Update

Hello friends! It has been way to long since I last updated. I had my decompression surgery  done by Dr. Ali Krisht on April 4, 2012 and he said I had the worst case he had ever seen. Having a world renowned surgeon who has done this surgery hundreds of times tell you that yours was the worst is sort of scary. He did say that I should live a more fulfilling life now, and I think he is right.  Although things are looking up, I am slowing coming to terms that I will always be fighting Chiari. It's been exactly 5 weeks since my surgery. I still can't laugh without extreme pain, and yawning makes me want to cry. I still have some pain in my incision but it’s getting better every day. Some things are better though, NO numbness in my arms or legs which is AMAZING! Also I seem to have less headaches, even though I still have my bad days, I seem to have more good days than before. Also I have full range of motion in my neck and have for weeks. I drive myself, and do light cleaning and am able to help Emery more. The beginning of recovery was really emotional for our family. Not being able to pick Emery up was really hard in the beginning. Now she is happy to crawl up in my lap, but the tears were extremely hard for me to hear in those first few days. I seem to be able to think more clearly too, which is awesome! Maybe now I won't tell you the same story five times now, (don't count on it though, because I love to talk!) My nausea is much better too. Dr. Krisht said because my case was so bad, he had to work around the nausea control center in my brain, so I was very queasy for a long time, but now it’s only occasional. I went to the gym last week and the bicycle gave me just enough of a workout to get me sweating but not hurt my head. It was good to work out, but it really just made me miss Zumba. I hope to teach Zumba someday, I love it that much! Best workout ever! And when the whole class is miserable doing squats or leg lifts I will shout " I had brain surgery! KEEP GOING!" lol

I go back to Little Rock on the 21^st of May for my MRI and check up. I am hoping to be cleared to resume all normal activities, but I have come a long way, and many people are impressed at how great I am doing. I am pleased with my recovery, but having “bad” moments have been particularly hard because I so badly wanted to be in that 20% that had no headaches post-op.  This experience has made me stronger, and showed me how much impact one person can make on another life. Throughout this whole process I have had so many people reach out and send me messages of encouragement and love. The unwavering support I have received have made me so grateful.  It has showed me every act of kindness I ever gave small or big never went unnoticed. I have learned that how you treat people now, will affect you later in ways you may never have thought. I have had people tell me that I inspire them and that makes me feel so proud and shows me how important it is to stand by your brothers and sisters in life and live life with a smile and a positive attitude. I will continue to pray and support all of you and I am forever grateful for all the love I have received. I will pay it forward in every way I can.

PS> For everyone who wore purple two days in a row when my surgery was moved, thank you so much. It meant the world to me to see all my loved ones and even strangers all wear purple just to support me. Totally felt the love :)

Roller coster of events lately

The build up to my surgery day was not an easy one. I was so nervous and anxious about putting all this behind me. The morning before my surgery Dr. Kyle called and said he had to cancel the surgery cause he hurt his knee and would not be able to stand. I was really bummed, and down right mad at moments, but if anyone knows what its like to have your body work against you, its me, so I could sympathize. I never know when my Chiari will flare up and keep me from doing the things I want, so it was hard to stay mad. But disappointed that is was lurked around and I was getting really sad.

 A week later Dr. Kyle's knee was worse and he was getting MRI's and facing his own battles so we decided to try to find another surgeon. There were 3 others in NWA and none of them would take my case. They were either to full, not doing decompression's any longer, or gonna be out of town. So after praying about it and a high recommendation we decided to present my case to Dr. Ali Krisht in Little Rock. After 2 days I learned he decided to take my case. I was elated! Finally I had a surgeon (again) and could take a step in the right direction. Yesterday Dr. Krisht called me himself and told me he had a random opening on April 3 and that I would have pre-op appointment on the 26th. Since he is a world renowned surgeon his wait was supposed take till the end of June. So it was a HUGE blessing to get in so soon. I have talked to several people who have had their surgeries done by him and they all raved about how amazing he is, so I am pretty excited.

I have been through so many different emotions lately. I feel like I have emotional whip-lash at the moment. I am so happy to finally have everything set (again) and so thankful for all the prayers that so many people have been sending in my behalf. Feeling all the love from my friends and family, have literally kept me afloat. With you your love and kindness, I don't know where I would be right now. Everyday is a battle for me, not only against my Chiari which has been flaring up a lot the past few days, but emotionally too. I fight to be positive, and to be the kind of person I want to see in the world. I am not perfect and I have certainly had my doubts, and worry's along the way, but I hope to show people that no matter how hard life gets, you can pull through with all the love that is around all of us.

