Always Smiling

I hope everyone had a great Christmas.  Ours was one of the best ever.  I’ve always loved Christmas, but there is something about having kids that makes it so much better and so much more magical.

Speaking of kids…One thing about Chiari is that it doesn’t care what age you are, it can attack you as an infant or get you when you’re older.  But the one thing I’ve noticed is that without exception every child with Chiari that you hear stories about or see pictures of is that they are always smiling no matter how bad they are feeling.  As a matter of fact no matter what disease or deformity that children have they always manage to smile.  They smile like all is right in their world, how wonderful is that!  I think all of us adults could learn a lesson from the children of the world and learn to smile more.

It’s amazing how powerful a smile can be.  I’ve been asked by people how I handle being in varying amounts of pain everyday.  My stock answer has always been, “I’ve come to accept it, it’s just part of my life.” But as I’ve thought about it during the Holiday Season I think my real answer should be “Smiles”.  I have always tried to find a reason to smile everyday, no matter how bad the day is going.  I have plenty of reasons to smile everyday so it easy for me to smile…I’m married to my Dream Girl and I have the two greatest kids in the world.  Knowing that at the end of the day I get to kiss my wife and hold my kids makes it easy to smile.  But I think the most powerful smiles are other people’s smiles.  Whether it’s the smile I get from my kids the second they realize I’m home, or my wife’s beautiful smile that can light up any room, the smile from a friend, or even the random smile from a stranger, other peoples smiles make me smile and instantly make me forget about the pain, even if it’s only for a few seconds.

So as the New Year approaches I think we should all resolve to smile more in 2014.  After all a smile is a gift you can give for free and you just might help someone get through a rough day.

Time Flies

I’m amazed at how time gets away from me; it’s been almost two months since I updated the blog.  I suppose that’s a sign that I’ve been busy, and being busy means I have more energy and have been feeling better lately.

So lets get caught up shall we… Since my last “Rant” my quest has been to determine the cause of the pain in my left leg that has been with me since shortly after the surgery, and to get some relief.  This quest has involved appointments with my neurosurgeon, yet another MRI, and seeing a doctor specializing in Physical Medicine.  I’ll start with my visit to the neurosurgeon and the MRI…Apparently Albany Med doesn’t know that I love to use them as fodder in my posts, because both the visit to my neurosurgeon and the MRI appointment went much too smoothly.  Usually a visit to the neurosurgeon involves waiting forever to get into an exam room then wait some more until he gets to me.  This time I was seen immediately, it was nice but it just felt wrong.  As I said in a previous post he has no idea what the deal is with my leg so he sent me for an MRI of the pelvic area. 

The day comes for me to get the dreaded MRI.  I walk in and was greeted by the “Take A Number” sign.  It’s on 15 and the waiting area is crowded, my first thought was ‘this is gonna take a while’, ok the language was much more colorful than that but I shouldn’t use those words here.  Back to the story…I take a deep breath and as I reach for the number a voice says ‘can I help you?’ I was startled but I manage to tell her what I’m there for, she immediately grabs my chart and says ‘follow me’.  I felt totally confused, this never happens at Albany Med.  I change into the beautiful hospital gowns and they take me to another waiting room.  I figured this is where they’ll get me, they’ll leave me here and I’ll probably be in this room for an hour or so.  No sooner do I sit down to begin the long wait when suddenly they call me in for the MRI.  Maybe they were making up for the trouble their billing department causes.

I survived the MRI without any claustrophobia attacks, thanks to the fact that I went in feet first, there was no head cage, and the Tech was a chatterbox.  The only mishap involved with the MRI appointment was caused by my own stupidity.  I had what appeared to be a Vitamin-E capsule taped to the back of my left leg where the pain is the worst as a marker and I forgot it was there.  When I got back to my office I remembered it was there because it had broken open and left me with a damp leg and stained pants.  The results of the MRI were negative; there are no structural problems or tumors in the pelvic area so the neurosurgeon sent me off to Dr. Tang the Physical Medicine Specialist. 

Dr. Tang is pretty much convinced that the problem is the hamstring and the tendon.  Oh and his office never keeps me waiting, plus he has some great one-liners.  My favorite so far occurred when I was explaining the symptoms and what aggravates the problem, when he turns to me with a bemused look on his face and says ‘you Chiarians are a special group’…maybe that’s only funny to a Chiarian.  Anyway, right now we are trying muscle injections, stretches, and strength training.  Guess which one I’m going to talk about…take a minute and read the previous sentence again, go ahead I’ll wait…did you guess correctly??? Yep, it’s the muscle injection (not cortisone).  I’ve had two so far and they seem to be helping.  During the first shot I watched as he loaded the syringe with a regular looking needle.  I thought ‘hey it won’t be that bad’…then he removed the regular needle and replaced it with one that looked to be about 6 inches long.  I immediately buried my face in the pillow and prepared for a painful experience.  Even though it was a long and very scary looking needle, there was very little pain.  During the exam for the second injection he knew I was watching him so he paused in between needles and with the long needle in his hand and an evil look on his face he hit me with another one-liner that cracked me up…’special needle just for you’. I guess it doesn’t sound that funny in print, but imagine it being said with a thick Chinese accent…umm maybe you had to be there.  The second shot was not as pleasant as the first one.  He had me bend my leg so that the muscle and the tendon are moved upward and the needle can go in further…one word OUCH!

That’s it for today.  Now that it’s getting wintery around here maybe I’ll be able to post more often.  If I don’t post before then…Happy Thanksgiving!

