What a week.

Seriously, just when you think things can’t get crazier, the doctors find a way to take it to the next level. In my last update I explained the whole crux of bed availability, but that turned out to be the least of my worries this week. The craziest part is that a procedure that should’ve hospitalized me for one night turned into a five day event. In short, being admitted to the hospital wasn’t enough to ensure that the blood patch was done in a timely manner. I checked in at 8pm Monday and didn’t receive the blood patch until noon on Thursday. And to top it all off, my doctor informed me this week that my case may be the only one like it in the world. The world?! Apparently the combination of a recurring CSF leak (with no known cause), meningocele and Chiari Malformation isn’t a common trio.

I’m sure not everyone wants the whole story, but for those that do, here’s a rundown of how it all happened (for those that don’t, skip down to the bottom to see the final results) …

Monday: I called first thing in the morning, as instructed, to check for a bed. The nurse quickly told me that nothing was available and acted like that would be the end of that. After prompting her about when I might be able to get a bed, she told me to call back at 1pm to check with the daytime charge nurse. I proceeded to call back right when she requested and again was told “no beds.” She said I could call back at 3pm to do one final check, but I would likely have to try again on Tuesday morning. I called again at 3pm and she recommended we try again on Tuesday. Perfect. So just as my mom and I laid on the couch to rest for a bit, the charge nurse called back and said she unexpectedly had a bed open up so I should come up that evening to stake my claim. Long story short, we left right at the beginning of rush hour to get there before dark. We found my mom’s hotel, got her settled in and then grabbed a bite to eat before going to the hospital. It’s so weird to show up at a hospital and tell them that you need to be admitted … especially when your makeup is done, your hair looks (relatively) good and you walk in on your own two feet. Either way, after about an hour of waiting, my bed was ready and the check-in process began. Vitals. Gown. Blood work. Medical history. EKG. Neuro exam. Done.

Tuesday: The nurse came by and delivered the following news, “we’re hoping to get you down for your blood patch today, but they’re currently booked solid, so it’s not looking promising. Hang tight and we’ll do our best to get you down there.” Wonderful … more waiting. And on top of the waiting, I had been told no food/fluid by mouth since midnight so every hour of waiting meant another hour without a meal. By 3pm it was decided that there were too many backups in anesthesiology so I would have to wait until Wednesday to get the blood patch. My mom quickly came to the rescue with ham, cheese and apples and the remainder of the night was spent watching the Royals game on my phone. The nurse came by at one point and told me she was able to get the blood patch scheduled on Wednesday at 11am, which meant I was NPO (no food/fluid) after midnight again.

Wednesday: This day started out so promising, but quickly turned into the day from hell. 11am rolled around and the transport team came up to wheel me down to pre-op. While the blood patch isn’t a surgical procedure, it’s performed by the anesthesiology team so it is done down in the pre-op department. The fellow came in to explain the procedure, using phrases like “the needle is basically like a harpoon” to knock me off my game, but I managed to stay relatively calm. He told me that they had one other blood patch to perform before mine and then they’d be in. My mom had been sitting in the room with me, but they told her she couldn’t stay for the procedure. Knowing that I would be up next, she left to go eat lunch and then told me she’d be waiting in the room when I came back. I waited. And waited. And waited. Finally, the attending anesthesiologist came in and sat down. Not good. She made me explain why I was getting the blood patch and then she said that she wanted to call my doctor to discuss it with him because she’s never performed a blood patch on someone with my condition. When she came back, she told she told me that she wasn’t comfortable performing the procedure since it wasn’t being done under normal circumstances. My understanding from our conversation is that blood patches are usually performed on women who develop severe spinal headaches after an epidural. The doctor explained that they’re usually done “blind” or without any visual guidance. The anesthesiologist starts injecting blood into the spine and it’s up to the patient to let them know when the headache subsides, at which point they stop adding blood. Since I didn’t have a known leak in my spine and blood patches can’t heal leaks in the brain, they couldn’t use the whole “let me know when your headache subsides” method to determine how much blood to inject. Her recommendation was to schedule the blood patch in radiology so that it could be performed under fluoroscopy (an x-ray “movie” that is displayed on a monitor and shows the doctor the motion of a specific body part). I was completely stunned and in disbelief over the fact that I wasn’t going to be getting the blood patch as planned. She said it could take a few hours or possibly a day to get scheduled in radiology so they wheeled me back up to my room while they figured out the scheduling component. There was a big debate about whether or not I could eat, but I told them that if there was any chance that I could get down to radiology later in the day, I didn’t want to eat and ruin my chances. My nurse pulled some strings and was able to get me scheduled at 4pm — right at the end of their daily scheduled procedures. The only catch was that they wanted my nurse to hook up a new IV because my other IV had been in too long to draw blood from it. That should’ve been an easy request, but after 15 hours of no fluids, my veins were not cooperating. After three SUPER painful attempts, they finally got an IV into my left arm. Again, they wheeled me down and I was stationed in a hallway to get ready for the procedure. Long story short, the attending and fellow came over to explain the blood patch, they asked me to explain why I was getting it, we had a very long conversation about why my doctor wanted to try it, the attending radiologist had a 30 minute conversation with my doctor to make sure it really could work and then we all decided that they would do the blood patch. Before wheeling me back, the nurse wanted to test the IV to make sure they could draw blood from it (for the patch). Nothing. Nada. Zilch. She then tried in my original IV—same results. They started tapping my arms to find other options, but nothing was showing up. After another 20 minute discussion, we all agreed that it would be best to send me back upstairs for the night so they could hook me up to fluids and rejuvenate my veins. Oh, and just to kick me while I was down, they informed me that I didn’t actually need to be NPO for this procedure so they told me that I could go ahead and eat as often as I wanted before they rescheduled it (glad I had already fasted for two days). Before they took me back upstairs, the nurse and doctor worked me into Thursday’s schedule and promised me that I would get the blood patch on Thursday. The doctor even said that I could hold him personally accountable if it didn’t happen and that he would do everything in his power to make sure I didn’t get held up again. Wednesday ended with a room upgrade to a window spot, all the food I could eat and my first night of solid sleep since arriving (I finally had a room to myself).

