*Chiari Malformation Decompression Surgery*

*Chiari Malformation Decompression Surgery*
It’s been a long few days and I haven’t been writing for a while. I found myself overwhelmed with everything I had to do to prepare for my surgery. I finally did it though. Surgery is done. I can honestly tell you that it was nothing I was expecting and that there was no way to prepare myself for it. Before I get ahead of myself let me bring you back to the beginning. I spent the days leading up to my surgery with my family. The kids mostly. The night before surgery I had to fight myself to put Taylor down for bed and found myself wanting to rock Carter to sleep forever. I finally got the kids in bed with only sheading a few tears and finished getting all the last minute things done. Jordan got home from work around 11pm and I stayed up with him until almost 1am. I surprisingly slept well and awoke to the sound of Carter crying AND my alarm going off at 5:30am. Jordan headed for the baby while I headed to get ready. The house was quiet and I had a knot in my stomach. I kept wishing I could climb back into my bed and wake up in a few hours and realize all of this was a dream. I couldn’t believe I was leaving for brain surgery. Jordan’s mom (Janice) came over to stay with the kids when we left since it was to early to get them up. My dad, Jordan and I all climbed into my dads car and headed to the hospital. It was a short ride that seemed to last forever. Especially since my dad is used to being awake so early and was attempting to start conversations with a less than enthusiastic me. When we arrived at the hospital we all walked into the main lobby and were brought to the surgical waiting room. Being in the room is like going to jail… everyone looking at each other and you can just see the thought bubble above everyone’s head with them thinking the question “What are you in for?” I managed to mind my own business and not ask anyone why they were having surgery and after a few minutes my mom walked in, Then the nurse to bring me to the next stop on the surgery trip. Next was height and weight. 125lbs and 5’5” tall. Check. Next we went into the surgery prep area where they listened to my heart, breathing and checked my vitals. I had a pregnancy test done (Negative by the way ;) ) and then got to change into one of those adorable hospital gowns. They should call them hospital rags not gowns . While I sat with my parents and I fiancé I decided it was time for some pictures just in case I died (Yep slightly dramatic but if I survived I wanted pictures anyway) After a few eye rolls from my family and a few shots of the camera I was back to being bored. I was trying to think of anything else besides surgery. My nurse was so nice and for some reason she reminded me of my Grandma. It was comforting.

Me and My Fiance:


Me and My Dad:


Me and My Mom:


The time quickly came to bring me to the Surgery holding area. This was my last chance to get off the surgery train but I stayed aboard. Hardly showing any fear aside from my continuous questions of … “Do I really have to do this?” and “Can’t we just go home?” My surgeon came in and talked to us, My Doctor’s name is Lynn Hedeman. He is the most amazing Dr. I have ever met. All of the nurses in the hospital said that same thing about him. They all said that if they had to have a brain or back surgery they would all have him do it too. (I am so thankful that I went against my own doctors referral and found my own Doctor.) Dr. Hedaman’s assistant and the anesthesiologist also came in. They hooked up an IV, gave me a shot of anxiety meds and I was on my way. This is where my mind gets fuzzy so bare with me while I attempt to remember what happened. They rolled me into the operating room. I remember the bright lights and listening to a woman speaking. That was it. Next thing I remember I was in a darkened room surrounded by shadowy figures that I later came to realize were my family. I was in the Intensive Care Unit and you couldn’t really wake me up for anything. I remember seeing Jordan and I remember My mom and Janice’s voices. The rest of the night was a crazy, sickening blur. I had such a headache that no amount of medication could help. They started with the Morphine and that didn’t work, next came the Diludad, vicodin, flexeril, a steroid, Tylenol 3 and motrin. Head was still pounding. I hadn’t thrown up since I was 6 years old and all of a sudden… yep. Apparently I still could. Over the course of the next 24 hours all I remember is waking up enough for a nurse to ask if I was ready for more pain meds and I would say “yep” next I would feel the injection rush course through my veins and then I was out until the next time. I couldn’t eat, I couldnt do anything. Anytime I would sit up I would get a throbbing pain in the top of my head that felt like a hammer wailing down on me. I choose to stay laying down to avoid it. Day 3 in the ICU I started to come alive a little bit. I was finally able to get up to go the bathroom but had to lay back down right away. A physical therapist came to my room and had me go for a walk with her. I had to walk up and down a flight of stairs too. My head hurt so bad and I had to hold my neck to position my head in a certain way to avoid the shooting pains. I did so good that they transferred me to a normal room out of the ICU. I spent my night watching a movie (With a ton of breaks) and then heading to bed. I was so out of it. My eyes couldn’t focus on anything, I was dizzy, I was weak and had trouble walking and I was so nauseous!

Day 3 Post-Op:


Jordan:




My big bandage:


I got to go home on day 4. My dad came and got me and I was able to get up a little and walk to pack my stuff up. The ride home sucked. I had to put the seat back and hold my neck.