Warning - Rant Ahead

I should move to Hollywood and become an actor, because I know that I would end up winning an Oscar or an Emmy.  How do I know this? It’s simple…thanks to Chiari I have become great at deceiving people, or just flat out lying.  Now don’t go condemning me to hell just yet or think that I’m a horrible person, let me explain.  There is one question that I have come to dread, it is the most benign query that someone could make…”How are you?”  I know you don’t want the real answer to that question so I will smile, look you straight in the eye and lie to you, my answer will range from good to great.  Come on, lets be realistic about that question, you don’t want to hear that my head is killing me, that I still get numbness and tingling in my arm, that the tinnitus is driving me crazy, that I still get dizzy spells, that I still have trouble finding the right word, that I still can’t seem to regulate my voice.  I had surgery so I’m supposed to be better, and you were just asking a question that we all ask without thinking, so I’m not going to tell you the truth.  Besides, even with all of the issues I still have I feel so much better than I did pre-surgery that I have days when I really do “feel good”. 

Another reason to lie when people ask me how I’m doing is that it saves me from biting my tounge and helps to keep my temper in check when I get this wonderful response… “well it could be worse”.  Yeah, no shit it could be worse.  Don’t you think I know that?  I know that I could have some other terrible disease or be dying or be totally disabled.  I know that, but thanks for totally dismissing me and making me feel like an ass for telling the truth about how I feel.  I’d rather have you tell me how you really feel and just tell me to shut up. So as you can see, lying just makes day-to-day interaction easier.  If I could find a way for other people to live just one week - hell just one day - with Chiari, then maybe they would be more understanding and not make me want to punch them when they say “well it could be worse”.  This is the problem with Chiari.  People expect you to be 100% because you had surgery and you “don’t look sick”.  Unfortunately decompression surgery isn’t a cure; it’s performed in the hope of alleviating some of the symptoms.  Some of these symptoms might go away with time others may not and new ones might emerge, everyday is a surprise when you have Chiari.

I have perfected smiling through the pain or putting on my “game face” as Michelle over at Constricted Cranium calls it.  I don’t listen to my body; it’s more like I completely ignore it.  On days I feel like crap and should be lying down in a dark room I ignore the pain and push on doing things because it is expected of me.  Not only by others but I also expect to be able to do everything I used to do, so I will push myself far past what my body is telling me I should do.  Is it smart to ignore my body on the bad days, no it’s not and I often suffer the consequences for it but I don’t want people looking at me or treating me like the sick guy, and I don’t want to be perceived as weak.  It may sound dumb but sometimes what gets me through the rough periods and helps me keep my game face on is a quote from the penguins on Madagascar “smile and wave boys, smile and wave”.

I’m not having a pity party and I’m not trying to get sympathy with this rant.  It’s just sometimes I need to vent and this blog is the only way to vent without hearing “well it could be worse”.  So do me a favor when you see me out and about, don’t ask me how I am, instead just say “what’s up?”

Been A While

Wow it sure has been a long time since my last post! What can I say it’s been a very busy summer. Its been so long since my last post that my brother-in-law Harry finally sent me a Facebook message informing me that I needed to post something because he is sick and tired of people asking him how I’m doing. A brief note about my brother-in-law Harry; not only is he a very handsome man, he’s also a talented comedian and he has the ability to install a perfectly working storm door. Oh and he’s also an engineer, but I try not to hold that against him. I would give you a link to his website highlighting his comedic stylings but he’s too busy playing video games until all hours of the morning to create and maintain one.

Let’s move on to what really matters here…me. Like I said it’s been a very busy summer filled with work, camping trips, Little League, and lawn mowing. Work and lawn mowing may be my least favorite things from this summer but I thank God everyday that I get to do them. In my last real post I talked about how my patch is leaking and what could be done to fix it. I’m happy to inform you all that the leak seems to have resolved itself or at least slowed down to a trickle. I get occasional swelling but nothing like before. It’s been seven months since I had my surgery and I’m finally feeling better. Sure I have pain everyday, but it’s nothing compared to the pre-surgical pain and it has been a joy not having my head explode every time I bend over or sneeze. The biggest culprit now is yawning. Holy crap it’s amazing how much pain a yawn can cause. A good yawn causes my head to feel like its going to explode then immediately implode, it also causes a brief shot of dizziness and sends pain shooting down my back and into my legs. Luckily even the intense pain caused by yawning goes away quickly. So overall I can’t complain about how my remodeled brain and skull are feeling these days. My answer to the question “would you go through the surgery again” is a resounding YES!

The most bizarre thing that has occurred since my surgery is pain in my legs, which I’ve mentioned before. It’s located just below my butt cheeks and makes sitting and standing painful. I mention this because it’s the one thing that has kept me from being released from the care of my neurosurgeon. I had an appointment with him last week and for the first time ever I wasn’t kept waiting, how refreshing. Anyway, he can’t determine what the problem is so now I’m heading for another MRI, this time of my pelvic area. Did I ever mention how much I hate that damn MRI machine? Oh I did didn't I. This time there will be no head cage so I should be able to get through it without freaking out. If I’m real lucky they will stick me in feet first and my head will never enter the tube.

That’s it for now. Remember, September is Chiari Awareness Month so spread the word.

More To Come

I just realized it's been about a month since my last post.  The reason for my lack of posts is due to the fact that June and July are insane here at work.  Everything we do here at ACM is due to our National Association by July 31st.  Once the dust settles and we return from vacation I will be posting more often.

Oh, and just in case you're wondering...I've been feeling pretty good lately.  The problem with feeling good is that it increases the odds that I'll over do it and then feel "not so good".  More on my Chiari adventures to come.

The Results Are In!

The results are in, but before I reveal them you have to put up with a little story…Did you really think I would just post the results?

