Michael Huggins

Michael Huggins’ Story – A CSF saga
As experienced by his wife, Lisa

 

Baseball Sized Tumor

“Honey, you know, something seems different with my right ear….”  That was the first I’d heard in many, many years about my husband, Michael’s loss of hearing.  For about 5 years, he’d been saying – rather non-chalantly – that he was noticing that his hearing in his right ear was less than the one in the left ear.  We both attributed that to the many, many previous years of rock-n-roll.  Playing in bands, on stage with loud music blaring out of the monitor on his right.  He is my “rock-n-roll, hairdresser husband” after all.  That’s how we met.  He was my hairdresser first…. and he was so cool, with his long hair and the fact that he played lead guitar and was lead singer of a band made him even cooler.  When we started dating – Wow, I thought I’d hit the coolness jackpot!  But that’s another story that goes back to 1990….
 
So, fast forward to two days before Christmas, 2006.  Michael wakes up and notices a marked difference in his hearing in his right ear.  So much so, that it startles him, and makes him say that he will go to the doctor to get it checked out after the holidays.  Note that Michael is just like every other male in the population, that doesn’t voluntarily go to the doctor unless he is scared.  So needless to say, we took it seriously.  So in mid-January, he went to his general doctor to check it out.  All looked OK, but there was definitely about an 80% hearing loss in that ear.  His doctor referred him to an ENT, to be “safe.”  So, a week later, off to the ENT.  Definitely something going on….mechanically things looked fine, but his hearing was asymmetrical and come to find out, that is not normal.  At least not that drastically.  The ENT told him that there was a good chance of what was called an “Acoustic Neuroma”.  Although quite rare, it seemed like a textbook case, he said.  But to be sure, he needed an MRI.  So, a week later, he had his first MRI.  With Contrast, please.
 
Upon leaving the MRI center, Michael called me.  What a horrible experience – even though it was an “Open MRI”.  See, my husband has ADD.  So if you’ve ever experienced a person with ADD trying to sit through Mass, or a dinner, or a school recital, or you name it – you can imagine what he went through trying to be still inside that clanging chamber for an hour!  But it was over and that was that.  He did it.  We’d probably hear from them in three days, maybe on Monday.  So you can imagine my horror to have him call me back, not 45 minutes later, to tell me that he’d heard from the doctor and we needed to come back to his office ASAP – before 6pm that evening.  No explanation, no diagnosis over the phone.  Needless to say, we were petrified.  Michael thought they had found a tumor so massive that he would die tomorrow.  Not quite, as it turned out…but a tumor nonetheless.
 
So over the next few months, we learned about Acoustic Neuromas, or Schwannomas, as they are technically called.  We learned that the best surgeons were the specialized combination of a neuro-otologyst and a neurosurgeon that had successfully done a number of these surgeries as a team.  (Successfully being the key word.)  Living in Atlanta, we were fortunate that there were a few of these teams here in town, which had good experience.  In late February, we had selected a fine team at a very respectable Atlanta teaching hospital and set the date for April 26, 2007.
 
So, what do you do, knowing that your husband will be going through a potential 10-12 hour brain surgery in just a few months?  You have a 10-year old son, a professional career with a successful advertising agency, and your husband is self-employed.  You have a mortgage in the suburbs and a dog and fat cat named Sorbie.  How do you deal with this monstrosity that’s happening to your family?  Do you just go on?  Do you go to Mass and light a candle?  Do you prepare yourself and your son that Daddy may not be the same after surgery?  Yes, yes and so difficultly, yes.  Fortunately, my DNA helped me to move on and prepare for the best outcome.  “It will all be fine.”  “These surgeons are the best in Atlanta…the country even; they’ve done this numerous times before.”  “Don’t think of the worst and hex it.”  He will be FINE….
 
The doctor came out of surgery after 5.5 hours to tell me that everything was going great.  The tumor slipped out nicely, was not very vascular – nor interconnected with the nerves, and Michael was doing very well.  The neurosurgeon was finishing up, and it should only be about 1.5 more hours until he was done and well into recovery.  “FANTASTIC! I thought.”  …The only issue was that they were not able to put in the typical lumbar drain.  Michael had a lot of arthritis in his back, and it would be too painful for him if they proceeded with forcing it.  But there was only a slight chance of him even needing it….CSF leaks are even more rare than the tumor itself, and if a leak presented itself, we would deal with it then.  “WHEW!” I thought!   The surgery went better than planned and the surgeon was happy.  This whole thing will be over before we know it!!
 
A week later, Michael was ready to leave the hospital.  Everything had gone as planned.  He had weakness in his face, his right eye was wide open, but he could manage to get it closed.  His speech was slurry…the kind you have after 3 drinks.  But we were hopeful that all would heal in time.  He had taken a shower and had walking papers in hand.  That’s when I noticed it….yes, ME.  A few drops of clear fluid around his incision behind his right ear.  Was it water from the shower?  But we were so careful and had bandaged it up so well to keep it dry.  How had that happened?…. Hey honey, we should probably show the nurse….just to be “safe.”
 
