Doctor Updates

Trying to get everything scheduled the weeks between Christmas and New Year's has proven to be a challenge. I do have some appointments in the works though!

January 8th - Tilt Table Test to rule out POTS which is fairly common in people that have Chiari I guess

January 14th - Dr. Di in Cleveland - may have to re-schedule this one once I speak with Dr. Sekula's office - would love to combine these two visits as they are only 2 hours away from each other

January 24th - Dr. Sullivan in Ann Arbor - don't have high hopes for him but will see what he says

Films sent to Dr. Heffez in WI, waiting on a call to see if he will see me (he won't unless I am a surgical candidate which we believe I am)

Waiting on a call from Dr. Sekula's office to schedule my appointment

In an ideal world, I will have all this initial stuff done by the end of January. I am trying to plan a mini-vacation for my family and am stuck in limbo until I have everything scheduled. Our thought process is to de-stress and just hang with the kiddos before surgery. We have no idea how the recovery will be and figured as a family, we'd go into it on a high note. We are thinking of doing a waterpark, not too far from the house - maybe an hour away and being gone for 3 days, 2 nights. Plus this will give us a dry run of our plans for house/dog sitting while we are potentially out of state for surgery. Not sure how the Danes will do, they have some Mama issues to say the least!

As for me, today is a good day. Did wayyy too much two days ago and paid for it dearly yesterday. I had the worst headache ALL day and finally woke up pain free this morning. Taking it easy for the most part today. Will take the doggies and kiddos on a trail walk and wear them all out - that's the hope anyways!

God and Great Danes

Another few days of emotional roller coasters, seems to be my new norm these days. Two nights ago was one of the darkest I have had since I got diagnosed. I wrote out this big long blog, complaining basically. By the end of it, I was reading the book of Job and felt really silly for complaining. Hence the fact that it isn't posted. I had reached a breaking point and basically said God - I'm done, I can't do this anymore. He heard my cry, as He always does. He gave me much needed rest, in the comfort of His words, His truth, His gifts and His people.

Woke up yesterday, after only a few hours sleep, again, my new normal thanks to insomnia. The day was just - different. Filled with good news, I was I high on life and seeing how God makes a way and takes the reigns when I need Him to. Got some things accomplished, spent time with some friends, led a normal day and ended on a high note - I SLEPT! At night, like normal people do. In the arms of the most amazing man I have ever met, I rested - body, mind and soul.

So where do the Danes fit in? See - I know without a doubt that my Danes are a gift to me. It may seem silly, but my dogs bring me such a pure, innocent joy and comfort, only God could know I needed that breed and send me the perfect doggies! Great Danes have this thing they do - they LEAN. They are a needy dog, humans are more than just a food source to a Dane - humans are their world. When they need contact or to connect, they walk over and lean on you. It is hard to ignore a well over 100 pound dog leaning on you. When they lean on me, it makes me stop, if only for a moment and enjoy that feeling. I lean back and somehow I thought of how I needed to do some leaning of my own the other night. Leaning on the only one who can make things right, the only one who really matters - my Lord! So - two nights ago, I was a Great Dane - leaning hard on Jesus and you know what? He leans back, harder than I can and it feels good.

God is good, all the time. When I don't see Him - he's there, waiting for me to look harder, teaching me daily how to lean on Him.

Amazing news!

I have 3-4 Neuro Docs I want opinions from. I am not taking chances here, sadly the failure rate for the surgery I need is 20-30% so a skilled surgeon is a MUST! I called my insurance today and got the most amazing news. All of the Docs I want to get opinions from are IN network, meaning I pay NOTHING and my insurance will cover as many opinions as I want. WAHOOO!!!

So - plan of attack - sending out my MRI and some forms to WI and they will call me with an appointment next week. Waiting on a call from a Doc in PA and one here in MI (though I doubt he is experienced enough to make my cut) and already have an appointment with a Doc in OH. Hoping to have a decision made within the next month. With a move happening within 6 months, I need to get this ball rolling so I can not be a useless lump come moving day.

On a seriously personal note - I am honestly tired of this roller coaster of emotions. One moment I am so upset I am afraid I will lose it, next moment I am so up I can see a future for myself. I wish my mind would just pick one. It reminds me of the hormones of being pregnant. No I am not pregnant - tubes tied after my last daughter. Just frustrating to be so up and down all the time. I guess I should just be glad I have the up moments and not complain.