I got a call on Tuesday from my neurosurgeon’s secretary that the results of my MRI’s were in and the doctor wanted to see me to discuss them on Thursday.  My brain immediately said “ut-oh this can’t be good” I told it to shut-up, but it kept taunting me with “what if’s”.  My appointment was at 3:00pm and my wife Joyce kindly reset her work schedule so she could go with me, she’s awesome.  Having experienced long waits every time I go to Albany Med I made sure we got there early in the hopes of being called earlier.  It worked, they called my name just before 3:00pm, this was the shortest wait I had ever experienced in the neurology waiting room.  The nurse showed us to the exam room, checked my vitals, forced me to fill out the same freakin’ forms I fill out every time I go there, then as she left she said that the doctor would be right in.  Sweet! We were both feeling good about the pace that the appointment was progressing at.  The good feelings didn’t last…10 minutes became 20, then 30, then 40.  At the 40 minute mark I was sick of waiting so I stuck my head out the door to see if anyone was around that I could complain to, no luck the hallway was empty.  The one thing that kept me from losing my mind was being there with Joyce.  Her presence has the ability to keep me relaxed without her having to say a word.  So how did I repay her for spending her afternoon at the hospital with me and keeping me from going mental?  I ended up subjecting her to my comedic stylings, and best of all the awesome video of “Let’s Have a Party Albany”.  This was a cheesy ode to Albany, NY for its 300^th birthday back in 1986; you couldn’t turn on a radio back then without hearing it.  For your viewing pleasure Let's Have a Party Albany

We were heading into the 60 minute mark so once again I got up and stuck my head out the door.  This time there was a woman standing there talking to someone; that someone turned out to be my neurosurgeon, I quickly retreated back into the exam room.  As I retreated we made eye contact; he shot me a quizzical look that said “what do you think you’re doing, now get back in there” I felt like a kid that got busted by dad trying to sneak out after curfew.  Oh, it took him another 5 minutes to knock on the door and come in.  He actually apologized for keeping us waiting; that was a first, I’ve never had a doctor apologize for that.

On to the results:

We learned a new word yesterday, that word is Pseudomeningocele.  Of course when the doctor first said it all either of us heard was pseudoblah-blah-blah.  So what is pseudomeningocele? It’s an abnormal collection of cerebrospinal fluid (CSF) in the soft tissue in the back of my head.  In other words my patch is leaking.  My first thought was “oh crap here we go again, he’s going to tell me I need surgery to fix it”...WRONG!!!  Because my symptoms have been slowly improving surgery is off the table for now.  If my symptoms come back or I experience new and/or strange symptoms then there are two options available.  The first thing we can try is to go to a specialist that will use CT to direct a needle filled with tissue glue to try and seal the patch and then aspirate the fluid on the way out.  The second option is of course my least favorite; the neurosurgeon would do another more invasive surgery and I would end up with a shunt to drain the CSF. 

So there you have it, you learned a new word and you got treated to a blast from the 1980’s.  Best of all…I am feeling better and don’t need surgery!!!

From My Much, Much, Much Better Half

Hi there everyone, Joyce here – Dave’s better half (well at least I tell myself that anyways).  Dave has been asking me to write a post on his blog for a while, which I admit, I’ve been putting off…but here you go.  First, I will say I’m not as witty or comedic as Dave, so I apologize if this doesn’t make you smile like his posts do.

Where to start, hmm…Dave asked me to write how the entire experience affected me from before the doctors got involved to diagnosis to surgery through today…so from the beginning it is…Since I’ve known Dave he has always complained about headaches, constant ones, all the time – he’d pop sinus medicine like it was candy his head would hurt so often.  I recall often telling him to go to the doctor, that something wasn’t correct, that it didn’t make sense.  After 9 or 10 years he probably got sick of me complaining and obliged.  This was when he saw a neurologist that recommended a sleep test, which resulted in nothing more than “you have headaches sir – deal with it”.  After that I kind of gave up nagging him, as I didn’t see the point, the doctors weren’t going to help him.  Well I only gave up until the end of summer 2012…Dave seemed to have worse headaches, to the point that something really wasn’t correct, things were changing and I was noticing it more often….time to start nagging again…to no luck – the stubborn man I married wasn’t hearing “go to the doctor, something isn’t right”, he just kept living with the pain.  The pain was more than pain though – he was starting to forget things; forming simple sentences was sometimes not possible, picking a piece of paper up off the ground would make the pain worse.  Little things were changing and not for the better. Finally in mid-October he said, “do you know I have had a headache every day since the kids went back to school (Sept 7^th)?” Now most of you don’t know me all that well, some of you do and only a very few of you that are reading this know me enough to know that I don’t sugar coat anything – you’re going to get my opinion and I frankly don’t care if you don’t like.  “DAVE, GO TO THE DOCTOR – SERIOUSLY SOMETHING ISN’T RIGHT – YOU NEED TO GET IT FIXED.” Nuff said?? I thought so, and apparently so did he – because he made the appointment…and, well, you know what’s been happening since then – from his eyes.

Fast forward – the day before Thanksgiving.  I’m happily baking some pies and preparing for my sister and brother-in-law and children to join us at my house on Thanksgiving Day…..until Dave calls.  The doctor said what??? Brian surgery??? Wait a minute, slow down – did I hear him right???  Holy *****!!! 

So at this point you know what Dave is feeling. As for me, the first thing was to figure out what to say to the kids.  I didn’t want them to worry, so the agreement was not to let them know until after the holidays – at least this way I could be the worrier and everyone else could just enjoy Thanksgiving and Christmas. Worrying is probably an understatement but it’s the best I can come up with right now.  I’d tell myself, not to go to the ‘what if’s’, but inevitably the ride home from work I’d go there….every situation I could think of probably went through my head about 1000 times, each day, every day.  It didn’t make it easier, but for me, it let me get the worry out before picking up the kids so that I could focus on them.  Hey, I know it’s not ideal, but it was what it was.

Preparing for the surgery was filled with a great deal of planning and execution.  For those that don’t know me, I’m a process person – I believe there is a process for everything and if the process if followed everything will work out.  So I planned the process….from where the kids would be to time off from work, it was all planned, nothing left open ended – everything planned out. It was set.  This kind of kept my mind off things – kind of – at least it gave me a focus other than those stupid words…brain surgery.