 Its important to me to share this experience with others and  help them to be strong too. We all have our personal battles we are fighting everyday. Sometimes we lose faith, and feel like we can't continue, but we must remember we are never alone. God is always there for us, and he has literally felt our pain and suffering. He has felt the suffering of everyone in the entire world. If he can get through all that and be here for us, then we can get through it too. I hope everyone continues to have faith and support in their battles, and I thank you for all your prayers for me during my fight with Chiari.

update

Lots have happened over the last month.  MRI’s came out good, no tethered cord. Got my surgery finally finalized for March 8, 2012 at 7:30 am at Mercy hospital in Rogers, AR. I am very anxious to get it over with and be on my road to recovery. 

I have been unfortunately having more bad days then good lately. The headaches have been really bad, and the weather has not helped. I also have been having a lot of numbness in my arms and legs and neck pain as well. I really pray that surgery helps relieve some of my symptoms. Unfortunately there is no guarantee that the surgery will help with my symptoms at all.  But it will keep me out of a wheel chair, so either way it is totally worth it.  

February 8^th I got rear-ended by a teenage girl on the phone. I hit my head pretty hard and had to get checked out at the ER. I was very lucky that nothing was found on the CT and the only thing I needed was rest. My amazing boss let me have a couple days to rest and it made such a difference. I am so grateful to have such an amazing family in my life that truly cares for me and my daughter. They have been so kind to me during this time in my life. I know my disorder has been hard on them, but they have never made me feel that way.  I am also grateful to Emery’s “Nana” for watching her those days for me too. 

I thought the accident would be the most drama February would bring but boy was I wrong. Ross found out today that his work just got a huge budget cut from their biggest client. This means that by April his job will most likely not be there. With my surgery coming up my first reaction was an immediate meltdown. Luckily I got over that pretty quick and now I feel better about the situation. I know that God would never give us something we couldn’t handle. Although this is incredibly bad timing, I know this can be a good thing. I just pray the right job comes at the right time.  I also found out that our car from the accident is considered “totaled” so we will also have to add a car payment to our already tight budget. But I know that it will be ok. Worse things have happened and I know the people I love will not let anything happen to us, so for now I am putting faith and hope into the bigger picture that I am not seeing clearly right now. 

Good News! I have sold several Chiari bands! I have had some generous donations and they have truly blessed my life. It is so refreshing to see the gospel in action. I still have lots if you are interested they are $5 and I can mail them to you. Just leave me your info.  Thanks for all the continued prayers.

Back to the tube I go

After my appointment with the neurosurgeon today, I was informed I will be having another 2 MRI's done. This first is because they screwed up my cervical MRI and didn't include were my brain and spine meet. So I shouldn't have to pay for that one since its there bad (thank goodness!). The second MRI is to see if I have tethered cord syndrome. I have many symptoms and when I brought them up, he thought it would be best to have it checked out. "Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column." Some symptoms include weakness in the legs; low back pain; scoliosis; and incontinence. Hopefully I don't have it, but I am glad we are getting it checked out. He didn't set a date for the surgery cause he wants all the MRI's back first. He originally offered my February 9, but I thought that was to soon, and when I declined he decided to wait to schedule it. I was super bummed, cause I am a girl who likes to have a plan!

He also decided to put my on The Infammation-Free Diet. It is very limiting, no sugar,dairy,potatoes, very limited bread options,  going out to eat, no butter, ect. Its suppose to help my body have a smoother surgery and a faster recovery so I will endure, but it won't be fun! I have to be on the diet until I have my surgery and all through my recovery.

I am really ready to get the surgery over with. My Chiari has been really flaring up, and I have been pretty misrable at times. Interesting fact: Weather is a huge contributer to how I feel. I can probably predict a cold front moving in before the weather guy. Big temperture changes, means lots of headaches and dizzy spells for me. Makes me not want to do anything. I have also been having really bad muscle weakness in my legs. In the morning it is hard to even walk. I have to hold on to something or I will fall. I hate always feeling like an old person in the morning, trying to warm my legs up so I can use them. But I hope the surgery makes me all better! I hope after the surgery I can say "wow! I didn't know how bad it really was until I didn't have it!"

