So I have been meaning to post for a long time now, not sure why I haven’t. I made a commitment to blog about my experiences with Chiari / Syringomyelia and the accompanying decompression surgery and recovery not only to help myself remember but hopefully to help any others who are diagnosed and find themselves as confused as I was. Luckily my wonderful wife filled the void with the background so I will just start with where we are at today.
I had my pre-op appointment this morning. A wonderful benefit (which I didn’t realize at the time) of scheduling it for early in the morning is that you aren’t awake enough to be nervous before you are done. We had to be at Duke in Durham at 8:15 so with traffic to be safe we left Wake Forest around 6:30. We were happy to find that the directions were pretty straight forward and everything was very clearly marked and easy to find. I was also very pleasantly surprised to see how quickly I was moved through the system.
When I arrived they checked me off a list and asked me to fill out some paperwork (pretty standard medical history stuff). I began filling this out and was called up to Admissions to process insurance, verify identity, etc much quicker than expected. After done with Admissions I sat back down and continued the paperwork. Was then called back by the nurse to take vitals (still carrying my paperwork with me). Once done I went back to the waiting room thinking I surely had plenty of time now to complete this paperwork. To my surprise I was almost immediately called back to a room and a nurse came in to brief me on what to expect and answer any questions I had.
Surgery sure has changed since the last time I had to have it. I was told to call a hotline number Monday night to find out when to arrive on Tuesday for my surgery. No food or water after midnight on Monday and I am supposed to use some special antibacterial soap to take a shower both Monday night and Tuesday morning. I am also not supposed to shave. On Tuesday I am supposed to go straight to the 3rd floor (very odd to note that every surgery I have ever had has occurred on the 3rd floor regardless of the state or hospital) to register. Surgery is supposed to begin about an hour and a half after we arrive and is scheduled to last around 3 hours. We will be taken to a waiting room where the anesthesiologist will come talk to us and give me some margarita in an IV until I pass out. My wife will be given an Outback Steakhouse pager (their words not mine) so she can wander around the hospital grazing at the cafe or using the wifi until the pager goes off to notify her the surgery is complete. Then she will wander back to the waiting room where the surgeon will meet her to discuss how the surgery went. I will be taken to the ICU (standard procedure) and she will be able to visit me but not stay overnight. Then I will be moved to a standard (but private) room where she can stay overnight and I am expected to enjoy the hospital’s accommodations for 3 – 5 days.
After this bit of information another nurse came in to take more vitals, discuss my medical history again, and take me down for some blood work. It was explained that there was a possibility of a blood transfusion but they try to avoid it and don’t do one unless your platelet counts get very low. So they do the blood work to see where your platelet counts are at currently to get an idea of what to expect. Since I have high blood pressure they told me it was also standard procedure to have an EKG. After the nurse hooked me up and confirmed my heart was beating and I was indeed alive, I was released back into the wild. It was fortunate that we got there early because the waiting room was jam packed all the way out into the hall when we left but I only ended up spending a little over an hour there.
So here we are, waiting for the day and nervous knowing enough to be dangerous but not enough to really know what to expect. To be honest my biggest fear is verifying I am doing the right thing by having this surgery. I must confess that since my symptoms (aside from the back pain) have not been nearly as bad as many other Chiarians on the support groups I sometimes feel like I am an imposter having this surgery (I can’t think of any way to better state what I’m thinking). But then I remind myself the neurosurgeon said we caught it early and this is more like a preventative car maintenance making sure that the symptoms don’t get any worse and don’t get to the point of doing permanent damage. I have also been blessed to have many friends and indirect contacts in the medical community who have offered to review my reports and MRIs so I have gotten a consistent consensus from multiple unbiased sources. That definitely reassures me that I am doing the right thing so now my only nervousness is pain management. It doesn’t help that the last thing the neurosurgeon told me was “I won’t lie to you, this is probably the easiest / most standard surgery that I perform but also the most painful”. And of course knowing that everybody’s recovery is different makes me nervous because I really won’t know how my body will react until we actually get there. But the nurse reassured me that they would make sure I was comfortable and not to worry because it impedes your bodies ability to heal if you are tense or in pain.
So long story short just keeping my mind busy on other things making sure I am as prepared as possible to be down and out for a month and looking forward to a birthday beach getaway this weekend. Adrianne is doing her best to make sure I have a stress free and relaxing weekend. She has taken care of every last detail even down to driving to the beach because she knows as much as I love the beach I hate driving because finding public parking stresses me out. She rented a beach house for us so this won’t be so much an issues but it should be a very fun relaxing time just to be on the beach hearing the waves crash, smelling the salt in the air and feeling the breeze on my skin. And of course being the foodie that I am it doesn’t hurt any that she has planned dinners each evening of my favorite foods and restaurants (including an evening sitting on the pier over the beach eating seafood and sipping wine).
The fact that I have been so calm so far as the surgery approaches has been very shocking and I am just waiting for the bottom to fall out. Certainly I have to admit it has affected me; with my personality I have a habit of suppressing unpleasant things and not admitting that they are bothering me. I know it has affected me because I have been having trouble sleeping (some nights only getting 2 hours) and when I do sleep I have really bizarre off-the-wall dreams. I also periodically have been known to get very agitated and frustrated over very small things, have mood swings, and just out of the blue feel like crying my eyes out but luckily these periods have only lasted a few minutes and have been pretty few and far between. While I have amazed myself (and others) at how strong I have been so far, I have a feeling I will be an emotional wreck this weekend but she has taken such precautions to make sure I have a relaxing and stress free time and has been so supportive I’m sure everything will be fine and my worry / focus has been more on trying to make sure all of the loose ends are tied up before the surgery. (Did I mention my wife is the best wife in the world?)
So here we are less than a week before the surgery and time feels like it is slipping through my fingers with the surgery approaching at a wreckless pace. I will try to do my best to make updates on here both for myself and potentially others but we shall see … more to come
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