All along the surgeon is telling Dave 3 – 5 days you’ll be in the hospital and you know from his posts, he was planning to breeze right through this – be teasing the nurse staff and having a ‘blast’.  Who was I to not believe the same thing?  The day of the surgery came and it was an eerie kind of quiet at the house.  The kids were with our very good friends (thank heavens for friends), the dog was at my brother’s, everything was quiet – even Dave and I…off to the hospital we go. Register, prep, a kiss good-bye and he was on his way. Waiting, waiting, waiting, …stupid waiting.  I don’t like waiting.  Once the surgeon came out and told me everything went well, I felt a sigh of relief – yes, they had to do more than we wanted them to, but overall it went well and I could go see him.

To say I felt helpless is probably an understatement.  I walked into a very dark room to see my husband lying there, not in a good state.  He barely opened his eyes to say hello and that was it for that night. Watching your spouse in a hospital bed in excruciating pain day in and day out for 9 days is not easy, but that is what you do as a spouse. The first few days were the worst – he couldn’t open his eyes, it hurt too much; he couldn’t talk, because he didn’t want to; he couldn’t eat because the medicine was making him sick.  This is supposed to be better??? I’m not sure I agreed at that point.  Each day, I’d say to the resident, nurse or surgeon (if I was lucky enough to get him in the room), “is this normal” the answer was “yes” and was always followed up with “this is not an easy surgery to go through or come out of”. Ugh. So again, helpless is the only word I can use to describe the feeling.

The saving grace….I knew everything else in our life was taken care of.  The kids were safe and having fun, the house was fine, work would survive – I could focus on Dave and that is what he needed – whether he wanted it or not.

Coming home from the hospital was a great feeling – I believed, he was getting better – things were going to be better.  Of course that was until they were worse…I don’t know how to describe the feeling, but knowing you can’t help the person you share your life with is not fun – it’s heart breaking. No matter what you do, you know it isn’t enough, because you know it’s not helping. There were many nights filled with lots of worry and hoping for a better day the next day.  Most days were not better, but some days were and those little signs of something better, gave me the strength to keeping moving forward and believing that things will be better.

The day we woke up and I saw his surgery area and it looked like someone put a golf ball under his skin, I knew something wasn’t right still.  Since then it’s been nice to have a few days where Dave has claimed no pain, a small victory in this marathon battle, but I know the battle isn’t over. So here we are weeks later waiting on those darn MRI results from Dave’s last post – yes, it’s been a week and no call from the doctor – lovely, fantastic…ugh.

If you ask what all of this has taught me, I would say that it is simple – you can’t take anything for granted – not a single thing. Enjoy everything always and don’t let the small stuff bother you – at least that is what I try to do now.  It doesn’t always work out, but I’m certainly more aware now than I ever was before of what is important. I also realize now more than ever that we have an amazing network of family and friends and I can’t thank them enough for everything they’ve done.  You know who you are, I don’t have to mention you by name – just know I appreciate you more than I can explain and I will never take you for granted.

Warrior?

“Unleashing his hell, you will not even hear the bell.  Maybe you're strong, but you don't stand a chance.”  I figured I’d start this post with some lyrics from a song called “A Warriors Call” by Volbeat.  They are one of my favorite bands and they will show up again as this post develops.

Chiarians often refer to them selves as ‘warriors’ and/or ‘fighters’.  When I was first diagnosed I had a hard time accepting the fact that people referred to themselves in those terms.  I figured I would breeze through the surgery and cruise through recovery and there would be no need to be a warrior or a fighter.  Well, as usual Chiari has taught me that it won’t just waive the white flag and go away, that this really is a fight, and that Chiari will fight dirty.  Looks like I’m a ‘warrior’!

The fight continues…

My last post detailed the problems I was having with my legs, the headaches, the fact that the back of my head was a swollen mess and that I was finally going to PT.  I started PT and at first it didn’t seem to be working.  I would leave there feeling pretty good, but after a few minutes in the car my legs would start hurting.  Suddenly last week my legs began to feel better and so did my head.  I had 5 glorious days of no leg pain and very little head pain.  I felt that I had finally won a round…Then came Memorial Day, I was doing my PT exercises at home when my left leg began to scream at me, Chiari was making a comeback…Damn it so much!!

Now this wasn’t a complete comeback for that little bugger.  My legs bother me but the pain is nowhere near as bad as it was a few weeks ago.  Unfortunately my head has been killing me the last few days.  It has been a series of classic Chiari headaches…I’ll feel fine, but then I’ll yawn or move the wrong way and get hit with a blinding headache.  Luckily they don’t last long, they are a short duration but wow do they hurt.

Big Baby…

That’s me, a 6’4” baby.  Thursday I had to go to Albany Med for a MRI of my head, neck and spine…No big deal right?  It’s not a big deal unless you are claustrophobic like I seem to be.   At first I thought I was going to be OK, because this machine had headphones.  The technician asked me what kind of music I wanted, when I responded with “the hardest stuff you have” she gave me that look that said “aren’t you a bit old for that kind of music”.  She informed me that they had Pandora Radio so I told her to type in Volbeat for me, after a brief pause she finally asked me how to spell it.  She gave up trying to remember the spelling and had me spell it once she was back in the control room – or whatever they call the room with all the computers.  I did pretty good for a few minutes then my brain got the best of me and the panic set in.  They had to pull me out so I could sit up and catch my breath.  Back in I went…I would get through a few scans and have to repeat the “get me outta here” drill.  After an hour of torture they were ready to scan my neck and spine which meant they could take the cage thing off my head.  What a difference that made.  I went back into the tube without that damn thing around my head and promptly fell asleep…they finally woke me up to see if I was OK and to tell me to stop moving my legs.  I informed them that I had fallen asleep and my legs do their own thing while I snooze, they made me stay awake since there was only about 10 minutes left.  Hearing that 10 minutes was all that was left made me very happy.  Then they pulled me out and informed me that the doctor wanted 2 more scans with a pulse-ox reading that would take another 15 or so minutes.  I thought to myself “no big deal”…then I saw them reach for the cage thing…oh hell no!!!!  I tried bargaining my way out of having to use the cage but that didn’t work.  Back in I went, the machine made some noise…then silence…no music no machine noises no nothing…PANIC!  Finally they pulled me out; apparently they weren’t getting a reading from the pulse-ox sensor.  Back in I go…same thing happens only with longer silence and more PANIC.  The third time was a charm, the sensor worked and the scan met the doctor’s expectations.  After 2 and half hours I was outta there...I was so excited to be done that I actually did the happy dance on my way to the changing room.  It had taken so long that there was a shift change while I was in that damn tube.  I told the new technician that it was nice to meet him and that I sincerely hoped that I never see him again.  I really, really, really hope I never need another MRI.

