.  Getting through the recovery process from my recent neck surgery without pain medication was one of the hardest things I have ever done; not to mention the horrible allergic reaction that I developed afterward, which is still of unknown origin.  All of that completely terrifies me.  I kept my composure, and Dr. McGregor told me to head on over to the hospital to have my x-rays done, and that he would see me back in a couple of weeks.  We walked over to a new part of the hospital that I had never been to.  I registered with a sweet lady who kept laughing at Chad's corny jokes.  He ate that up.  I went upstairs to the Imaging area, signed in, and sat down.  I am pretty accustomed to having x-rays and MRIs, and I typically dress metal, no zippers, no buttons, no jewelry.  However, I didn't anticipate having any tests completed yesterday, so I wore my typical attire.  

The radiology tech came out and called my name.  I followed her back to the dressing area/waiting room, and she took a look at my clothing.  She informed me that I would need to remove it all and wear a hospital gown.  I immediately thought about the fact that, it being winter and all, I hadn't shaved my legs.  Luckily, when she laid me out a gown on the counter, she placed a pair of pants with it.  Cue huge sigh of relief.  She told me that I could leave my socks on, and I suddenly remembered that I had worn boots with no socks.  Weird, I know, but I hate socks.  They make my toes feel trapped.  This must be an inherited trait as my nine-year old daughter feels the same way.  She left the room and I started removing all of my jewelry.  I had worn a lot of it.  I put the gown on and managed to get two of the three stringy things tied (I hate those things!!).  It felt like it was choking me, and I realized I had mismatched the strings.  Unfortunately, I had tied them too tight, so they were staying that way.  I picked up the different patterned bottoms and held them up.  They looked like they would fit a six-foot tall supermodel weighing in at 90 pounds.  I kept my hopes up and tried to put them on.  They didn't go past my knees.  I started searching through the cabinets for more pants.  I needed those pants.  I found the cabinet with a big stack of the pants, and I pilfered through the pile to find the biggest pair.  They were all the same size as the tiny ones.  Every.  Single.  Pair.  I resorted to plan B and grabbed another gown to wear backward, as a robe.  I put my boots on, you know, since I didn't have socks and couldn't find any footies in the cabinets, and stepped out of the dressing room.  The tech had told me to sit in the waiting room until she was ready for me, but I evidently took a long time in the dressing room, because she was standing at the door patiently waiting.  It must have been the frantic searching for alternate attire that held me up.  I stepped out of the dressing room and followed her down the hall.  I couldn't see myself, but I'm sure I was a sight.  No bra (most of my most embarrassing stories involve this fact), two hospital gowns on, unshaven legs, and ankle boots!  I can't even imagine what I looked like.  At that point, the discouragement I had been feeling disappeared, and I began chuckling at myself.  I'm not sure why things always seem so complicated when I am involved; nonetheless, I appreciate the humor it allows, even with all of the humiliation it brings.

I am not sure what the next few months will hold for me, but I am hoping and praying it does not include surgery.  To be completely transparent here, I do not feel mentally or physically prepared to undergo surgery anytime soon.  Medical procedures are one of the scariest and most stressful things a recovering addict can go through.  If you don't care, keep me in your thoughts and prayers that my shunt will somehow start working on its own again, or that my Doctor can come up with an alternative plan of treatment.  I have complete confidence that God can answer these prayers; yet I also believe that He can and will get me through whatever may come my way. 

Read about how this medical condition initially led me into addiction by clicking here.

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