So many decisions

My head just hurts, so many decisions to make. I am working on not worrying, generally an issue for me. Kinda hard NOT to, given the fact that I am facing brain surgery for a rare condition and research and studies just arn't there yet to make a truly informed decision. When people are usually faced with yucky medical stuff like major surgery - Doctors have standard protocols and studies to give you facts and guesstimates as to outcome. Not so with Chiari. I do believe without a doubt God has my back on this one. That doesn't mean I can just sit back and He does all the work does it?

So what Doctors do I get opinions from? Again the whole rare thing comes into play. Experience is crucial so finding a Dr. that has enough experience is top of my list. I have researched and researched and read and read and am still confused. I do have my first appointment set up with an interesting Doctor at the Cleveland Clinic. Dr. Di does a minimally invasive procedure, less chances for complications is good until I read less chances of long term relief tends to go with that. My Chiari is small compared to many, my symptoms not as severe as so many people I have read about. I have also read so many stories where the surgery doesn't work and has to be re-done or symptoms return and again you face surgery. Where do I hedge my bets as it seems this is the game I play?

Just figuring out travel is more complicated that it needs to be. The Dr's I am looking at are in Ohio and PA right now - bad places to drive to in winter. I *HATE* driving in the snow and with my lower back problems - long periods in the car HURT! So I am in the process of finding out the best way to get to even get an opinion, yet alone surgery once I decide on the Dr. Hubby can't go with me, we need him to save his time off for the actual surgery and recovery so my son Eric will be my travel companion. Flying isn't a good option since the pressure changes hurt my head and it is super expensive. Driving isn't a good option - 6 hours one way for me won't work. Bus? Train? Both have potential until I realize I have to rent a car to get to the Dr.'s. I give up for tonight. Prayers for guidance are needed without a doubt.

CHRISTmas miracles

Christmas has always been my favorite time of year. I am a sap at this time of year, this year even more so. I was afraid for this Christmas honestly. Afraid I would be sad. The opposite happened.I had a personal issue to deal with - this being my first major holiday without my oldest son living at home and as if that wasn't enough - I was dealing with this stupid head thing. Between traveling to specialists - money will be tight so the budget was lower than we had hoped for but it didn't matter to me. I saw things differently this year. Beginning the night before Christmas Eve was when it really started to hit me.

Insomnia is and has been one of my symptoms for a while now and adding steroids in the mix for my back makes it worse. So there I sat, alone in the quiet - just me and my God. Wow the emotion that began to pour out of me. Not self pity, sadness or regret or even fear but AWE! Pure awe that with all that is going on with my body, He is busy making peace in my heart. He showed me things that night and I am so grateful!

I am a woman blessed with more than she deserves and more than I ever thought possible. If you knew me before I knew Him - this is clear I would hope. He has and is altering who I am and it brings me to tears at the work He has done. It has been a hard journey for me but one that is so worth the ride! The world and my own life choices had hardened my heart but I see the layers being pulled back. I see the walls being torn down.

All day Christmas Eve, I watched my family with different eyes. They all seemed different when in reality it is me who was different. As I type, tears well up at these gifts I have called my family.

So I will introduce you to them and publicly thank God for the gift that they are to me.

My husband Dave is my best friend. He is more than I could have ever imagined in a husband. In him, I see a glimpse of Christ on earth. He leads our house with Love and is the first person who really saw ME, ever. He saw my broken heart and sought to make it new. With Jesus' help - it is a task that bears fruit. Thank you God for this amazing man!

My eldest son Daniel is my silent warrior. At 18, he is spreading his wings and finding his way. The strong silent type, who in reality has a soft heart any woman will be lucky to have. God has a call on that man's life that is so strong - I just pray I live to see it come to fruition. Like all oldest children, he bears the weight of many. If I could have one thing from Daniel, it would be that when he saw me looking at him, he actually saw how I see him. Daniel is the kind of son who sees feelings. Brave and loyal. Thank you God for all Daniel has taught me, watch over him and wrap him in your arms now that he is too old for me to do it.

