My Chiari Story

So as many of you may now know I am in the process of starting up a new chapter of a Chiari Malformation Support Group in my area.  I am doing so because I am a "Chiarian" as we are often called because I suffer from a brain malformation.  I figured since I am going to start this chapter in my area I would share my story with everyone from start to finish.  It's a long one, so get comfortable and if you are a sufferer please consider commenting, joining one of the online communities I am happy and proud to be a part of ( I am not going to post the links at the end of the blog for privacy reasons but if you would like them, message me) and get involved with others who are going through the same thing. Believe me the support of others makes all the difference in the world.

Well to begin, my name is Jen and I was born in July 1983.  I grew up in a very small town (one I like to call po-dunk USA) population 6 (not really).  I had a lot of friends which looking back I wish I took better care of some of those relationships because as much as I would like to say I was a stand up gal back then I know I wasn't.  But we live and learn and we all go through it.

I was a cheerleader, a band geek, definitely not one of the "smart" kids but not labeled "not-so-smart" (to my knowledge) either.  I was average.  Never the center of attention, never the back of the pack, always in the middle.  That's where I liked it.  High school was blur, college a joke because I went to community college and then a business school where I did graduate with a 4.0 and on the Dean's List but I didn't go to my graduation because I didn't feel like it.  Nice huh?!  But that's who I was, carefree, did what I wanted and didn't have much to say about it.

In 2002 I met a wonderful man through mutual friends named Tom.  I was working at Wal-Mart at the time to help pay for school and have some fun money (not much) and it didn't take long for Tom and I to hit it off and fall for each other.  Within a few years we were engaged and by May 2006 I had a new job and a new husband.  Life was great!

We decided to start a family right away and by September 2006 I was pregnant :)  What a wonderful, and fulfilling point in my life.  But the joyfulness didn't last long.  I was getting such severe headaches, vision and balance changes and unexplained heart palpitations that my OB/GYN sent me to a Neurologist and Cardiologist by my 4th month of pregnancy.  

A magnetic MRI was conducted for my brain and it was determined I had a Chiari Malformation.  A who, what now?!  I never heard of such a thing.  Then of course I went to the Cardiologist and got the news that I had Super Ventricular Tacchycardia (SVT).  Oh great another ailment I knew nothing about and couldn't treat while I was pregnant but one that could make me drop on the spot.  Don't freak out the preggo chick!

I was immediately taken out of work and placed on strict bed rest and the baby was monitored very closely. My blood pressure kept spiking, my potassium kept bottoming out, and I retained more water than the Hoover Dam.  It was a a nightmare.  I ended up with Pre-eclampsia, Toxemia, and if it was pregnancy induced, I got it.  The pregnancy was very rough and I was given a 50/50 chance to make it through the birth so a C-section was scheduled and on June 1, 2007 we welcomed our little girl into the world.

My symptoms of pre-eclampsia disappeared over time but the Chiari and SVT symptoms kept getting worse and worse.  I was warned not to have any more babies as it would be a huge strain on my body, but I don't listen well.  So I took the chance and in 2009 we were pregnant again.

This time the pregnancy went great, no problems I was able to keep up with my daughter right up until the day my son was born.  However, the day he was born was the beginning of the end of all things going well up to that point for this gal's body.

My blood pressure spiked to 240/140 on the day of my 37th week of being pregnant, I was rushed to the hospital and admitted.  I had a boatload of protein in my urine, I became toxic, I had NO potassium or magnesium in my body so they did an emergency C-Section.  Before I went up I was told to call my daughter and say good-bye. It was the worst phone call I ever had to make, and of course I didn't tell her what was going on, she was only 2 at the time.  I just told her I was going to have her baby brother and she told me she loved me and I was so scared I would never see her little face again.

The doctor pulled my mom aside as my husband was racing to the hospital and asked her which one of us she wanted him to save because neither of us (my son or myself) had a chance of surviving.  I had less than 20% and I didn't get the number he gave to her for my little man.  So scared to death in I went to deliver on October 9, 2009 And to this day I have no idea how, but we both survived and my son had no issues at all other than being small.  Thank GOD!