So that was the first chapter, and what was really just the beginning of our saga.  I say “our” because we thought it would be better to tell Michael’s story from my perspective.  I’m his wife, Lisa, and I can tell you it was the longest, hardest, saddest, most intense and grounding three months of my life.
 
Chapter 2 – May 3, 2007
This is where it gets complicated.  It’s hard to know how much to write here.  There was so much that happened and I’ll try to condense as much as possible.  But every part of the story is important because the sum of it is what makes Michael’s situation so unique.  The CSF leak that began when we were leaving the hospital got worse as the day went on.  To make matters worse, the doctors were so busy that we didn’t see one until probably about 6 hours later.  I have never seen my husband so mad about anything in my life.  So when the doctor came in and told us they wanted to put in an EVD drain in the top of his head to help the CSF drain and stabilize, he laid into him!  I felt pulled in both directions and stuck between the two – I knew Michael wanted to go home and I wanted to go home and have it all be over.  But I also knew that the doctor was right and we had more days in the hospital ahead of us while the leak resolved itself.  So Michael finally agreed to let him “put in a few more stitches” and we would talk to his surgeon more about the drain.  The thought was that a couple of stitches would tighten up the incision and help the leak stop.  So I went outside the room to make a phone call because I didn’t particularly want to watch him putting in stitches behind his ear. (ouch!) While I was out in the family waiting room the strangest things started to happen…  It was truly like a TV show…I started to hear all this commotion and people running down the hallways.  It got my attention and I realized it was coming from just down the hall… towards Michael’s room.  I asked my sister-in-law to hold on the phone so I could just walk down to be sure.  Oh My GOD!  There were 25 people in Michael’s room all of the sudden!  They were saying things like “CODE 9” and very young nurses and doctors were standing around with concerned looks on their faces.  One was shoving this huge tube down Michael’s throat… I’ll never forget one in particular who came to me and led me away, telling me “It’s OK honey, they’re working on him.”  I went into the strangest fog…I kept asking “What happened?  He was just supposed to get a few stitches?” “What happened?”  Nobody knew, but they were working on him…Then I turned around and realized the hospital Chaplin was holding my hand.  “Excuse me, but what the heck are YOU doing here??…and how did you get here so FAST??”  What happened?” “This can’t be happening, this can’t be…how am I going to tell my son that his daddy died when he thought he was coming home today??”
 
A very wonderful ICU doctor came to me and talked to me and calmed me down.  Michael’s heart never stopped beating but he did stop breathing for a few seconds.  He didn’t know why and they were going to do every test there was to find out why he “crashed” so quickly.  Oddly, I was still holding my cell phone open and my sister-in-law was still on the phone hearing all of this.  She was on another phone and her computer contacting all 5 of his siblings and getting her prayer group going!
 
A few hours later they took Michael off the ventilator.  They believe that Michael had an allergic reaction to the Lidocaine that the doctor put into his neck to numb the area for the sutures.  After all this time, I’ve come to believe that he put the needle into his artery and the lidocaine numbed his respiratory system to the point that he couldn’t breathe.  But – after the drama of the night, Michael was in ICU, breathing on his own again and had an EVD tube drilled into the top of his head to help the overflow of CSF fluid drain out. AND he had a few more stitches behind his ear.  He was connected to this huge apparatus, because it all needed to be level, his motion very restricted.  CSF fluid is like the blood of your brain.  And interestingly, it’s the only substance in the world that defies gravity – it flows up or down or sideways without vessels.  Amazing all the stuff you learn from ICU nurses!
 
So what usually takes about 2-3 days to rectify, it took 8 days for Michael’s to stop and allow them to remove the drain.  It is now May 11th and we are finally going home!!
 
Chapter 3 – May 18, 2007
Today we had the follow up appointments with both surgeons and they removed the stitches behind Michael’s ear.  Funny, but his incision area is puffy and looks like a sardine lying behind his ear!  So all looks good.  Over the next week, Michael doesn’t do or say much.  He spends most of his recovery time sleeping.  A few headaches.  Slurred speech.  My mom thinks he should be up moving around more, but come on…he just had brain surgery.  I’m sure this is all part of the recovery process.
 
My parents finally went back to Florida on May 21st.  They have been a Godsend, here
almost a month staying with my son so his last month of school wouldn’t be disrupted.  We felt it best to keep him on his normal routine, and hopefully he wouldn’t be too affected or worried.  You know how 10 year-olds are.  But nonetheless, it was a tough time for all of us.
 
That night, at about 2:00am – Michael awoke with a terrible headache and chills.  It kept getting worse.  He started to throw up.  More chills and the headache is severe.  But no fever.  I called his ICU doctor and he said it would be best to bring him in and have them check it out…to be “safe.”  So, 4:30am and we’re on the road, back to the hospital.  This time, my son is with us because my parents went home yesterday morning.  Michael’s pain is getting worse and worse.  By the time we got to the hospital, he had a fever.  When they asked him all those “brain surgery” questions, like “Do you know where you are?” he answered, “Yes. At my mom’s house.”  Michael’s mom passed away 15 years ago…I’m terrified.  Again.
 
