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
No comments:
Post a Comment