Still in good spirits, but with the high cost of all the medical bills, I thought I would sell Chiari Awarness bands for $5 to help fund my surgery and recovery anything I earn over that I will donate for research. I think they should be in sometime in the next couple weeks. If you are interested in buying one please message me! I can mail it if needed. Even with insurance, the medical bills are already piling up, so when I had two very dear friends donate $300 for my surgery and I have never felt so grateful and blessed. I plan to pay it forward someday. Their kindness will forever be in my heart.

To much brain to contain

This week has been a whirlwind of emotions. Yesterday my sweet hubby and daughter got me a great gift, A book called "Conquer Chiari: A Patient's guide to the Chiari Malformation" by Rick Labuda. It is by far the best resource I have found when it comes to understanding my condition. I plan to have some of my family read through it too. It talks a lot about how important awareness is, and it brought up some very interesting facts that helped me understand just how important it is to educate people about Chiari Malformations (CM). In the US approximately 300,000 people suffer from Chiari, whereas 200,000 suffer from MS. What is so weird to me is how virtually everyone has heard of MS and it is effecting less people then CM, but no one has heard of it. Part of what is so scary about CM is the unknown and unfamiliar terms. Although once diagnosed you become very familiar with them, the general public is not. It makes it hard for people to understand. When you hear about someone with Cancer, there is a clear picture of what it is and how it is treated. It makes it easy for people to relate to the hardships and struggles that person is going though. With CM there is no clear picture, and makes it hard to understand what they are going through.

I hope my blog will help people truly understand what life is like for a CM patient. It is not a road I would have chosen for myself, but I look forward to the strength and courage it will give me along the way. Last night I had an absolute breakdown. I was reading through the book and saw a picture of how they position you for surgery and it finally sunk in that it was really happening to me. I was so terrified at that moment that I couldn’t contain myself. I reached out to my Facebook family and got an overwhelming response from people thinking and praying for me. Giving me words of wisdom and courage. It helped so much, to hear people tell me how much they cared for me. Then I got a private message from an old friend who got a hard diagnosis a year and half ago.  It stopped me dead in my tracks of fear and reminded me that no matter how hard of a time you are going though, someone is always dealing with something worse. I am not belittling my hardship, but it helped me see the big picture again. I needed that so badly. I came away from that breakdown with a renewed since of strength and willingness to fight CM. 

There is a beautiful worship song called “His Love” by Jake Rau that has given me peace throughout this experience. The verse that helps me the most reads:

He knows your heart, He knows your name
And when you hurt He’s felt the pain
Forever He will sustain
Until you find in His arms again…
His Love…

You tube the song, it is truly touching. It has really made me thankful for the sacrifice Jesus made for each and every one of us. I know how scared I was, and I can’t imagine taking not only my pain, but the pain of everyone in the world. What a miracle. I am so thankful for my savior and the love and grace he shows me every day. I am so thankful for the chance I have to show people who the love of God can help us through and adversity thrown our way.  I hope to give you all hope that no matter what happens in life, you are never alone. Please subscribe to my blog if you are following, I really like to know who I am talking to, but even if this blog helps one person it is worth it. 

Its official...I am going to have brain surgery

Just got done meeting with the neurosurgeon Dr.Kyle. He was very nice and listened to all my questions. When I first walked into the room he asked me if I was selling something. With a confused look on my face I replied no, that I had a Chiari Malformation. He said I was WAY to young to be seeing a neurosurgeon. I completely agree! 22 years old and I will be having brain surgery. Its sorta surreal. I never imagined I would be here. I am just thankful to be in an area that has the doctors and facilities necessary to offer me the best care possible. He said my herniation was pretty bad, one of the worst he has seen, although he said it could be worse. I will have to get another MRI, this time of my neck and spine. I guess my cerebral tonsils are so far down my neck that he couldn't see all of it on the scan. He said I could wait a couple months to do the surgery, but he seemed to want to do it sooner rather then later since my symptoms list is a mile long and the herniation is so bad.  I knew that surgery was almost a done deal, but somewhere in the back of my head I thought just maybe I wouldn't need it. But now that it is a for sure thing, I am ok with it.

Luckily I will not have to travel for my condition. He will perform the surgery at Mercy. I am lucky to have such a strong support group in my life. This operation is going to take a lot out of me, so I thank you all in advance for the thoughts, prayers, and sacrifices you will make for me in the coming months. I have ordered Chiari awareness buttons for my friends and family to wear and help support me. There is no cure for Chiari Malformations, and many doctors know very little about the subject. My hope is to help increase awareness about this condition. The more people who know about it, the more research will be done to help treat it. So if you want a button, let me know.