I'm a candidate!

No, I'm not running for office. My neurosurgeon (weird to say I have one of those), told me I am a candidate for surgery. I wasn't surprised to hear that based on my symptoms and the results of the tests so far. Beside Chiari and spinal stenosis, the POTS (from the Chiari), I have a problem with my heart and breathing...when my breath rate increases my heart rate doesn't do what it should, which should be increase too. He said it was another very good indication by brain is compressed. I also told him my symptoms are worse when hungry or after a large meal so he tested me and I have insulin resistance. He is just starting to look into this as another possible symptom caused by my head since several other of his patients have this too. He asked if I'd like anything else to add to my list and I said, "No thanks, that's more than plenty to deal with for now".

I realize more and more how blessed I am and how God put me on the path to finding help and giving me two great doctors to get me the help I need and hopefully give me my life back.

Dr. Rosner wanted me to go home, talk it out with Chad and be sure and decide if I would like to do surgery or not. More than anything I have been excited (except for the financial worries of it-since he's out-of-network, but he is amazing and one of the rare experts with this disorder and has done over 800 surgeries). I am excited because I have hope that I may get better (though the goal of surgery is to stop the progression of the symptoms). It has been up and down for me since this diagnosis was first suggested. When days are really bad physically I have gotten very emotional because it just hits me that this is a life-long sentence (Chad doesn't like me to call it that)....there is no "cure", there is very little known about it and very few doctors who know how to deal with it. It hits me that things may not get better, things may get worse. There is a lot of realizing that my ideas of my life or how I've envisioned it, or even of who I envisioned I am or what I can do will probably have to be changed. I love to be active, involved, play sports, etc---what does that mean if that is no longer part of me? Not too long ago, before I knew what all this was, I was thinking about how I have so much inside of me that I want to create. Maybe I will get a chance to do more of this. I have been forced to slow down, especially this last year.

Chad has been unsure of the surgery, worrying I'll be worse than better. We've prayed a lot, talked a lot. Kacie overheard us and gave us her views on answers to prayers, which we're right on....She asked if I felt good about it when I prayed. When I said yes she answered, "if you feel good about it when you pray then that's your answer. It's not like God is going to come down and tell you in person!" Then she said right now I'm laying in bed a lot, I'm always on heating pads or putting ice on my neck and if I don't do surgery it will just be more and more of that. It makes me so sad to hear that, I didn't want my kids to think of their mom in that way. I want to be out joking around, not irritable, playing games outside, and being active. This whole thing is so weird; for instance, for about 5 days I had a really good run with little problems with my symptoms and I was doing projects, playing with them, taking them to the pool and then bam! (can you hear Emeril?), it is awful again. Maybe I did too much, maybe there is nothing much I can do to control when the symptoms act up.

Dr. Rosner showed me on my scans how the bones in the back on my head are pushing in on my cerebellum and how my cerebellum is not lined up and is moving more to one side. He would go in and cut out some of that bone, cut off the tonsils of my cerebellum (bet you didn't know you have other tonsils, he said they have not found any reason for these tonsils either), then sew in a bovine patch (mad cow disease anyone...mooo) to give more room for the brain and then cut off a section of my top vertebrae (it's shaped like a doughnut), and then scrap out bone in the second vertebra to give me some more room in there. Sounds fun huh! On bad days though (like today), I'm all for it---cut me open!

In terms of recovery I would be in the hospital about 4 days. In about 3-6 weeks I can get back to "work" and 3-6 months able to do "manual labor". Full recovery would take 1-3 years. I'm ready to get to work though and get better.

Since Chad and I both now feel right about it they have penciled me in for Sept 9th, which would be pushing it for what I still have to get done (see a urologist for nuerogenic bladder, another great side-effect, and a psychiatrist to see if I'm emotionally ready for such a surgery, and a second opinion, and another appointment with Dr. Rosner pre-surgery). So more realistically it will be Sept 30th. I will let you all know and we'll be doing a family fast (where we fast from food and drink for a day and pray for a special purpose to call upon Heavenly Father for help). For those who'd like to do that with us I'll let you know about that too.

So, hopefully I explained it well in this short and concise post---haha, and it is so uplifting too! Just go ahead and scroll down to my next post about the kids. It is a much lighter fare.