As soon as I get the MRI results I’ll post them. Aww crap, I just yawned…I hate you Chiari!!!!!

Recovery???

I try to be optimistic, I really do, but the past few weeks have really sucked, so it’s time for me to vent.  Chiari is doing its best to remind me that it will never let go of me, and that I will always be a Chiarian.  There have been times I felt worse than at any point prior to the decompression surgery.  Not only am I getting good old fashioned Chiari headaches, the numbness in my left arm is back, along with occasional dizzy spells.  Those are all things I can handle, what is driving me mad is the new pain in my legs that developed about three or four weeks ago and seems to be getting progressively worse.  I can only sit or stand for a few minutes at a time, which is a bummer for a desk jockey.  I spend my work day doing the following “exercise”…sitting, then stranding, then walking around my office in the hopes of getting some relief.  This is repeated about every 15 minutes throughout the day.

The neurosurgeon initially thought it was a hamstring problem because it was only in my left leg and that’s how it was presenting when I saw him for a follow-up appointment.  Then the right leg got in on the act, mostly in my calf.  They now think it’s a pinched nerve, due to a possible leak in my patch.  So now I’m waiting to see a PT on Tuesday.  I hope the PT can help because my commute to work is an exercise in torture.  By the time I get to work I can barely get out of the car and up the stairs to my office.

There is however one thing that gives me relief…lying down.  So here I am almost 3 months post-op and I still pray that it’s finally 8:00 so I can lie down.  After about 10 minutes of lying down the pain goes away, at least until I sit back up…Ugh!

Now that I have vented, you may be thinking that I regret having the surgery done.  Not at all, I’m glad I had the surgery done, and I’m proud to be a zipperhead.  Besides family and friends; the other thing that keeps me going is the knowledge that all of this is part of the recovery process.  Recovery from Chiari decompression is a series of steps.  At times it seems like its one step forward and ten steps back so I have to keep reminding myself that total recovery time could be up to a year.  When I first started blogging I knew in my heart of hearts that I would be fully recovered and would have kicked Chiari’s ass by the third month.  I never counted on Chiari having its own boxing gloves and that it loves to punch you around when it feels like it. The fight continues.

I’m done complaining for today.  I’ll let you all know how PT goes.

Lucky Man

I’m a lucky man!  Not only because I’m married to my beautiful dream girl and have two great kids.  Not only because I have a great family and wonderful friends.  Not only because I have a great life, and I look forward to each new day.  I’m a lucky man because I have Chiari Malformation Type 1!  Why would I consider myself lucky to have Chiari?  That’s an easy question to answer…Not only am I part of small exclusive group known as Chiarians, but… I only have Chiari Malformation Type 1.  Many other Chiarians have other problems which add to their pain; such as Syringomyelia or an Arachnoid Cyst.  There are many other things that Chiarians may have along with their Chiari, but I only have Chiari…I’m a lucky man!

Because I only have Chiari; I was eligible to have minimally invasive surgery in order to try and bring about some relief from my symptoms.  As Chiari blogger Michele at http://constrictedcranium.blogspot.com/ points out, we are never cured or fixed, and we will always be Chiarians.  We make the decision to have brain surgery in the hopes of getting some relief, knowing full well that the spoiled brat Chiari could sneak up on us any time it wishes to.

Thanks to that minimally invasive surgery my zipper is more like a button hole.

Here I am the day after my decompression surgery

Hey look, no more hospital gown.  This is the day I got home from the hospital one week post-op.

Below are post-op pictures of Michele from Constricted Cranium.  She also had an Arachnoid Cyst so as she said her zipper is the “deluxe model”.  Even though she has the “deluxe model” I have a feeling from reading her blog and exchanging comments with her that she considers herself lucky to have Chiari too.

Here she is the day after her decompression surgery.

Here she is 10 days post-op.

You can see from these pictures how I find it difficult to call mine a zipper when compared to her deluxe model.   Michele thanks for letting me use your pictures.

  

Please do all of us Chiarians a favor and check out as many other Chiari bloggers as you can.  Not only do we all experience Chiari differently, but all of us that chose decompression surgery experience the surgery and recovery differently.

Also please, please, please check out sites like http://www.chiariassociation.org/ and http://www.conquerchiari.org/index.html.  They have resource pages where you can find out more about Chiari, discover other Chiari bloggers and help us spread the word.  If we all educate others about Chiari then someday we won’t have to read about losing 3 Chiarians in a one week span because of “complications due to Chiari”, like we did last week.

It's been how long?

It’s been so long since the last time I even looked at my blog that I had to go back and read the last post so that I didn’t rehash anything and make readers think my brain got damaged instead of decompressed.

Before I go any further I just wanted to wish commenter Debi good luck with her recovery.  She had her surgery on March 20^th.  I didn’t see her comment until last week so I totally missed wishing her luck before her surgery.  Hopefully when she’s up to it she’ll let me know how she’s doing.