My Incision 4 days Post-Op:


I managed to get home and climb into bed where I parked myself for the next 24 hours. It has now been 5 days since brain surgery and today has been my best day. I still have a headache. Im still tired, dizzy, nauseous, and just generally feel like crap but I made the best of it. I spent my day lounging in the sun in my bikini listening to my IPOD and watching lifetime movies all day. I finally was able to take a shower which I can honestly tell you was not my favorite thing to do. Part of my head is numb to anything besides pain so I didn’t feel the water on it but when I touch it, it hurts!. Washing my hair was not fun but at least I was finally able to wash the hospital off me. I felt disgusting. My brother, his girlfriend and my nephew stopped by today and that brightened my day a little since my nephew is so stinkin cute! Ill update more as I recover. Ill try to make this daily thing for a while .

*My family has told me that my Neurosurgeon came and talked to them after my surgery and informed them that In his 43 years of doing this, I had one of the worse Chiari Malformations that he had ever seen. My MRI didn’t even show how bad it truly was. We had thought it was only herniated to my C1 vertebrae and apparently it was down to my C2. He said that I would have had to have this surgery done no matter what because If I didn’t I would have become paralyzed. *

Saw the Hematologist today!

Today I had my appointment with the Hematologist. For those of you that arn't aware of what that is it is a blood doctor. Its a little late but i got blessed with a Chiari headache earlier and felt like i was going to throw up from the brain shakes I was getting. Anyway, I had to go see him before my brain surgery because my blood tests from a few months ago came back that I was pretty anemic. My Neurosurgeon wanted to clear it with him that I was safe for surgery. I went yesterday and got my blood drawn again and went i first got to my appointment today I asked for a copy of those results. I compared them to my old test results and was shocked to see that my levels were much higher. I told myself that i wasnt a doctor and to wait until I saw one to get excited. It was a sad place to be. So many men and women in the waiting room were there battling leukemia and other serious and life threatening blood disorders and i felt guilty. I felt guilty because i felt bad for myself when i found out I had Chiari. As i sat in that room flipping though a pamphlet of wigs and women's hats to hide the hair loss from the cancers treatments I felt lucky. I was thankful. I waited for an hour to see the doctor and when i got there they brought me back and weighed me. (123lbs by the way.... WhoHoo only 3 lbs to go!) Anyway, They took my blood pressure which was somewhere around 110/60-something. Next was my height... 5'5". I was then brought back to a room overlooking the new highway they just built. The Doctor came in and sat down and went over my blood test results. He saw that I was pretty anemic and wanted to do an exam. He had me sit on the table and listened to my breathing, next he had me lay back and listened to my heart, felt my stomach and my neck. Then they had me sit back up and told me I could go sit back in the chair. Thanks to my Chiari I was so dizzy from everything that i stumbled back to my chair as if i was drunk. It took a few seconds for the room to stop spinning and for me to realize the Doctor was talking to me. The doctor then asked what I had tried for the anemia. I told him that I had taken oral iron supplements and had awful side effects from them so it wasn't an option. He then said the next step would be an iron infusion. I panicked. I had read horror stories about those. I heard they caused awful bone pain for days afterwards and that many people were actually allergic to what they were injecting. He said if that didn't work than I would have to have a blood transfusion. The doctor told me that he wanted me to get my blood drawn before I left so he could check the Iron levels since it had been so long. I said, "well, what about yesterday's tests?" He said "you had your blood drawn yesterday... I dont have those results in my computer." I showed him the print out and he was amazed. I was no longer anemic. He said that i must have been eating foods high in iron because that is the only way you get iron into your body. What he doesn't know is that i dont eat anything with Iron (well, besides chocolate). I hardly eat vegetables and I do not eat red meat unless I have to which is very rare. I take an herb called Maca root. It fixed me. I was cleared for surgery and have a follow up in 3 months. I feel extra lucky tonight!

Next appointment before surgery therapy. Yes I see a therapist and she seems to makes dealing with this easier. She is a continuous reminder that I am strong. Ill update again after my appointment with her and after that is my appointment with my Dentist to fix a cracked tooth I have. I wouldnt want to have tubes down my throat during surgery and have something crack my tooth more and wake up with head, neck AND tooth pain ;)

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Below is a picture of my brain MRI. Everything in between the 2 pink lines should be above the top pink line.

My Story...

I guess now is the time that I share my story...

