Fellow chiari Commrad

This week I had the opportunity to meet up with a nurse from my hospital who had Chiari Surgery in 2006 by the same surgeon as I am going to be having surgery with (Her mom also had the surgery in 2004). It was a great opportunity to share stories and get a feeling for what to expect. It was great to have someone who has been through exactly what I have been through. She had chosen to put off her surgery out of fear and uncertainty and that was her greatest regret. Because of putting it off she said she got worse and said that some of her symptoms were irreversible. Her greatest piece of advice to me was to get the surgery done as soon as possible and that it was well worth the difficult recovery.

God is so good! Providing just what we need when we need it. I loved the confirmation this was for me and the encouragement I got from this time I had in this meeting.

Chiari institute Part 4

After what seemed like a life time, I had my appointment at The Chiari Institute! I met with the neurologist again for a follow-up visit. The medicine they tried helped only a little but the side effects were too much for me to deal with. The decision was to send me to the surgeon at the end of October to pursue surgery. Surgery is really the only treatment for Chiari anyway and was what we figured would be the direction we would be going in the long run. The doctors at the Chiari institute wanted to do their due diligence and make sure that what I had was true Chiari, which is a herniation of the brain and a narrowing of the base of the skull. You can have a herniation of the brain for other reasons besides Chiari. So the past few months they have run a series of tests to rule all this out and have come to the conclusion that I have a true Chiari herniation.

Many people would say, well you seem normal, why would you change what is fine? I am not fine. I have some good days but most days I am not fine. I have serious fatigue. I don't sleep through the night and have a difficult time working an 8 or 10 hour day. If I could go out on disability now I would but I can't afford to do so. I often work and come home and do nothing more. I have chronic pain in my joints and muscles. I have headaches that start at the base of my skull that don't compare to your everyday headache. When they are severe, I can't lay down because it feels as though someone is hitting me with bricks. The headaches are caused by a build up of pressure in the brain due to the fluid being blocked and not allowed to flow freely. Some days the pain in my legs are so bad I crawl up my stairs. I have weakness in my legs and arms especially the right side. I often stumble and trip because my leg doesn't work. My memory is effected, my bladder is effected...and i could go on and on and on.

The next step is to meet with the surgeon on Oct 29th. From their they say they may do one more procedure and then schedule surgery. Surgery is the process of opening up the back of the skull and the brain to release the pressure on the brain and take pressure off the nerves. It is much more detailed than this and is a 9 hour surgery and a long recovery. I am trusting the Lord to provide for the finances and the timing of every detail of this surgery. Please pray for the doctors and their hands as they do such a delicate surgery. Thank you to all who have sent me notes of love and encouragement through this time. I feel so blessed even in a time of difficult challenge. I truly can say I have such an incredible peace about the whole thing. It is a peace that passes all understanding...one that could only come from God.

"The Lord is my Shepherd I shall not Want. He makes me lie down in green pastures, He leads me besides quiet waters, He restores my soul. He guides my paths of righteousness for His names sake." Psalm 23

Thoughts....

With my appointment at the Chiari institute being less than a week away now, I have a lot on my mind. I feel a bit of apprehension at the thought of this upcoming appointment. The blessing of having Chiari malformation vs Multiple Sclerosis is the fact that chiari is fixable and MS is not. However, there is a sense of nervousness as I realize that these doctors have the final decision in there hands. Part of my nerves come from a worry that they may delay the decision again which I am not sure I could take. However, I guess I would rather that instead of them saying no.

After taking a bad fall this week because I am having problems with my right leg not always listening to what my mind tells it to do, I am annoyed by the frustrating and increasing symptoms. However, even though I want to have the surgery and therefore the possibility of relief I sense God is calling me to a difficult decision. I feel as though He is not preparing me for a no or a yes but to come to a place where I am willing to accept whatever happens. I don't feel this is a place of giving up really but in reality a surrendering to God and His will for my life. I am not giving up the fight by any means because either way I will be in a fight. Either a fight to maintain as normal a life as I can with the symptoms I have or a fight to recover from a major surgery. Either way I am in for a fight but that fight becomes that much easier when it is one I am fighting with God.

I am a very independent person and for so long I thought "I don't need any ones help, I can do it myself." But that attitude doesn't help in the long run. I have been learning to surrender things to God and trust in His will for my life. I have found that the road is much smoother that way. This situation is no different and as I can fully trust God with this I will have the peace to deal with whatever comes! I continue to pray for healing, and if necessary for the surgery that can bring healing. But I am learning to rest the situation in God's hands and trust His will for me and His plan.

"My grace is sufficient for you, for My strength is made perfect in weakness. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Corinthians 12:9-10

More drama

Today was a beautiful 80 degree day and I made plans to drive to the shore and meet my friend Carmen for a nice day on the beach. About 15 minutes away on Hwy 33 I was driving and pulled over immediately when a young boy who tried to cross the highway was hit by a car at 45 or 50mph. The boy was in critical condition. Myself and a medic cared for the boy while we waited for police and medics to arrive. When they arrived I helped them load the boy onto the board and breathed for him while they secured him to the board. The young man was not responsive and had a very faint pulse. He was bleeding from the head and probably dealing with many broken bones. By God's grace he was hit 2 blocks away from a major trauma hospital. Many areas you would have to be transported a ways just to get to a hospital that could care for such injuries. Tonight, I am saddened by what I saw but praying that God has taken care of him and given strength to his family. I also pray for the driver who must be traumatized by the entire situation.

Please pray for this young man and his family. I may never know the outcome till I reach heaven but none the less I know that God hears our prayers!

Chiari Institute part 3

I am a week and a half away from my next appointment at the Chiari institute. In the mean time I have two more tests to finish and then really hoping for a final decision at this appointment. Meds have not worked and I am ready to finally put this issue to rest if at all possible. This time last year I was training for a marathon and now there are days I am crawling up my stairs to my second floor apartment. God has been faithful on a daily basis giving me the strength to get through each day and to maintain working. I look forward to seeing his continual provisions in this area of my life.