Sunday, April 1, 2012

The Days Leading Up

Those last few days prior to surgery flew by, but at the same time drug on for what felt like forever! I wasn't even close to being ready to have a sub come into my classroom. I had a lot to get done and the stress I was feeling was unbelievable. I had a surprise all day meeting pop up on the 20th. I had planned to get much of my things together that day while the students did their seat work. In stead I spent 2 hours Monday night preparing sub plans for Tuesday. The meetings themselves were OK, but by the time 1:00pm came around I had she a bad headache I had to leave and go home straight to bed. So that meant another evening I was going to lose due to this damn thing. Wednesday came around and I really felt stressed out. I was supposed to start my leave the next day and I had very little done. I found an extra long "educational" video for my class to watch as a "celebration" for Mrs. R being gone next few weeks. Luckily we also had specialities and music scheduled that afternoon too. I worked hard and go much of the plans thyself written and organized. I knew I would have to come back later to finish up, but for the first time in a long time I actually left work feeling productive. I need up having to go back for another 4-5 hours to make copies and organize it all, but I finished and was in bed by 1:00am to start my "break" free of school worries!
Thursday was booked full of appts and I was so glad it was. I kept my mind occupied and away from all the worries of surgery. My brother, DA and his wife V, came and spent the day with us. V cut all my hair off and colored it so that when I looked in the mirror after surgery I would at least see some cute hair in the front. J and I went to Tucanos for lunch and just enjoyed each others company for a few hours. The food was amazing and I didn't want to leave! I already want to go back and devour me some more beef!!! DA and V took my 4yr old M with them so he could pend the week at my sister's house. I had a really hard time saying goodbye. I didn't want to let him go cuz that meant I really was having this surgery done. The rest of the day was spent doing laundry, making beds and organizing the house. My mom arrived that evening and we watched a movie with the kids. J and I even went to Walmart to waste time at 9:00pm. We got me some comfy clothes and and then just wasted time looking at things. We knew sleep wasn't going to come easy, but we decided we better try and get some because we knew 4:45am was going to come way early! Believe it or not I slept really well once I actually was able to achieve it.

Monday, March 19, 2012

Finally some good days!

After my visit to the ER I decided that I needed a few days off from work to just rest. I took both Thursday and Friday off and I am so thankful I did! Thursday was spent just laying in bed and catching up on the lost sleep from the night before. Friday I wasn't as lucky, but I did try to take it easy. We had planned a combined birthday party months ago for M & B knowing I would need back surgery in April. I knew I wouldn't be able to do much for a few months after the surgery and I really wanted to have some fun beforehand. A birthday party for the kids sounded like the perfect excuse. We called a good friend who is a DJ to play for us. His only free weekend before my surgery date was March 17, so we took it! You should know my husband is Mexican and Mexicans just don't know how to have small parties. You either go big or don't go at all...LOL. It was just a few weeks after we set the date that I received my Chiari diagnosis and Surgery would be moved up to March 23rd (note that is just 1 week post party...eeek!!!) We all figured things would stay stable until the surgery, so we decided to go ahead with the party. I never thought in a Million Years that I would go downhill so quickly in just a month's time or I would never have tried to take on the daunting task of planning a party this big. However, with that said I sure am glad we did it! I had tons of help and believe it or not I wasn't even stressed. I love to plan parties and so we always have to go all out, but this time I had the mindset of whatever got done got done. As long as we had food, music and cake the party would be perfect! It was a rainbow theme and I had a blast making 2 6 layered rainbow cakes, decorations, and planning out the amazing menu. Our close family and friends really stepped up and did a lot of the physical parts for me. We had about 200 guests show up and from the looks of it they all had a great time. I wasn't able to dance or roam abound too much, but I had fun just watching my kids play. Even if it was only for 1 day I felt "normal" My aches and pains where being kept under a 5 on the pain scale by meds. It truly felt like I was back the good old days before my accident (other than the pain part of course.)

When I woke up Sunday I was back to my new normal self. The pain was back full force and I wasn't able to get out of bed. It took every ounce of energy I had to even go to the bathroom. Do I regret the fact we had the party? HELL NO!!! My husband and kids deserved to have the fun. All they have seen for over a year now is a sick/pain ridden person who has replaced their once fun filled wife and mother. I so wish I could go back to the day the accident occurred and change it all. I want to be myself again....... I just pray that this surgery will do that for me!!!

Thursday, March 15, 2012

Talk about fast service...