So why has it been so long between posts?  Well it all began on February 28^th, a date I’ll never forget.  I felt great leading up to that day, I had been working from home and feeling like I was on the fast track to recovery.  Then around lunch time I started feeling a bit tired and queasy.  Three bites into dinner and it was all down hill from there.  That’s when I lost the ability to keep anything down, or as my brother-in-law Harry likes to call it…reverse peristalsis.  The total inability to keep things down lasted through March 10^th.  I need to thank my in-laws, my mother and father-in-law not only took care of our children, they ended up taking care of me during this time.  I can’t thank you enough Nonni and Poppi!  You may be wondering why they had to take care of me…well my wife had to go to India for work; that’s not a typo she got to go to India, how freakin’ cool is that.  She was very reluctant to go but since I was feeling good at the time I talked her into going.  I’m glad she went; she really didn’t need to see me melt down.  It was bad enough that she was on the phone with me when I had a bad dizzy spell and crashed to the floor in the kitchen, walked 10 more feet and crashed to the floor in the playroom.  When Joyce got home she was shocked when she got a look at me.  When she left I was close to 200 pounds, when she got home I had lost over 30 pounds.  I looked like a coat hanger with a head attached to it.  I also need to thank my brother-in-laws Joe and Steve-O.  They would stop by on weekends and split wood for me.  I’ll be thanking more people in a future post, if I thank all of you now this post will go on forever.

I was pretty much useless that entire time, but being able to work from home meant I could actually get everything done; it just took far more than an 8 hour day to get it done.  By the time I got done with work I was in no mood or shape to blog or even use a computer. 

The dizzy spells and stomach problems kept up until I weaned myself off of all prescription drugs.  I got off everything on March 18^th, and had two more days of hell.  When I woke up on the 21^st it was like someone flipped a magic switch.  My eyes were focusing better, my stomach was acting normal, and good old Advil was keeping my pain in check.  The 21^st was also a great day because I got to drive again; it was so nice to make that commute to work…how often do you hear about someone enjoying their drive to work?

Speaking of work…work is the final reason I am just getting around to posting this update.  March is a crazy time for us and I was so busy that once again the last thing I wanted to do was turn on a computer when I got home at night.

Things are some what quieter at work now and I feel good enough that I can start blogging again.  Now I just need to stop myself from overdoing things...more on that in a future post.

I know I said that I would post a picture of my zipper, but I have a few things I want to say about it and this post is getting outta control.  So I’ll post it next time.

Oh wait, one more thing…I learned a very important lesson during my first month and a half of recovery.  When you are two weeks post-op and living on a cocktail of pain relievers and muscle relaxers don’t set up your new smart phone without supervision.  I did just that and ended up having no idea what my App Store password was when I tried to download an app.  It took forever to find out how to recover from this mistake because my supposed smart phone doesn’t offer a way to email me my own damn password.  As a matter of fact you can’t recover your password at all; the only thing you can do is reset your password…not smart, not smart at all…oh well!

Home Sweet Home

When I last posted I had been given my discharge papers and achieved Freedom.  After a tour of the hospital and a quick elevator ride I could see the light at the end of the tunnel, there it was…the exit in all its glory.  Never before has the air in Albany smelled better, it was a beautiful sunny day in the mid forties which for February is a rare treat.  Luckily I got out of the building before Joyce got the van from the parking garage so I was able to sit there in the wheelchair and enjoy some sun and somewhat fresh air.  It was so nice to be out of that building, I was there for a week and was about to go stir-crazy.  Don’t worry, I was still under hospital supervision they didn’t just push me outside and leave me, my nurses assistant was there to make sure I didn’t roll down the sidewalk or get in the wrong vehicle.

Before I go any further I should mention that these new headaches are different from the Chiari headaches.  These headaches seem to be more motion and position sensitive, as in each step or wrong turn of the neck can and usually does result in a hot shot of pain that can last from a few seconds to a few hours.  These new headaches are much more intense than any description I can come up with, but I’ll try…They feel like my brain is being constricted while at the same time it is trying to explode out of the top of my skull, out of my ears, and through my eyes.

Anyone that lives in Albany or has to travel through it knows that Albany always vies for the title of the worst kept roads.  It must have more potholes per square mile than any other city in the state.  I’m not just talking about the side streets; I’m taking about New Scotland Avenue, which is the main entry road to get to the two major hospitals.  Albany should be ashamed of it self for presenting hospital visitors with such a poorly maintained road.  I know you are thinking, “Shut up about the roads”, but I had to mention them because those potholes did their best to make my life miserable on the trip home.  Every jolt from those potholes resulted in devastating pain.

We live about an hour from Albany and when we finally got on the Interstate my eyes were becoming sensitive to the bright sunlight…ugh!  Every bump and dip in the road was kind enough to make my head and neck cry out in pain.  Sitting for long periods of time also caused pain so that trip was like a tri-fecta of pain infliction.  That was the worst car ride of my entire life and I pray I never have to experience anything like it again.  I was so happy to see our house as it came into view; the joy was almost overwhelming.  Once I got settled in at the house with the help of my wonderful and patient wife I spent the rest of Friday and Saturday sleeping as much as I could.  I may have been in pain and exhausted from the ride but I was where I wanted to be, home sweet home!

I will reveal my zipper in the next post so be prepared.

Story Time

On we go…It’s finally Saturday and I’m breathing under my own power so they decide it’s time to send me to the M Unit and a room where they won’t be checking me every hour.  I don’t remember leaving the D Unit; I just remember the rude awakening I received when I woke up.  I was greeted by searing burning pain in my eyes from the extremely bright sunlight streaming in from all of the windows.  I was privileged enough to get a corner room, which would have been great if I wasn’t so sensitive to light.  Even with the shades closed I spent the next 2 or 3 days looking like this, and mumbling to myself like Gizmo “Bright Light, Bright Light”:

I also awoke to the realization that I had a roommate.  Normally it wouldn’t be such a bad thing, but he was a pastor of some sort and I’m pretty sure his entire congregation was visiting him.  My nurse finally put them out via the 2 visitor limit rule and told him to go down to the waiting room with them…ahhh the sound of silence.  I remember my visitors coming and going over the weekend but that was about all I remember.  I didn’t have much to say so I was terrible company.  I think it was Monday when my roommate moved out and I had the entire room to myself…the quiet was wonderful.

