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.