I decided I couldn't take the pain anymore and had J take me in. From the time we walked through the doors till the time we were on our way home was a total 35 minutes. They could win some kind of an award for that! You could tell my nurse had no clue what a chiari was and when my blood Pressure was 122/43 she tried to explain to my why it could be like that and I just responded with that is a symptom of a chiari. The doc seemed to know a bit more and was baffled that I was having pain all over my body, but I told him that it can happen. Well and that I have a herniated disc in my lumbar region. I'm sure it's spazzing out too. I mean hello I haven't exactly had the best of posture lately. Anyway the shot me up with some Stadol and sent me on my mary way. It's been about 20 minutes and my nurse said it takes 30min to get the full affect. I sure hope it all of a sudden has some kind of a magical explosion because otherwise this chica is still going to me in mega pain. Yes I know I'm being silly, but I'm trying to do something to take my mind off it all.

Advice to those who seek medical attention: Carry around a reference guide to Chiari Malformation along with symptoms or you my just get the confused look from those who are supposed to be the medical experts!

Wednesday, March 14, 2012

A Really Bad Day

The last few days have been pretty good. In fact Sunday I didn't even have to take a pain pill! It was the beast day I have had in months. Monday and Tuesday went fairly well too. I only had to take 1 pain pill in the morning before work and it got me through the whole day. Today that was not the case. I woke up in the most pain I think I have ever been in. My whole left side hurt so bad that I thought I was going to die. I could hardly move! My whole body was trembling from the pain and I kept get big tremors in my hands/arms that I couldn't stop. I just had to let them pass on their own. I still went into work, but I knew it was going to be a rough day! I am trying to get everything ready for my surgery next Friday and I just couldn't do any of it. I had pain written all over my face and every time someone would ask me if I was OK I would get weepy. My sweet hubby came over and helped me out by organizing, moving furniture and hanging up word wall words. I don't know what I would do without him! He truly has saved me!!! I made it through the day, but it wasn't one of my best teaching days. I came home and just went to bed. When I finally woke up the pain had moved to my whole body =( I am in so much pain and I just don't know what to do. Do I go into the ER? Do I just deal with it and hope tomorrow is better? I just don't know. Next Friday isn't going to come soon enough!!!

Tuesday, March 13, 2012

What is a Chiari?

What is a Chiari Malformation?
Chiari Malformation Type I (CM) is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid (a clear fluid which bathes the brain and spinal cord).

Does the size of the malformation matter?
Traditionally, Chiari Malformation has been defined as the cerebellar tonsils descending more than 3-5mm out of the skull. However, research has shown there is no real correlation between the amount of descent (or herniation) and clinical symptoms. Some people with herniations of less than 3mm are extremely symptomatic and some people with quite large herniations are symptom free. Because of this, doctors are now focusing on whether the cerebellar tonsils block the normal flow of cerebrospinal fluid (CSF). The current theory is that disruption of CSF flow is a more important measure than the size of the herniation.

How did I get this condition?
Chiari was originally thought to be a congenital condition - meaning you are born with it. While this may be true for many people, published case studies have also demonstrated that Chiari can be acquired and even reverse itself if the source of the problem is removed. It is not known how many cases are congenital and how many are acquired. Complicating the situation is that for reasons that aren't clear, some people develop symptoms as children, and some people develop symptoms as adults. What triggers symptoms is not fully understood.

How is Chiari treated?
If the symptoms aren't severe, doctors may recommend just monitoring the situation with regular MRI's and treating the symptoms individually. However, if symptoms are interfering with quality of life, are getting worse, or if the nervous system is being impaired, doctors may recommend surgery. The most common surgical treatment, performed by a neurosurgeon, is known as decompression surgery. An alternative surgery involves placing a shunt (a tube like device) to channel the flow of CSF and relieve pressure.

How do I know whether to have surgery?
The decision whether to have surgery is up to each individual and their doctor. Some of the factors that are considered are the severity of symptoms, whether the symptoms are getting worse, whether the nervous system is being compromised, whether there are any complicating issues, and the surgeon's own experience and judgment. Unfortunately, there is no single, objective measure to say whether someone should have surgery and many patients will find that different doctors may have different opinions.

What is the surgery like?
Decompression surgery is a general term used to refer to any of a number of variations on the same basic procedure. The goal of the surgery is to create more space around the cerebellar tonsils and restore the normal flow of CSF. The procedure involves removing a piece of the skull in the back of the head near the bottom (craniectomy). Often part of the top one or two vertebra are also removed (laminectomy). At this point, depending on the individual case and doctor, some doctors will also open the covering of the brain, the dura, and sew a patch in to make it larger (duraplasty). There are many variations in how the surgery is performed, including (but not limited to) how much bone to remove, whether to open the dura, what type of material to use for a dural patch, whether to shrink or remove the cerebellar tonsils, and whether to replace the missing piece of skull with anything. Unfortunately, there is no consensus, and no strong evidence, on which technique(s) is the best. Because of this, it is important for patients to understand specifically what their surgeon will be doing and why. The procedure itself lasts several hours and most people will spend a night in the ICU and an additional couple of days in the hospital.

