I sent Dr. Liu my entire medical history on Tuesday and his staff booked an appointment for that Friday. They scheduled me for an MRI there at UVA before I saw Dr. Liu. I had plenty of emergency room MRI's and CT's, but none of them compared to the images that they were able to get at UVA.
After getting my MRI, we went to Dr. Liu's office where were were immediately greeted by Dr. Liu's amazing assistant Travis. Dr. Liu had been called into surgery and was running late, so his nurse took my vitals and did my physical exam.
I have to say, UVA is one of the most organized medical centers I've been to. I literally had to do nothing but show up for my appointments and everything was taken care of. My MRI was already uploaded onto the computer in the exam room I was assigned to. They even let me play with the images while I was waiting for Dr. Liu (I was majoring in biology, I love looking at scans - I was highly entertained for a long while).
Once Dr. Liu came in the room, he had already looked at my scans and went straight to the point. He didn't think I had Arnold Chiari Malformation and that he didn't think he could fix my problems. He asked me again, in person, if I could pick one thing for him to fix what would it be? Well..at this point I was so cognitively back logged, that all I wanted to do was think clearly and not feel like my brain was going to explode.
He then told me that he saw some narrowing of the veins in my head and that he would like me to come back for an angiogram and an ICP bolt monitor. I was expecting that it'd be another month before he could do anything for me, and he simply asked if I could just come back next week.
So four days later, we made the trek back to Charlottesville to find out the 'unknown'. Dr. Liu is very conservative and did not want to give me any false hopes or expectations, which I appreciate. Tuesday morning I was in pre-op waiting for my angiogram. Dr. Liu really has a fantastic set of nurses and residents that made me feel extremely comfortable. I had never had anything this serious done before. I've had oral surgeries and such, but no "surgery" surgeries. His team made me feel like we were just going to hang out and not shove a probe up my femoral artery into my brain. Dr. Liu came in to warn me that he might not find anything at all, but he was going to look despite his doubts. His anesthesia nurse, Anita, was fabulous. She gave me a pre-party cocktail and I was good to go.
I was warned that angiograms are extremely uncomfortable and that I would feel them digging around. Nope. I was asleep. The entire time. All I remember was them asking if I was okay and telling me that they were almost done. I wake up in post-op with Dr. Liu there to tell me that he indeed did find something. My transverse sinus was narrowed causing the CSF to not be able to flow properly. He asked me if I wanted to do the ICP bolt test, that since he found something he didn't need to do it. Me, being the nerdy bio lover, opted for the ICP test so that he and his team could get more numbers on us weird EDS-y zebras.
Around noon on Tuesday, I was brought up to the OR to have the bolt monitor placed. At this point, we had already decided that I would get my transverse sinus stented. The plan was to do it that evening if they could get an OR booked. Yet again, I had an amazing anesthesia team who had me nice and schnockered before I even went into the OR room. I woke up in recovery and had no weird side effects of anesthesia (that's a first).
I was brought back into my room so that I could rest before my impending stent placement. At this point, I hadn't eaten any food for over 18 hours and was STARVING. By 6:30 the nurses had all started to come in for shift change and I still had not heard about an OR or my procedure. Dr. Liu himself came up around 8:30pm to check on me and talk to my mom and I about the stent. Since it was a last minute procedure and he had already pulled the OR card for my unicorn horn, he was unable to get one that night for the stent. I had already volunteered to do the stent under sedatives instead of general, but they had no staff left for the procedure.
Dr. Liu warned me that if we did the stent, that it would be months before anyone could touch my neck. He gave me a get out of stent card to give me a chance to have my neck fixed first. I decided to go for the stent. I had been told no by every doctor I'd seen about a cervical fusion, and I was struggling at school and work to just function like a human. The stent was within grabbing the distance, the fusion was still far far away. I had already made up my mind and I wasn't going to be talked out of it.
So the game plan changed. The stent would be placed either in an OR or under sedation on Wednesday. My one and only question was: can I eat? Dr. Liu said I could eat whatever I wanted until midnight. I took that very seriously and sent my mom out on a massive conquest to get me as much carbs and cheese as possible. I don't think I've ever eaten that much, so fast. Thank goodness for Zofran.
I managed to get very little sleep that night as they had to check the ICP every hour. Which consisted of me laying down, sitting up then standing. I finally got a few hours of sleep in the early hours of the morning during shift change. I was told at 8:30am that they would be coming to get me soon to go down for my stent placement.