After we were all home and settled I was rushed back into the hospital with high blood pressure again and re-admitted.  All these specialty doctors were called in, and I was told I had to be on Magnesium IV bags to stop my body from seizing because I was so close to stroking out.  Why was my body this?  What weren't they telling me?  

After an extended stay in the hospital and a lengthy stay on my couch I went to work with doctors.  They tested me for EVERYTHING!!!!  It all came back negative.  To this day they don't know what happened. Al they know is it's definitely no more babies for me, because my odds of surviving another pregnancy and birth are slim to none and I will not leave my babies.

So what does all this have to do with Chiari?!  Well I found out I had it because during pregnancy you aren't supposed to have headaches, but the increase in blood that your body produces due to pregnancy created more pressure in my head and neck because I already had a blockage of brain fluid and blood due to my Chiari but that was never discovered until I had a flow study done in 2009.  I could have and probably should have had a stroke with either one or both births.  It's a true miracle that I did not.

I had a Cardiac Ablation in 2010 to cure the SVT but they found I have A-Fib while they were ablating that so now I live with A-Fib.  I had the Chiari Decompression surgery in June 2012 but my symptoms are back with a vengeance so I'm looking into a possible second surgery with my Neurosurgeon. I had an L5-S1 back fusion in January 2013 because my spine is deteriorating and I had massive herniation and nerve damage and although the fusion itself worked to bring my spine back in place I have too much scar tissue around the fusion and my spine is still deteriorating so unfortunately the pain is still with me.  I have some spinal spurs in my neck and I am a class 2-3 for my neck curvature deterioration.  I am looking into being tested for EDS syndrome which thanks to the WONDERFUL online support groups I have just learned about.  I really believe that could be the root of a lot of my pain and problems.

 Day 1 Chiari Surgery

Day 7 Post Op

Day 8 Back Fusion Post Op

This is an abbreviated (believe it or not) version of my story.  I am hoping it will help someone along the way to show that if you are going through something similar or have similar ailments, you are not alone.  There were days I wanted to give up.  I seriously wanted to end it all.  But my children are my life and I went through these surgeries and I am fighting so hard to be as "normal" as possible so I can give my children the best life possible.

I am frustrated that I cannot go to work anymore.  I am allergic to so many medications that I break out head to toe in hives so my pain medication is essentially tylenol (tic tacs) ibuprofen (mentos) and some pain meds that my pain management physician has tried.  But a lot of those I am allergic to also or if I'm not allergic to them they make me spacey and it's difficult to focus.  I can't ask an employer to give me special arrangements because I have ailments, that's not fair to those who don't.  It's also not fair to have to live like this.  But so many of us are and I believe that with the support of others we can fight back against the depression, the anxiety, and the disease itself.  

Sometimes the pain is enough to make you crazy.  You look completely fine on the outside but on the inside you're dying.  People judge you because they have these awful diseases that they are going through and physically they look sick and to them you almost look like you're faking.  It makes me angry and sad because we aren't faking, we aren't lying, we are hurting and we don't wish any pain on anyone we just want the pain to stop for everyone.  

That's why starting this group is so important to me.  My story has a lot of details, the intimate details missing, but you will find that I blog a lot of those when the time is right for me.  Sometimes the days are too much to bear and other times I am just grateful to be on this earth with my kids.  My story is far from over and I am interested in hearing more of my new friends' stories.  I hope that I can support everyone the way you have all supported me.  

From my family to yours, thank you all for listening.  Hugs and prayers to all <3

Chiari Malformation - Dealing with the pain

As most who read my blogs know I was diagnosed with a Chiari Malformation in 2006, I had the decompression surgery in 2012 and although the surgery itself was a success as time presses on my symptoms have been coming back as many "Chiarians" as we are affectionately called have experienced, except once the surgery is done the symptoms come back stronger.  Fantastic.

So if you have a Chiari you know the pain I am talking about, if not well you will not fully comprehend the pain because it really cannot be described.  It's a pressure like no other, a migraine times a thousand, your brain feels like it's on fire, your neck is always in a knot and your spine is always out of alignment and that is on a good day.