Is the surgery always successful?
Unfortunately, there is not a lot of strong surgical outcome research, but there are enough reports to get a general idea of the overall success rates. For patients with just Chiari (no syringomyelia), up to 50% become symptom free after surgery, with another 10%-30% improving significantly. On the flip side, for 10%-20%, the surgery will be a failure and they will likely require additional surgeries. Keep in mind these are not scientific numbers and each patient should discuss their own chance of success with their doctor.

My Story

I was hit head-on last March just 4 days after having my last baby by an 18 year old who was texting. He ran a stop sign, grazed the front end of a truck who had proceeded into the intersection. I was driving and saw it all in slow motion. I began to pray that he would stop before hitting my truck. Unfortunately he hit my truck on the front driver's side , came around hit the back of the driver's side and preceded on about 15ft before coming to a complete stop. I took most of the impact, but my mom, newborn and 9yr were also in the truck. We all had to be transported to the hospital via ambulance to be evaluated. I suffered pretty bad whip lash and a wedged vertebrae in my T Spine. My body was not in any place to be in an accident after just having had a baby. It was bad! I immediately started intensive Chiropractic care 4 times a week with a weekly massage for the next 8 months. My symptoms improved pretty quickly, but it was like I hit a certain point in my treatment/recovery and I just didn't improve anymore. If I ever missed an appointment I was in tons of pain and basically I didn't function. After not improving any further I was referred to a neurosurgeon in my area. On January 19th I had my first appointment with Dr. G. At that time I had only had an MRI of my lower back done. He looked at the films and said that I needed to have my lumbar region fused because the accident had also herniated my L4/L5 disc. He asked if I was having any other symptoms and I told him about my horrible head and neck pain. He decided it would be a good idea to have a full MRI done of my spine. He figured that I had herniated a disc or 2 in my neck and that I would need to have them fused also. I was having other symptoms that are typical of a Chiari, but at the time I had no idea it could all be related, so I didn't even mention them to the surgeon. It was then that my life would change forever......

I went in on Feb. 2nd for my MRI. I was there for 3 hours and it was some of the longest and most painful moments of my life! I was given the films immediately, but the radiologist had gone home for the day, so I had to wait for the report until Friday. Friday came and went, so finally on Monday I went in and they handed me 4 pages of results that stated in black and white that I WAS NOT CRAZY!!! A 1cm Chiari had been found on my cervical MRI. Most people would have seen the word tonsils (crebellar tonsils) and thought it had something to do with their throat. I had a feeling that it was more than just that so I visited Mr. Google. Holy cow was I freaking out by the time I finished reading the first site I clicked on. My brain was no longer in my head!!! I still was not sure how or why it happened, but having my brain hanging out the bottom of my head couldn't be good. I immediately called the NS's office, but they were closed. I then thought of Dr. Ned my chiropractor. He is always in his office later. He answered immediately and tried to explain things to me the best he could. I LOVE Dr. Ned!!! He said we finally had the missing piece to our puzzle and all my symptoms fit perfectly! The next morning I called Dr. G's office and spoke to his nurse. I asked that I speak to someone asap!. Matt his PA called me a few hours later, but unfortunately was of no help. In fact I felt even more frustrated than I had before he called. I would have to wait a whole week and a half before I could see Dr. G in person. That week ended up being 3 weeks due to him having an emergency. Talk about an excruciating wait! But the day finally arrived and surgery was scheduled. I was not as impressed this this appointment as I was with my first, but I have been told that Dr. G is one of the best, so I can look past the bedside manner.

Once Dr. G determined that surgery was necessary to correct the issues with my back my lawyer told me I could no longer continue receiving chiropractic care or massage therapy. Insurances will not pay for treatments if they can't "cure" you. They don't care if the treatments are keeping you functioning until another treatment works. You get to just suffer until. These treatments were the only things that kept me functioning! I have deteriorated pretty steadily and many days are spent in bed sleeping or trying to find a position that lets me be somewhat comfortable.

I have missed out on so much of my life this past year. Most days I am unable to pick my baby up or if i do I have to grit my teeth and just take the pain. I feel like I have just missed out on life in general this past year all because some stupid kid couldn't stay off his phone and pay attention to his driving. I will never have to memories I missed out on making back. My baby will be 1 this Friday and I can't just ask for a do over. What I have missed, I have missed and I have had to learn to deal with that. This new life has not been one I would wish for, but I do make the best of it that I can. On day I hope I can look back on it all and say it was worth it or even better say I am cured!!!