All my "gists"

I have finally finished my slew of doctors' appointments and diagnostic tests. I never imagined I'd have so many kinds of doctors to see, especially when this all started by me going in March, to a doctor, to see if I needed more thyroid meds! I truly have seen how God has directed and guided me to this answer to a long list of symptoms that has grown and worsened since I was a kid. I am very blessed to live just 1 hour away from an EXPERT in this unknown disease, one who truly cares about his patients and is so good and experienced in it. I can't but help to feel this is part of the reason Chad and I were guided to take a job here in this area of the United States. Heavenly Father truly is aware of us each individually and our needs.

I didn't realize how "sick" I am. There are many reasons for this. First, the doctor said I am so athletic I compensated quite well for some things, and I've unconsciously adopted some coping techniques for symptoms. Second, symptoms came and went, or got progressively worst slowly, for the most part (though the last two years I felt something was definitely wrong). Third. it was easy to attribute my symptoms to something else (a car accident, pregnancy, scoliosis, or getting old (I thought this is how life is after watching my mother experience many similar things at my age). Dr. Rosner is nice enough to tell me "Your not old!". I'm good at hiding my symptoms from most and pushing through much of it (though the exhausting times much doesn't get done and I lay around a lot). I'm excited to see what symptoms can be resolved. It would be awesome to have one of Dr. Rosner's miracle outcomes, that some patients have, and be left with no symptoms. But I hope at least to rid myself of headaches, pressure in my head, tiredness, insomnia, irritability, pain, dizziness and balance problems. Though there is lots else I'd like to loose like IBS, insulin problems, urology problems, hormones (like adrenal deficiency symptoms), etc. Dr. Rosner said the symptoms he doesn't expect to completely resolve is ringing in the ears and all neck pain. I guess my big fear is my symptoms are not caused by the chiari (which is a possibility). But all the test results point to the fact that symptoms are most likely caused by brain stem compression.

Many assume, rightly, this would cause headaches, but there is so much more it can do and there is not much research for this disease. Many doctors aren't very aware of it either, or they think it either causes no symptoms or only headaches. On a daily basis, the symptoms of chiari are similar to MS, (in fact many are misdiagnosed with this at first). I've also read that my POTS is similar to living with pulmonary disease. From day to day I do not know how I'll feel. I have found myself for a long time not making many commitments because I don't know if I'll be able to do something when it comes to the day of. I have realized some things make symptoms worse, such as weather fronts coming in. But it is hard living not knowing what I will be feeling like when I wake up.

On the worst days I am exhausted, and can't find an ounce of motivation to do much. At times I have a hard time sleeping and get bad insomnia. Then there is headaches that get worse if I laugh, raise my voice, or bend over ("This is the last toy I will pick up!" (cleaning bathrooms are the worst on these days from all the bending over)). I usually have overall pain on bad days too. I can be dizzy and almost faint from just standing up. I get out of breath climbing a flight of stairs. I feel exhausted and used to try and workout despite it (thinking maybe I was just getting out of shape), but I haven't been able to do much of that with exercise intolerance lately. My hip pain this year has been unbearable at times, and since nothing is clearing it up (steroids, rest, chiropractic, therapy, medicines), the doctor thinks it may just be more neurological decline (that's not the word I want but I can't seem to put my finger on the one I want). Some days I bump into everything, drop things, and feel very disconnected from my limbs. It makes for big messes, especially in the kitchen. So I guess if you can imagine a day you awake and feel like you are getting the flu, then it is a good picture of how you can feel overall. Yet there are good days when it is not all that bad, and I wonder if I really am sick (but then another day I just want to lay on a table and have someone cut me open right then and there and do the surgery!). I guess it is easy to understand all this if you realize your biggest nerve is pinched (spinal cord) and everything can be affected.

I have the following doctors...a family doctor (that first diagnosed me...I found him with much study and prayer and now know why), cardiologist, urologist, psychologist, neurosurgeon (cool I have a brain doctor!), along with my former doctors, allergist, chiropractor and OBGYN. Many "gists". I may get to add a physical therapist to it after surgery. I've had lots of weird tests (see previous posts) and got done with the urodynamics test (which is embarrassing and uncomfortable). The psychologist gave the green light on my mental state for the surgery and I was able to get my required second opinion from another neurosurgeon at the beginning of the month (this too was an answer to prayers because many patients spend many months just trying to find a neurosurgeon willing to give and take the time for a second opinion).

So the official update is on Sept 30th I will be undergoing major surgery (brain and spine). We will be praying and fasting as a family on Sunday, Sept 28th, if you would like to join us. The official name of the surgery is laminectomy and decompression. If you are squeamish do not read the following paragraph.

What Dr. Rosner will be doing exactly is cutting a piece of the base of my skull (about quarter size I believe), then opening the duraplasty (a thick membrane surrounding your brain). He will then cut off my tonsills (cerebellum ones, I didn't know there was more than one set either). He says they have not found any function for that part of your brain (helps with flight in birds). Mine will be tricky because they are wrapped around my brain stem. He'll cut a piece of my top vertebrae off (it is shaped like a doughnut) and then scrape the inside of the second vertebra to try and give my spinal cord some more room. He'll finish by sewing in a cow graft (moo, can you say mad cow disease he he), to give more room. He is so knowledgeable, precise and perfectionistic, and we have lots of confidence in him. He has done over 800 surgeries for this condition (many revisions of other doctors' work too).

Estimated hospital stay, barring no complications, is four days. My mother-in law- is flying out to help for a month, which we are grateful for. I hope to be recovered in 3-6 weeks good enough to drive, do light housework, etc. After that I'll just have to be careful to not to over-do it as I finish recovering. There will be ups and downs with the symptoms which can come and go, even new ones. But overall they should decrease (and hopefully disappear) over the course of 1-3 years.

How am I doing? Well considering I have an upcoming surgery I am remarkably at peace and calm. This is only because of Heavenly Father. Chad and I prayed about if this surgery was right and something I should do and both received the same answer and calm reassurance. I'm pretty good about worrying, and have my moments with this, but overall I know it is all okay and I have faith it will be okay, especially since the Lord is leading me all through this. It will be a 1-2 year full recovery, but I am ready to get to work, get better, and get my life back, maybe one even better than I have ever had.

This turned out to be an extremely long post.

All prayers are welcomed!