I went to see a neurosurgeon at Cleveland Clinic last Wednesday morning although the trip started Tuesday evening because we drove out the day before so that I wouldn’t have to ride 5 hours in the car, sit for 2 hours or so at a doctor appointment, and get right back in the car and ride 5 hours back all in the same day. Anyways, we got there Tuesday night and I was already in a lot of pain and then we had to walk quite a ways from the cheaper parking lot to the hotel which someone got for us to stay in and was incredibly ritzier than any place we would’ve gotten into. So Wednesday morning my mom attempted for like an hour to coax me out of bed but I wasn’t budging…I had ridden in the car for a long time the day before which was, by the way, following an all-nighter so I was completely content to stay in bed…anyways finally I crawled out of bed at like 7:30am(she started trying to wake me up at 6:30am…I wonder why I didn’t want to get up…because 6:30am only comes once a day).
So we got to Cleveland Clinic and we found someone who was not one of the awesome traffic directors inside the hospital so show us where to go because we were being adventurous that morning I guess. We got there and sat and waited because that’s what you do at doctors’ offices and then we got to see Dr. Di and he was a nice Japanese guy who spoke pretty good American English so communication was way better than when I saw the Chinese doctor last fall…but anyways, a nurse had come in before the doctor did and she had asked me a million and one questions about my life history, my family history, and then at one point she shined this super bright flashlight thing in my eyes even after being informed that I had a headache but she finished up with it quickly so I forgave her and then she had me raise my eyebrows and then I had to make a fish face and as soon as she left I just cracked up it struck me so funny…but I was really glad that they didn’t have to poke me all over asking “does this hurt…does this hurt…does that hurt…does this hurt…etc…”
The doctor came in then and talked to us a little bit about meds and headaches and pain and stuff like that and then he told me that he thinks that my fibromyalgia symptoms are actually the symptoms of Chiari(the only way to tell for sure is to have the surgery) and then advised me to have surgery. He told me that I know best how much I can deal with and how much is too much and then he also told me that I could schedule and if I changed my mind I could cancel it like it was no big deal…and I really liked that I felt no pressure to have surgery and like it was totally up to me. Then he explained how he does the surgery which is endoscopically meaning that there will be an incision approximately 2cm long and through that opening he removes the section of bone to relieve pressure and then he will cut through one layer (there are two layers) of the dura covering on the brain which allows the dura to stretch. He said that procedure usually fixes the problem but if it doesn’t there is another thing he could go back in and do later if the initial procedure doesn’t work. It involves opening the dura and removing the cerebellar tonsils completely and then closing the dura back up…but he has only had to do that 10 times out of 200 and might have another happening soon but it isn’t a very frequent occurrence(only 5-6%). He also said that with this procedure that he does that only 10-11% of patients have had no improvement at all which would be about 20-21 patients(also out of 200) which is also a very low number considering the condition. He said that the open(4in. incision) procedure has higher risks because it’s more invasive so he no longer performs that procedure. Anyways, back to the part about me having surgery…the doctor drew us a picture to make sure that I understood what would be happening to the back of my head and then made sure that he had answered every one of our questions before he left. Then we scheduled me to have surgery May 28th and then we left. On the way home we stopped at Cracker Barrel and had some really awesome food so that was probably the highlight of the trip although the nice hotel that made me feel rich for like 20 minutes was also way up there on my list as well.
I’ve been dealing with fear, terror, and anxiety being overwhelmed by all of them all at once. I don’t even know how to explain these emotions because they’re so strong and powerful. I know without doubt that I would be completely engulfed in a downward spiral circling closer and closer to some kind of awful ruin if I didn’t have my lifeline. What is my lifeline you may ask…it is my relationship with God which although far from perfect is strong enough to pull me back from the edge and then my friends and family all of whom I know would be torn apart if I came to ruin before my time which also pulls me farther back toward safety and then my bestest friends and immediate family who have been holding me up in their prayers constantly and encouraging me as often as they can. And then there’s my mom, who gets a sentence that’s completely her own, she has been praying for me since the day she knew I had a heart beat and has never stopped…the pain I’ve been in has hurt her too and this news has not bode well with her either. My roommate might also get a sentence that’s partially her own…she’s been praying for me a lot I know and since she lives in close contact with has been greatly affected by my hardships as well…she has a strength about her that continues to amaze me and her faith has challenged me so much but the one thing that also amazes me a lot is that she will drop pretty much anything except maybe basketball to help me with whatever I need help with…she has become my laundress, my massage therapist, my chauffeur, my luggage carrier, my court jester, my nurse, and probably also my body guard and yet none of the things that I’ve asked her to do has she ever refused to do…she doesn’t act like it’s weird to help me with anything and I definitely know a lot of people who would think I should just tough it out but there are continuously more and more things that I just can’t do. And then there are my other amazing friends from last year and several new friends from this year who although they aren't all around all the time have continued to cheer me up and encourage me in the moments I needed it most…they have smothered me in their prayers which by the way is never a bad thing…and they have continued to just be here for me and have so lovingly filled in when my roommate isn’t here and they have big shoes to fill but they have done well. I’m laughing now because I know that they’re all so modest that they’ll probably read this and then search me out and beg me to remove parts of this just so they don’t look quite so amazing even though it’s all completely true…they’re still teaching me humility but I’m trying so hard to learn and hopefully I catch on soon because is such a beautiful trait to have. Ok so enough about my amazing friends and family…I’d better stop before they all come and attack me…I’ll keep the remaining compliments to myself for the time being. It is because of my lifeline that I have hope…hope that the surgery will take away most of the pain and that the surgery will go okay and hope that things will continue to get better.
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