Hi all! Sorry for the delayed update, but we have been very busy since making it to NYC!!!! The travel went very smoothly and we got here on time with no delays. Packing was interesting because of how much medical stuff I have to bring with me! I went over the weight limit of 50 pounds for my suitcase so we had to transfer some stuff into another suitcase...oops! I had to bring IV bags and supplies for both before and after the surgery, all 4 of my normal medications and 4 of my normal supplements in their original containers for while I am at the hospital, the medications that I take on an as needed basis (nausea, pain, muscle relaxers, allergy, ect), my neck brace and extra pads for the inside of my neck brace, and various other odds and ends. I can't carry the heavy suitcases, so through the airport my "luggage" was to keep track of my youngest soon-to-be sister-in-law who is 8 :)
We got to the condo we are staying at around 1:30 eastern time after leaving my fiance's parents house at 6 a.m. central time... long day of traveling, but we made it! We got here and the first thing I did was take a nap! Then on Monday we had 3 different appointments at the Chiari Institute. We had to be there at 8 o'clock for a CT scan of my neck. I expected this to take forever because I have only had 1 CT scan before and am used to MRI's. Well I guess I forgot that CT scans are very short so it took only about 3 minutes tops and I was done!
Then we went downstairs and met with a nurse, which was supposed to start at 9:30, but she got us earlier. She was very kind and sweet! She just asked me a bunch of questions about all of my symptoms, medical conditions, and medical history. The one thing that she did that I have never had done before was something called The Beighton Scale. This is a measure of joint hypermobility (how far in the wrong directions that specific joints can go) that is used as a diagnostic criteria for the connective tissue disorder that I have called Ehler's-Danlos Syndrome (EDS). This scale is scored out of 9 points: one point is given for each pinky that bends backwards beyond the "normal" 90 degrees, one point is given for each elbow that hyperextends more than 10 degrees past the neutral straight position, one point is given for each knee that hyperextends more than 10 degrees past the neutral straight position, and the final point is given for being able to place your hands flat on the floor from a standing position without bending your knees. A 4/9 on the scale is considered clinically significant, and along with clinical symptoms is used to make a diagnosis of EDS. I scored an 8/9 on this test. I missed one point because I was not able to put my hands flat on the floor without bending my knees. This is just another confirmation of a diagnosis we already knew.
After we finished with her we had to go back upstairs and get a copy of the scan they had done that morning. The doctor wanted the physical disk so he could load it on his laptop and I wanted the copy to be able to keep for myself. After we got the disk we went back downstairs to meet with Dr. Rekate's medical secretary. She and I have been corresponding for months regarding paperwork and insurance and such. She still needed a few papers to send to my insurance, so while we were waiting for the appointment with the doctor at 10:30 I had to call my primary care provider (PCP). I needed a note from her stating that she wanted me to see a specialist out of town, eve though she did not necessarily say this I knew she would be willing to write a note for me for the insurance. Then the only other thing that my insurance was requesting was a note from Dr. Rekate after he had seen me stating that I needed this operation. So, finally Tuesday afternoon after all of this paperwork was sent to my insurance they finally pre-approved the surgery! It was getting a little nerve wracking there thinking they might not approve it, but we are now all good for Thursday.
After this we had to wait for quite a while to meet Dr. Rekate. He was in a meeting that they had not expected to occur that morning, so my appointment that was supposed to be at 10:30 was pushed back until 11:15. We finally got to meet him and he was incredibly sweet! He talked with us for quite a while and was very interested when I told him I am going to school for speech-language pathology. He was also interested to hear that I have autonomic dysfunction, EDS, and Chiari. He is trying to get a grant to follow these patients after surgery and learn more about how we heal and how these conditions interact. I am excited to be able to speak more with him during my hospital stay about these things!
He first showed me my new scan. It was focused on the place where your neck meets your head. He had drawn a measurement on the scan called the Grabb-Oakes measurement. I can't find a good picture to explain exactly what this is, but basically the very top portion of your spine is called the odontoid process and this is a triangular shaped piece of bone. It is supposed to be straight up and down, but mine is bent backwards and pressing into my brain stem in such a way that the brain stem is actually draped over the top of this odontoid process. The Grabb-Oakes measurement tells you how far backwards the odontoid process is tilted. Anything over 8 is absolutley considered abnormal, and anything over 9 is considered surgical. My measurement is 11mm, so obviously this is what made me a clear candidate for the fusion surgery. The rest of the visit he basically just explained the surgery and said that he feels as if this surgery is going to help me tremendously, but only time will tell just how much
The surgery will take about 6 hours long. They will hopefully not have to use either a rib or hip graft to get more bone, but we will not know that until during the surgery. Dr. Rekate will be working with a spinal specialist named Dr. Insinga, and he will be the one making this decision. They will be fusing from my skull down to my second cervical vertebrae with titanium rods and screws. I should be in the Intensive Care Unit for 1-2 days then in a regular room for between 2-3 more days. My surgery is scheduled for 7:30 in the morning eastern time, so we have to be there at 5:30 in the morning!!!
Then on Tuesday I went to the hospital for my pre-surgical testing. They asked me a bunch of questions about my medical conditions and symptoms, took my vitals, and then did some blood work. This sounds simple enough, but in typical Sara fashion it was a pain in the butt. It took forever to do the blood work because I refuse to get an IV in my arm when I have the port in my chest. They put the port in so that I did not have to get stuck with a needle each time I needed blood work. Well due to some stupid hospital policy only a central line nurse was allowed to use my port. Because of this I had to wait for quite a while, but we got the blood drawn without sticking me with a needle!
At this point the only thing I have to do to get ready for the surgery is to wash my body with a medicated soap tonight and tomorrow morning to make sure all the bacteria on my skin is killed before the operation. I also am not allowed to eat anything after 11 o'clock tonight.
I will have my fiance Joseph update the blog periodically tomorrow so that you guys can stay informed. Thank you all for your prayers and well wishes!
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