I was always sick. From the time i was little there was always something wrong with me. I was often told that there was nothing wrong with me and that it was all in my head. I missed a ton of school. I had my son when i was 16. I got had an epidural with my delivery of him. After I had him i struggled with a ton of digestive issues but was once again told that there was nothing wrong with me and that it must be due to stress and anxiety.  After literally being stuck in bed for 3 years, losing 70lbs because i couldn't eat, multiple tests and numerous visits to the hospital because of what was "all in my head" and a surgery to repair my collapsing intestine,  I then got pregnant with my daughter. Final diagnosis: Irritable bowel Syndrome and Endometriosis. I had my daughter when i was 19. During my pregnancy with her I had a spinal for a medical procedure i needed in mid-pregnancy i began experiencing severe nausea and dizziness. I was tired all the time and just didnt feel good. I assumed it was due to my low Iron levels and pregnancy. I then delivered her via C-section after yet another spinal. The symptoms didnt go away after I had her and I then developed a severe hormone imbalance. I had practically no estrogen. I was put on estrogen patches. Once again I endured multiple medical tests and medicines but no doctor was able to tell me what was wrong with me. I was stuck in bed yet again but this time I thought i had suddenly developed allergies. My symptoms were a feeling that i couldn't breathe, dizziness, headaches, severe menstrual pain, muscle pain, severe fatigue, and continuing digestive issues. I developed heart palpatations. Final diagnosis: Hormone Imbalance, Adrenal Fatigue, PMDD, heart murmur and fibromyalgia. Another 3 years passed and I was pregnant with my youngest Son. I underwent the same mid-pregnancy procedure with a spinal. While pregnant with my son i began to develop numbness in my arms and hands. I thought it was the baby sitting on my sciatic nerve. My area around one side of my mouth went numb, i felt like i was drooling but wasn't, I felt pressure behind my right eye, I felt a fullness in my right ear, I had headaches that stemmed from the back of my neck up my head (what I thought was a tension headache) I began to have lines in my vision that didnt go away. I saw spots, I was still dizzy, i couldnt function. I gave birth to my second son with the help of an epidural. These symptoms didn't go away. When my son was about 2 1/2 months old i started being awakened at night by what i call brain shakes. It felt like my brain was shaking inside my skull but if you looked at me, i wasnt shaking. This shaking would sometimes radiate into my arms. This went on for 2 days before I got really freaked out and went to the Dr. The doctor sent me for a brain MRI because he thought I had Multiple Sclerosis. My symptoms were only on the right side of my body. After the MRI i went home and waited for the results. About a week after my MRI I got a phone call and saw on the caller ID that it was my doctors office. I answered and It was my Doctor. The first thought I had was "crap, this isn't good." One thing i had learned with all of my medical issues was that when the nurse called me everything was fine, when the Doctor called... it was bad. He told me I have a Chiari Malformation. I said "what the heck is that? Ive never heard of it before." He explained to me that it is when my skull isn't big enough for my brain so my brain is pressing up against my skull. It was pinching my spinal nerves and causing these symptoms. I was then sent for a spinal MRI to determine how bad the CM was and referred to a neurosurgeon. I waited for 2 weeks to get in to see the NS. The day of my appointment my brother and his girlfriend came over to watch my kids and my mom and dad (who are divorced) came together to bring me to the NS and learn my fate. We waited in his office for about an hour before he finally came in and said “So you have a Chiari Malformation… You have a very bad Chiari Malformation. Apparently it is 16mm in length. The Dr. spent time explaining to us how the surgery would go, what to expect after surgery and how long I would be out of commission for. Brain surgery is set for June 8^th, 2011. Final diagnosis: Chiari Malformation.

Chiari robbed me of my life. I had to drop out of school and graduate through the mail. Ive never been to a dance. I couldn’t take care of my first son. I haven’t been to a movie theater in 6 years. I lost all of my friends and just had an awful life because of being sick…. But im happy. Im happy this has a treatment, Im happy my kids are still young enough to have a healthy mom, Im happy I still have my family, and Im alive.

*Note- i mention the Spinals and epidurals because some say it makes Chiari worse when a needle is inserted into the spine.*

Why I'm Here

I decided to start blogging as I go through this new diagnosis of Chiari Malformation and the treatment. I am scheduled for a type of brain surgery that is called Posterior fossa decompression. This will better explain the surgery:

The operation to decompress the lower brain stem
and cerebellum will require a general anaesthetic.
Hair over the occiput will be shaved and the patient is
positioned on their stomach giving access to the back
of the skull and neck. An incision is then made in the
midline of the neck to expose the skull and neck
bones covering the brain stem and cerebellum.
Careful removal of a window of bone at the base of
the skull is then performed using a high speed drill.
A laminectomy of the upper 2-3 cervical spine
vertebrae may also be performed. The bone removed
is not replaced, leaving a spacious cavity.
Frequently the lining of the brain and spinal cord
(dura) is then opened allowing further decompression.
A graft is then stitched into place. This graft may be
synthetic or may be taken from the patient’s own thigh
via a separate incision. The wound is then stitched
together and the patient is awoken. The procedure
takes around 4-5 hours to perform. Postoperative
wound pain is an issue but is easily treatable.

This is going ot be a crazy week for me so ill update as I go. Later today ill post my MRI images and what lead me to seek testing, including my symptoms.