My original, naïve, never been in the hospital plan was to be out of the hospital within 3 days, after all they said 3-5 days, so I was all set to be released at some point Monday.  Turns out I’m not as tough as I thought, and Chiari and nausea had other plans.  My doctor also reminded me that I just had surgery that is very difficult to recover from.

So Monday turned into Tuesday…more pain, more nausea…Tuesday involved being transported to the CT machine to make sure everything is in it’s place…Tuesday turned into Wednesday…more pain, more nausea, oh no now a fever!  Thursday comes and the nausea has subsided and I got my pain level down to a 5.  I haven’t been at a 5 in forever, it was glorious.  Of course the relief didn’t last long, I over did it and shot back up to a 10…grrrr!  All I had to do was keep my food down and I could get out of there Friday!  Thursday also meant the arrival of another roommate…ugh!  He was about 90 years old and had the grossest cough ever.  Each time he coughed my stomach turned and my head pounded.  I did a lot of praying that I wouldn’t puke each time he coughed, which was about every half hour.  All of his visitors had to talk on their cell phones and were loud in all conversations, I never met any of them but I hated them anyway.  They seemed to quiet down after I told the nurse I was about to go after all of them with my IV pole.  So it’s Thursday night and the pain is brutal, they pump me full of pain med’s and during one of my vital check’s it looks like I’m getting another fever.  This resulted in spending about an hour with cold packs in my armpits and on my head.  Close call, but the fever stayed below 100 so I still had a chance of getting out.  It’s finally Friday, and the pain was way above 10 but I didn’t care I wanted to go home.  After all I can be in pain at home just as well as I can at the hospital.  At long last the nurse came in with my discharge papers…sweet!  I listened to her instructions and bam; got hit with a wave of nausea.  Another close call but I got through it and got my wheelchair ride down to the exit…FREEDOM!!!

The next post will deal with the special hell that was getting home!

I'm Back!

First of all I want to thank everyone for the wonderful comments, thoughts, prayers and help you have all given us during this adventure.  I am feeling stronger everyday.  I’m not pain free but I get a brief respite a few hours each day.  Best of all the constant numbness and tingling in left arm and leg are gone…Take that Chiari!

Wow, where to start?  I guess I’ll start with the fact that I never got the chance to cruise the hallways of the hospital in a wheelchair harassing people…bummer.  As a matter of fact I got reprimanded for going past the double doors of my wing one day during a walk.  Apparently there are a lot of confused people on the neuroscience unit and they don’t want them getting lost.

The big day was finally here, we left the house at 4:00am so we could see my parents before the 5:30am check-in.  Shockingly enough check-in started with having to take a freakin’ number and sit and wait to be called.  We waited then signed our lives away and off we went to pre-op care, where they were nice enough to run some happy juice through my IV then covered me in pre-warmed blankets, I loved those blankets.  Things get blurry after that, I remember rolling through the halls and praying they didn’t break my feet since the stretcher isn’t made for people as tall as I am and my feet were hanging over the edge.  I remember how the OR looked brand new…if it was 1970.  To be fair they are constructing a dedicated OR tower so future patients will get to use the new digs.  They asked me what kind of music I wanted to listen too, so I asked for something fast, hard, and loud.  The last thing I remember is hearing Thunderstruck by AC/DC and then waking up in the ICU and being moved to the PACU, or maybe I woke up in the PACU and then moved to the ICU.  I have no idea where I was Friday into Saturday morning, just that it was on the 5th floor of the D wing and there were at least 3 others in there with me and they kept the room wonderfully dark.  One of my room mates was a teenager I’ll call him “Skippy”.  Skippy needed his ass kicked, all he did was yell at the nurses and his mommy, then mommy would yell at the nurses.  I offered up a “shut-up” as loud as I could but it didn’t work, for all I know the words never came out.  The only thing that I remember clearly was managing to rip out one of my IV’s and being completely covered in blood.  The rest of Friday sucked.  They tried to sit me up using the adjustable bed but the pain was too much to stand so they laid me back down.  Later they tried to sit me up using an assistant at each side…bad move; the pain was brutal and my legs and arms convulsed involuntarily.  That must have been one hell of a site; all 6’4” of me waving about like a jellyfish.  TMI ALERT…I know you are all wondering why they kept torturing me by making me sit up, the simple answer is that my catheter was out and I wanted to prove I could go by myself.  The stakes were high because if I didn’t go they would straight catheter me every time I had a full bladder…yup, I lost that battle.  It taught me one valuable lesson though, and that is that you don’t give a damn about dignity when your bladder is full and you can’t complete the mission on your own.  The rest of my night was filled with nausea and my vitals being checked every hour, sleep just wasn’t meant to be.

Stay tuned I have more to share but I need to rest.  With luck I’ll have another installment tomorrow.

Stuck in hospital

I told you all recovery sucks, I just didn't realize how much it would suck. Can't keep anything down and can't move without my head exploding. Luckily I am in a great hospital room because it is the brightest one in the hospital and my eyes are extremely sensitive to the damn light. If I can keep food down for the next 8 - 12 hours, they will let me go home.

I will let ya'll know when I get out.

I am alive

Just wanted to let everybody know I survived the surgery. The surgery was the easy part, the recovery sucks. I will have more details for everyone once I get out of the hospital. That's all I got right now.

It's On

7:30am is when my zipper will be installed…Sweet!

I guess the [insert any derogatory term here] staff at Albany Med decided to get one last parting shot at me.  I ended up having to call them to find out what time my decompression surgery is scheduled for.  There must be a secret file on me that the support staff can see and they know I called them monkeys so they are out to make me crazy.