It sounds a lot like I'm whining and perhaps I am a bit so I apologize for that.  Moving on.  I have joined a bunch of online forums and online community support groups and I cannot believe how similar the stories are and how much support I feel and how I feel I can support others.  So many men and women who haven't had their surgeries yet and are so scared to do so.  I think back to mine and remember feeling the terror, wondering if I would survive at all, worrying about CSF leaks, all the details....it was so overwhelming.

Now listening to these people I can share my story and actually help to calm them.  What to bring to the hospital what not to worry about.  I know that down the road I'll need another surgery so I ask what to so with the second and third one and how these people handled theirs.  A terrifying thought but none-the-less things I need to ask.

Of course every now and then someone puts up a picture of a lit purple candle to signify someone lost their battle with Chiari.  Although this disease does not have the mortality rate as some other diseases it can take your life just as quickly.  It's a harsh reminder of the reality that is only skin deep.

Not every post on these forums are sad or scary.  Some are happy and light.  One woman posted how she wasn't a "zipperhead" as we are also called because the scar looks like a zipper on the back of your neck if staples are used but in her case her surgeon used glue and dissolving stitches.  I'm excited because it's been a year and a half and my once completely half shaven bald head is now fully grown in and the same length.  My hair dresser just cut it yesterday and for the first time since I had the surgery she didn't have to get out the buzzers or put the other half of my hair up and she said it's finally grown in.  I realize it sounds petty and vain to some people but to walk around for a year with people staring at you wondering what disease you have really eats at your self esteem.  So small victories.

Now it's dealing with the pain.  The constant migraines, neck pain, back pain, vision changes, balance changes, medication changes and all the fun crap that goes along with Chiari that was supposed to be gone for a while but now is back with a vengeance.  Am I going to bitch about it?  Probably, a little bit.  Am I going to break down and cry?  Occasionally.  Will I curl up in a ball and ask why me?  Once or twice I'm sure.  But will I get up and keep going?  You bet your ass I will.  I kicked it's ass once, I'll do it again.

So to all my fellow Chiarians out there, it sucks a lot to have it, it sucks even more to deal with the pain, but we are strong, we are fighters and we can beat it.  My advice is to join some online communities if you haven't already, get involved if you have a support group locally.  If you haven't looked into a Neurosurgeon already, get all the facts and get at least 2 opinions on your case.  It's a hefty decision and you should have all the facts.  Best of luck! <3

Childcare

What is a parent to do when it comes to childcare?  You have children because you have decided at some point that you want to be a parent, which means raising a child from infancy to adulthood and beyond. However in order to do so you need to not only teach them how to be a good person and have good values but also give them necessities like food and clothing, etc. as well as things they want like toys and what not without spoiling them rotten so they become bratty.  Being a parent is without a doubt the most difficult job in the world and by far the most important.

So with such an important job how is one supposed to raise a child and at the same time pay for a child? Let's examine this shall we?  You have a baby, you are overwhelmed with joy and scared out of your mind because you have no idea what the hell you are doing.  Suddenly you have to take care of this little human who is relying on you to keep it alive, no pressure.  Luckily for most your instincts kick in and you figure most things out.  You run on no sleep, no shower, barely any clean clothes and no food for yourself.  That beautiful baby however needs diapers, clothing, formula and those items add up to your grocery bill for yourself for the month.  You start wondering how you are going to make it and how you will pay for childcare which is a whole other ballgame all together.

You somehow make it through and it's time to go back to work.  You find a suitable sitter that you are comfortable with but as per most childcare providers it cost $$$$$.  You realize you are now just working to pay for childcare and pay your car payment.  But you have to work right?!  I mean you have a baby. You start looking for another job to pay the bills, but now who is raising your baby?

This is a common problem that so many people are facing right now and so I decided to blog about it.  I myself have 2 children who are school age but I went through the same thing.  We did things a little differently and had family members watch our kids but it definitely wasn't free and it still wasn't the best option because we didn't have kids for other people to raise them.  

It's a constant battle that so many parents are facing and it can be so overwhelming.  I am absolutely no expert on the subject and to this day we wish we did things differently but I can honestly say if you are stressing over childcare you are not alone.  Talk with some friends or other moms about their childcare options and how they handled or how they are handling their childcare.  Sometimes you find a better option for your family.  You can never be too careful with your kiddos and you always want to do what's best for your family.