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!