My next eldest son is Eric, my goofy, sweet 17 year old. Also with a heart of gold, Eric has become my friend. Eric will bend over backwards for people and has the most positive outlook I have ever seen in an adult, yet alone a teenager. His innocence is refreshing and his smile is contagious. Eric marches to the beat of his own drum and I like it's rhythm! Thank you God for the gift that is Eric, guide him in the direction YOU want him to go in.

Justin is next in line in this crazy family. At 13, Justin is still different, always has been. An old soul, a goofy, musical kid who has the most even temperament I have ever seen. Things roll off Justin's back and he takes life as it is and makes the best out of whatever situation he is in. Even the typical crud that newly emerging teens go through don't knock this kid down. Thank you God for showing me not to take life so serous through Justin and please continue developing him to be the man you have intended him to be.

Joshua, my little wild man. The spitting physical image of his Dad yet I see so much of me in him. At 11, tweenage-hood has hit but it is taking an interesting turn in this young man. A soft side is developing underneath the wild, rugged football player. An interesting mix of fearless boy with brave man used to scare me but now I see this sensitive side. Another child who can see feelings is in our house. Thank you God for showing Joshua being a man doesn't mean just being tough, leading with the heart is how Jesus did it and I see Joshua learning that.

Carolyn - my first born daughter. My long awaited bundle of pink joy is now 9 and the baby years are gone. I am not saddened or frightened by this as I once thought I would be. Not being a girlie-girl - I wondered how I would handle this girl who owns more shoes than I do and came out wearing heels when I can't even walk in them. In her, I see the makings of a devoted woman of God. Her concern for others, often to the extent of self-sacrifice is so pure to watch. Far down the list of birth order, she bears many of the same weights as Daniel. Her concern for her younger sister runs deep, even though they are like night and day. Thank you God for that sweet smile, the feminine side I get to nurture even though I don't understand it and for the fact that I prayed for a daughter to take to the mall and you blessed me with just that!

Catherine - our Punky-Monkey. The baby, at 7, isn't a baby anymore either. In her, I see so much of me. Strong willed and her own person, a leader not a follower. A giver at heart, a fearless child who also has her own rhythm - it's loud and wild but it's so sweet at the same time. Her heart is so small but so soft at times, I can only imagine the plans you have for her! Thank you God for this little girl - she rounds out my family and grounds her sister.

And that's just the people in my family. One day I must describe my awesome fur-babies - my Great Danes!

See? I am blessed. Yeah I have to face this stupid head thing and travel down roads I don't want to but if that journey helps me see things like I saw yesterday, sitting in church, surrounded by people who were there when I got Saved, looking at my family and seeing that the stupid stuff is just that - stupid. It's NOT all about me, not even close. The spirit is willing but the flesh is weak so I pour out my soul, knowing I will need to re-read this and remember.

Where to even begin?

My story is so short time wise but there is so much to say - I must break this down into several posts. It has been only 4 weeks since I heard the word Chiari and it seems like it was yesterday and at the same time, so much has happened so fast - it seems to be such a long journey. So - I will start with the facts along with a peek into what the point of this blog is anyway.

When I initially got my diagnosis, I was so scared. I read how rare it was, never heard of this strange thing and was just plain creeped out knowing my brain was in my spinal canal - ok only a tiny part but still. I found a few blogs with personal stories and I read and read and read more. This gave me a sense of knowing the beast I am facing.

This being so rare, information isn't super easy to track down and my hope and prayer is that someone headed down this nasty journey will find comfort in my experiences. I know how much it helped me to know I wasn't alone in my symptoms, my feelings, my fears and my total lack of understanding of my condition.

I also write in hopes of healing, processing the work God is doing in my heart as He prepares me to deal with my head. My condition is a nasty one but not as nasty as my heart, it needs more work and I know God will use this to heal my heart more and to grow me more into the woman of God he needs me to be.

The facts - the bottom part of my brain has decided to head south 7MM into my spinal canal. This has caused a severe restriction of the normal flow of cerbral spinal fluid in the back of my brain/head. I also have a "cyst" of spinal fluid called a syringomyelia. As this syrinx grows, it causes permanent damage to your spinal cord.

Cure = NONE

Treatment = More than likely a pretty major surgery, will know more when I meet with the Neurosurgeons. So far I have one appointment in Cleveland on January 14th. This is a rare disorder and finding someone experienced is crucial. Hoping to end up with three consults before we decide which Doctor to trust with my brain.