Anyway…I’m glad that today was a busy day at work.  Being busy helped keep my mind off the impending surgery and kept my nerves in check.  I’ve never been a patient before so the unknown is what is getting to me.  I may get the occasional case of the nerves, but then I remind myself that after I heal I will be able to lead a normal life again – although some will argue that using the word ‘normal’ in reference to myself is an oxymoron. 

A few things I’m looking forward to:

-          A good nap while under anesthesia

-          Making people wait on me

-          Really good pain meds

-          Cruising the halls of Albany Med in a wheelchair and yelling at people to get out of my way

-          Telling people that I had experimental surgery and the scar is where they implanted a GPS so I’ll never get lost

-          Going to the store and when people talk to me pretending I can’t hear them and just point to my scar

-          Bending over without my head exploding

-          Laughing without pain

-          Running around and playing with the kids

-          Hugging Joyce without loosing my balance

Tomorrow is the big day, as soon as I can post an update I will.  Thank you to everyone for your love and support.

The Journey Continues

I wanted to write about this last night but I was in no shape or mood to even consider using the computer.  Chiari was being especially bratty yesterday.

Remember those Careerbuilder.com monkeys I talked about in the previous post?  Apparently they also run the hospital IT department.  Yesterday at 11:15am was my scheduled Pre-Op Screening appointment at Albany Med.  Figuring it may take a few minutes to get through Central Registration I arrived at 11:00am.  Thus began an odyssey of hurry up and wait.  It started with waiting at least 5 minutes while the woman at the “Stop Here” desk was on the phone trying to figure out why the patient in front of me wasn’t in the system.  Apparently the other two women in the same area as her aren’t allowed to help since they were busy doing nothing but looking at us with that “sucks to be you” look.  After 5 aggravating minutes it was my turn to check-in and…wait for it…get a number so I could go sit and wait to be called to the next available registration desk.  I got number 2; I was feeling pretty good about getting this low number until I saw that they were still on number 46.  I began praying that there were only 50 numbers in the pile, I mean after all how long could it take to check-in 6 people.  Perhaps I should take a moment here and let you all know that I don’t handle waiting very well, waiting results in me having great difficulty in keeping my temper and mouth in check.   It took 38 minutes to check in 6 people at 4 registration desks.  It was finally my turn, that’s when they decided to tell me that they were going live with a new system and they were having “issues”.  How about a sign at the “Stop Here” desk telling us what’s going on…damn monkeys!  I slogged my way through the slow check in process and proceeded to my next stop.

It’s almost noon when I arrive at the Pre-Op Screening check-in, which is across the hall from Central Registration.  I am greeted by a very nice woman, at least I thought she was nice until she handed me another freakin’ number and told me to go sit and wait until my number is called.  Oh for Christ’s sake!  This time I only had to wait for about 20 minutes; at least they had a television to keep us all amused.  It takes another 8 minutes to check-in, after signing a ton of forms I was sent back to sit in the waiting area and fill out some medical history paperwork and wait again.  At least this check-in area had a sign apologizing for the long wait, and informing us that they were using a new system.

It is now 12:30pm and I still haven’t been seen for my “appointment”.  For the next half hour I watched TV and looked around at the other inhabitants of the “fish bowl” waiting area.  Why refer to it as a “fish bowl”?  Because it’s a glass enclosed area just in from the main entrance so everyone that walks by can see us.  I would randomly wave to people when they made the mistake of making eye contact with me.  To further amuse myself; as I looked at each of the other inhabitants of the “fish bowl” I tried to figure out what their medical issue was.  I went with heart condition for the two guys across from me because they both seemed even more uptight then I was.  I went with cancer for the old lady next to me for the simple reason that she called everyone she knew to tell them she was being operated on for her cancer on Wednesday.  For the dude in the corner I went with neurological disorder since he was about my age and was using a cane.  For the lady on my right I went with stomach problems since she kept holding her stomach.  I’ll keep the rest of my amateur diagnosis to myself since they weren’t exactly family friendly.

At 1:15pm I finally heard the sweet sound of the nurse calling my name.  I wasn’t exactly shocked when the nurse told me that my blood pressure was a bit high…My exact response was “Jeesh I wonder why”.   I was then told to wait in the exam room for the Nurse Practitioner to see me.  Don’t worry I didn’t snap, I was cool with this wait.  I then got poked, prodded, questioned, told what I could and couldn’t do the next few days and was out of there by 2:15.

So thanks to the IT monkeys and their slow, barely working new system my appointment lasted 3 hours and 15 minutes.

Albany Med wasn’t done torturing me yet.  I still had to get my pain prescription refilled.  Time to call my primary care doctor in Albany Med’s Internal Medicine Group for the refill.  I was on hold from the time I left the Albany Med parking garage all the way to Exit 25 on the Thruway.  For those not familiar with the area, it takes about 20 minutes depending on traffic.  Don’t worry, my car has bluetooth, I wasn’t “on the phone”.  Since it was late in the afternoon it must have been too difficult for them to enter the prescription into the computer and send it along to the pharmacy because when Joyce went to pick it up it hadn’t been called in yet. 

Thank God I know the medical staff at Albany Med is awesome because the support staff, well let’s just say they aren’t so awesome…Freakin’ Monkeys!

3 days to go!!!!

Wash and Wear

Today was the big day.  Time to have some fun with the upcoming surgery.  I let the kids give me a buzz cut.  Not only do I look like a new man, I feel like one today.  Yesterday was brutal.  I was able to watch my wife and daughter take their Tae Kwon Do belt tests - they both did great and advanced a level - but that was it.  I spent the rest of the day on the couch with my eye's closed.  I couldn't sleep, all I could do was lie there with my eye's closed and listen to the television. It sure made Pawn Stars more interesting.  Today was sooooo much better, the headaches were little baby ones.  And now my hair is wash and wear, no more brush and no more gel.. 

On to the hair cut.  Let's see how I looked with all of my hair, I didn't even bother to comb it for these:

Time to start cutting, girls first:

Now it's our son's turn:

Look mom a mohawk



Moving right along:

TaDa!