Once there, my good friend Anita prepared me some early morning cocktails and had me nice and snoozy. The only thing I could feel was a piece of popcorn going off behind my ear...the stent was in. I was feeling pretty proud of myself, only having remembered being out for the entire procedure.
I woke up in the recovery room and was feeling kind of lousy. They sent me back up to my room where I slept for three hours. After an angiogram, you're required to lay still and flat for at least three hours. So when I woke up and saw the time I was very excited that I would finally be allowed to stand up and go to the bathroom.
Then the head nurse came in to take out my unicorn horn. Holy cow did that hurt. Having a bolt screw unscrewed from your skull while you're wide awake. Then she stitched me up and sent in the other nurses to help me get out of bed.
Well, with my luck we go to get me out of my bed only to find that I've been laying in a pool of blood because I blew a clot from the angio site. The nurses all jumped on it and started cleaning and putting pressure on the incision site. They had to hold pressure on the wound for almost an hour. The resident told me I would need to lay flat for yet another 6 hours before being allowed to move, in case I blew the clot again. That put me at 11:30pm when I could have freedom. The incision stopped bleeding much earlier than that, but with my EDS and being on blood thinners they had to be extremely cautious. Once I was able to sit up I was allowed to eat, so then I slept through the night.
The next morning Dr. Liu came in bright and early to tell me that they would have sent me home last night had anyone told him about my little bleeding episode. I guess bleeding out is something you can manage at home. Everything looked good and my numbers were coming out normal. He told me that they were going to discharge me and let me go home.
I was prepped for discharge and the nurses made a makeshift stitches shield so I could shower before the long drive home. Let me tell you..that was one of the most uncomfortable most miserable showers yet. I was determined to be clean and de-hospitalized. Once dressed and packed, I was debriefed on my new med changes and procedures for the stent.
My mom and I decided my new "addition" needed a name...henceforth Billy Bob the Stent.
We headed home and about 5 minutes into the drive I realized it was not fun to be out of the hospital at all. How could I have forgotten to ask for something for nausea for our three hour drive home?
Me being me, decided to sleep. Sleep is my way of hiding. My way of treating pain. It was a miserable drive back, even with dosing in and out. We somehow made it home and I walked myself from the car to the bedroom (probably a bad idea, but I'm me and I do stuff myself).
I think I slept for 8 hours straight. Me, also being me, decided that I didn't need help getting to the bathroom or getting food. Also, not a good idea. By day two, I somehow convinced them to let me go to an appointment with my ankle surgeon. My mom insisted I use a wheelchair, as I was getting injections and just had brain surgery. That was probably way too much, way too soon which sent me into a sleeping beauty slumber as soon as we got home.
By day three, which was halloween, I was already going upstairs to bake cupcakes and ransack the fridge. I do not do this whole sitting still thing. My dad already commented on how much better I looked and sounded. I hadn't really noticed yet because I was still sleeping off all the drugs, but I guess mentally I did feel better. That Sunday I had a major migraine that had me in bed for a day. It was definitely on the top three of worst migraines. I was prepared to do anything to stop another one.
So when I started feeling migraine symptoms on Wednesday, I decided that I already had a metal implant, what was one more? I went to Exposed Temptations and got a daith piercing, which supposedly can help with migraines. I don't know if it was all the adrenaline from a new piercing, or the fact that it actually worked - but it kept that headache from becoming a full blown migraine.
Within two weeks post op, I had returned to work and school. I was feeling mentally better, just not quite there physically. Given the fact that my neck was still unstable and my body had been basically on bed rest for two weeks, I got why I hurt all over.
Already, Billy Bob had stopped the neuropathy in my arms and improved my blood pooling. We don't know if he has really helped, or it's the awesome combination of blood thinners. I was still somewhat symptomatic and having pre-syncope episodes regularly. It came down to another Dr. Abdullah appointment who said that it very well may be the blood thinners. He was very concerned with my continuing symptoms related to my neck and suggested I go to the Chiari Institute in NY. He agreed with Dr. Chehrenama that my neck is unstable and I might possibly have some kind of chiari.
So far I am cognitively feeling much better, the pressure headaches are significantly decreased and my neuropathy has been gone. It's month two post op, so I'm very happy with my decision to get the stent. I'm so lucky to have found Dr. Liu and his team and to finally have found a doctor willing to go out on a ledge for me. The saga continues, but I finally have a piece to my puzzle.
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| Billy Bob, the stent. |
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