Michael had a terrible infection which they assumed was meningitis.  Fortunately, it turned out to be a strep infection, but it consumed his body.  Also, he had pneumocephalus, or air on the brain.  Michael had another CSF leak, this time internally through his Eustachian tube.  So later that day, his two surgeons performed another surgery, going in through his original incision again, this time removing his ear drum and stitching up the Eustachian tube.   He came out of it with the EVD drain back in his head, because we wanted to be “safe” this time regarding the CSF, which continued to leak.
 
The following week, and Memorial Day weekend were tough for Michael.  He was in so much pain.  When the air on his brain finally cleared up after about 4 days, his pain became more manageable.  His blood pressure was through the roof, and the infection was running its course through his body.  The CSF wasn’t reducing, so over the course of more than a week, they must have put in 15 new stitches to get it to stop.  But it didn’t.
 
On May 31st, his surgeon started to discuss with me the possibility of a shunt.  In his career,
 he had never seen anyone bout with CSF leaks as much or as long as Michael had.  It was not yet getting to the point of concern about lasting effects or infection through the drainage site, but we were getting to the point of having a Plan B.  Basically they would put in a shunt from his brain, down through his chest, and into his belly to let any excess CSF fluid drain and be absorbed by his body there.  But it’s not a fail-safe answer… shunts can get infected, need replacing, etc.  So do you trade one problem for a potential other?  Time will tell.
 
The next ten days were spent watching and waiting.  Watching his CSF levels, trying to raise the drain to encourage his body to start absorbing.  Starting over because the leak starts again.  By this time, I’m thinking a shunt would be a good solution.  It would pretty much guarantee that he would be released in 3 days.  At this point, we are both just ready to go home!  It’s been almost 3 weeks since he was readmitted.  I feel like I’m losing my mind and am concerned about Michael and depression.  But his surgeon was still encouraged that it would stop on his own.  Keep the faith….Finally – on June 5th, something started to
happen.  The CSF stopped draining – a sign that his body was starting to absorb the fluid!  Four days later, June 9th – and two days before Michael’s 50th birthday – he came home!!!!
Over the next week, Michael slowly started to come back to life.  Interestingly, after all this time in the hospital, much of the weakness in his face and speech issues improved, although he still had a long way to go.  He lost about 40 pounds, so he was very weak, but he was home!  WE DID IT!!
 
 
Chapter 4 – June 17, 2007
About a week later, Michael started having pain in his right leg.  A few days later, we noticed that his calf was extremely swollen and seemed bruised.  Then it hit me like a ton of bricks – a blood clot!  I hadn’t even considered it – but his lack of activity over the past 2 months, coupled with the fact that brain surgery patients do not get blood thinners during or after surgery – amounted to a very large DVT (deep vein thrombosis) forming in his right leg.  Driving to the emergency room for the third time in as many months, I realized that this could be the most dangerous situation we had been in yet.
 
To make an even longer story short, Michael had to endure another week (plus a day a month later) in the hospital for the clot.  Once released, he had to give himself shots in the belly two times a day for 10 days, and then be on a Coumadin regimen for 6 months.  Being a self-employed hairdresser – sharp scissors and the chance that if you cut yourself you could bleed out – this was in itself a very dangerous situation.  Not to mention the fact that the clot takes time to dissolve, and you must be very vigilant with the med levels to keep it from dislodging…but we won’t go there.  So, Michael’s business suffered, but he hung in there and managed to get through it feeling thankful and blessed.
 
What an amazing guy.  I am blessed that he is my husband and my son’s father.
 
 
 
Chapter 5 – A year later
Now, more than a year since this last hospitalization, all is wonderful.  Michael still has some lingering issues – mainly drippiness from his nose when he overexerts himself.  “Is it CSF?” is always my immediate concern.  Almost to the point of panic.  He, on the other hand, is taking it in stride.  I suppose my reaction is a throwback to the feelings I had in the hospital all those months, and of course, not wanting to go back.  It has been a good year, but hard for me, since I really do not think I completely dealt with what happened that night when I thought I had lost him.  This story has been therapy for me.  I’ve cried many tears as I have relived those days.  But Michael and my son have moved on, and now I will too.
 
We are so lucky to have had such wonderful doctors and nurses along the way.  And an amazing support system of family and friends – and people we didn’t even know – who reached out to us with a kind word, prayer, hug, meal, shuttle and lawn mowing services.  We are so grateful to them all.  It is true that in life the only thing that matters is your family, your friends and your health.  We are blessed to have it all.
 
And my rock-n-roll hairdresser husband is now playing the guitar better than ever.  And he has inspired his son to play too. 

Life is good.