Thursday: By virtue of being allowed to eat/drink, Thursday started out much better. After eating a full breakfast and light lunch, the ICU charge nurse came by to hook me up with a fresh IV. She’s a veteran when it comes to IVs and got it done on the first try (whew!). She then tested to make sure that she could easily draw blood from it and declared to the radiologist that I was flowing like a river. They wheeled me down for the blood patch around noon and the next part was smooth as butter. I had the same nurse from the day before and she talked/comforted/distracted me during the procedure. It was TOTALLY unnerving to hear the attending doctor explaining to the fellow how to angle to the needle and how far to insert it in my spine, but she did her best to keep my focus. After 12cc’s of blood (they were aiming for 10–20, so I was in range), I couldn’t take the pain/pressure so they called it good. I rolled onto my back and was told to stay there and flat for the next 24 hours. The rest of the day was spent figuring out how to eat/drink while laying flat and watching two full seasons of Catastrophe. I didn’t realize just how painful the recovery would be, but laying flat meant that the blood patch wouldn’t really disperse so I had a ton of pressure/pain across my back and down my left leg (nerve pain/pressure). It got worse throughout the night, but I tried to remind myself that I just had to do it for 24 hours. I slept intermittently throughout the night, but it was definitely a struggle.

Friday: By Friday morning the pain was unbearable. I kept moving my legs around to relieve some of the pressure in my back, but the pain was quickly building and nothing relieved it. My MRI was scheduled for 12:20pm, so I tried to use that as my motivation. 4 hours left. 3 hours left. 30 minutes to go. The only part I forgot about was that nothing in a hospital goes as planned. 12:20 came and went and I was still in my room (on my back). I couldn’t sit up until after the MRI, so it didn’t matter that 24 hours had passed. My nurse came in and explained that there were only two MRI machines and both were occupied. They were hoping to get me in next, but I might have to wait a few hours. At that point, I pretty much lost it. The pain was at a 10 and I wasn’t going to be jerked around any longer. I told her that it wasn’t an option for me to wait that long so if someone was going to be “bumped” from the schedule, it wouldn’t be me. I don’t know if my pointedness did the trick or if it was just a coincidence, but about 20 minutes later the transport arrived to wheel me down for my MRI. The MRI took about an hour and they had to stop twice along the way — once to readjust my legs in an effort to help relieve the pain and another time to add contrast. I was so happy to finally be done with this whole nightmare, but my pain had spiked so much that it took another 30 minutes to get it back under control enough to start moving again. I’m so thankful my mom was there to take care of me because I’m not sure anyone else knew what to do. On a side note, my mom had a flight scheduled for 6pm out of Dulles. And, as of 3pm, we were still awaiting discharge from the hospital, which is two hours away from the airport during rush hour. The nurses quickly drew up my discharge papers and just as we were ready to leave, the doctor unexpectedly showed up to deliver the results. Needless to say, we quickly realized that my mom would miss her flight … again. Thank God Southwest Airlines is so flexible because we were able to cancel and re-book her flight on Wednesday, Thursday and Friday without any penalties. She flew out today to give us all an extra day to recover from the past week.

RESULTS: Quick refresher … the Chiari decompression surgery was cancelled because the three doctors couldn’t agree that it was a necessary surgery. My neurologist had a theory that the worsening of my Chiari Malformation was a symptom of my leak and not the cause of it. He requested the blood patch and MRI to prove his theory to the other doctors. While I was in the hospital, my neurologist was the one who came by to check on me everyday and get updates on the circus of craziness. He was equally pissed when he found out the anesthesiologist wouldn’t perform the blood patch and demanded to see my arms after the nurses said they couldn’t find a vein. Before the MRI, I asked him how soon I would know the results and he said he would either call me at the end Friday or on Monday morning, depending on how quickly he could get in touch with my other two doctors. He had a vested interest in the MRI results, so I shouldn’t have been shocked when he appeared in my room less than 30 minutes after the MRI was complete, but it definitely surprised me. He walked in with his head held high and told us that the blood patch did just what he had hoped/expected. It allowed more CSF to flow up my spine and forced the brain stem to rise up just enough to prove that the lack of CSF caused it to drop in the first place. He said that he had already called my neurosurgeon and ENT to let them know the results. They all agreed not to go through with the Chiari Decompression surgery, which means … wait for it … we’re right back to the start. It was a long and tiring road to travel, but the doctors agreed that the Chiari Decompression would likely cause more damage.

The next step is to reschedule the leak repair surgery that was originally planned. I’m hoping to hear from my doctor early next week with a date for surgery. In the meantime, I’ve been instructed to do my best impression of a couch potato and lay around all weekend. The back pain should subside in about a week, so I’m supposed to take it easy until then.

Sorry for such a longwinded recap, but this week was such a rollercoaster that I couldn’t deliver the results without first explaining how I ended up in the hospital for five days. xo, Susan

p.s. sorry for any typos — I’m too tired to proofread right now.

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