Wednesday, October 28, 2009

MRI or meditation machine??

So, at the end of the two weeks I was treated to another myelogram. This time Dr.VH wanted to inject the dye and get me to the scanner ASAP in hopes of better localizing the leak. The plan (funny, that word) was that we would do the myelogram and then Dr. VH would talk to Dr. G and then I would be off for blood patch #2. Bright and early Monday morning there we were....waiting. After about a hour I was finally all prepped and ready to get going. Dr. VH said, "before I stick you I want to run to the CT scanner and make sure that they have it open and ready because we are going to rush you over there." He came back a few minutes later and informed us that the scan had not been pre authorized by insurance and so I didn't even have a requisition number, they couldn't scan, etc. Shocking! Something went wrong, I don't believe it! After another hour of waiting and calls to my PCP (who has to order all this stuff and deal with the pre authorizations) I was back on the table in starting position. This myelogram was the easiest yet. Minimal pain and FAST. Off to the CT scanner.

The results? Still leaking. Better than before but still a lot of leaking. Dr. VH said he needed to go sit and reconstruct some images to try and get a better idea of where it was coming from. I was wheeled to recovery and then wheeled to preop where they started to prep me for the blood patch. IV fluids? check. Consent signed? check. Hospital gown? check. Dr. G ready? check. Then the call came from Dr. VH. His words? "I'm confused." Not something you want to hear the neuroradiologist say. Dr. VH didn't feel like he could tell them where to put the patch and felt like a spine MRI was in order before putting me through any additional procedures. They scheduled me for the MRI the following day.

I have decided, I like the MRI. There is just something about all that noise that sort of hypnotizes me. I get a lot of good praying, day dreaming, and general zen like feelings in that scanner. There wasn't even a hint of anxiety this time.....I'm an old pro! I was in the scanner for about 1 1/2 hours. Seriously, by the time I came out I felt like I had been at a retreat. Refreshed and kinda clear. See, NOTHING can get you in the MRI. It is just you and the machine. In those minutes it is really like the world stops. Ok...well...I digress.

Out of the scanner and back with Dr. VH. The news? UGhhhhhh!! Still doesn't know where the leak is coming from. He knows a few is likely a large tear.....when he can localize it someone will be able to fix it....we are all so frustrated. Now we are on plan D, blood patch from C6-T4 tomorrow, followed by bedrest and a repeat myelogram on Tuesday. After that? Not sure. We are definately on a day by day plan here.

The Other Side, part 3

I'm starting to think this is going to be a million part story. But, I really want to capture this whole event so I can go back to it years from now when things seem bad.

The weekend came and went. Unfortunately, Mere had her embryo transfer on Friday afternoon leaving us both on bed rest for 48 hours. Fortunately, we are blessed with an incredible network of friends and family who stepped up and took care of the girls (and us). It really is amazing how many people come out of the woodwork when the going gets rough. It made us both realize that we are at home here, this is where we belong, these are OUR people.

Monday morning came and we were back at the med center. Before they started a woman came in the room and said, "I need you to sign this paper saying that you will pay for this procedure if your insurance doesn't because we don't have preapproval on this yet." I said, "NO!" and she left. This time, Dr. VH did the stick and it was 100 million times BETTER. In fact, the stick wasn't even painful. When he ran the dye up my spine that hurt, a lot. But, it was fast and I knew it was coming. They got me through the scanner and into recovery. While I was laying there, my phone rang, it was Dr. H's office (the previously mentioned neurologist). The person on the other end was calling to inform me that insurance had approved the CT of the spine but not the brain, blah, blah, blah, on and so forth. Basically, I told her that we would have to deal with it later and that they were repeating this whole mess because Dr. H had messed up in the first place. Luckily, Dr. VH heard about all of this and put an abrupt end to charge...leave her (me) alone. We were thinking that we would be there all day again for multiple scans, but no so. Dr. VH came into the room with the characteristic, "I have good news and bad news. The leak is really big. I can't tell exactly where it is but I think I can get them to the right region." Ohhhh, ok.

After a few phone calls and some more discussion the anethesiology resident showed up in recovery. She was working with Dr. G (anethesiologist) and he was going to do a blood patch. Dr. G and Dr. VH spoke and decided to put the patch in the region of T3-T7. Off to the procedure room we went. Again, I was face down on the fluoro table while Dr. G (well, his resident) guided the needle into my spine. They hit a nerve, I jumped, and they had to pull out and start at a lower position. Once they got the spot and threaded the catheter up my spine, the nurse went to draw blood from my hand. "Are you a hard stick?" she asked. "No," I said. Ok, well, at least I never knew I was a hard stick until that moment. So, I'm on my stomach with a needle in my back and my hand hanging off the table. 3 sticks with an 18 gauge needle later, they got blood. Dr. G slowly put the blood into my spinal column (a blood patch) and told me to tell him when the pressure became pain. After about 18cc's of blood, it became painful. They pulled out the needles and let me sit up, slowly. The difference was amazing. There was still some pain, but NOTHING like what I had been feeling. I could move my neck around without pain and I could sit up without feeling like my head was going to explode. No nausea, no ringing in my ears, yeah!!!! They watched me in recovery for awhile and sent me home with instructions for "taking it easy" for a few days. I went home that night and stuck mostly to the sofa. The next day, I took a shower, a LONG one. By the time I was dressed, the headache and nausea were back, so was the fear. Long story short, I was put back on strict bedrest for 2 weeks.

Thursday, October 22, 2009

The Other side, part 2

The next morning we were up and out, checked in at UAMS at 8am. Of course, when I got there, they had NO idea I was supposed to be there or what to do with me. I was warned that this would be the case since this had all been scheduled late the previous day. Luckily, they let me lay down while they figured it all out and got things moving. There was a lot of waiting and being wheeled from room to room. Again, I couldn't help note how scary this would be to the average patient......big, loud machines (which I have seen before) and a host of confused people.

Eventually, they figured everything out and got me prepped and ready for the myelogram. During a typical myelogram the patient lays face down while the neuroradiologist uses fluoroscopy to guide him in doing a lumbar puncture (spinal tap). Once in the correct space, he/she injects contrast dye into the spinal column, tilts the table up so that you are almost on your head (to move the dye around your spinal cord), and then puts you in the CT scanner to localize where the contrast is leaking out and find the defect. For reasons that are still unclear to all involved, Dr. H (the head of neurology and previously mentioned poor bedside manner physician) wanted to do the "stick." Instead of laying on my stomach and using fluoroscopy guidance, he wanted to do the traditional ("old school") blind stick. I would have really rather have had the neuroradiologist do it, but I didn't feel like I had a choice. No one asked me what I wanted and I certainly didn't assert myself because I didn't want to piss off anyone in charge of my care (i.e. aforementioned neurologist). It had been made clear to me by everyone involved that my case was very rare and Dr. H was the only physician around with any experience involving IIH (idiopathic intracranial hypotension). So, I just shut up and let him do the procedure. Again, I couldn't help but think about how ME, a doctor at U.AMS, didn't feel like I had any say in my healthcare. Imagine how many things are done to patients without their real consent or true knowledge of why/what is happening. Scary and ironic all at the same time. Dr. H comes storming into the room, admonishing Dr. VH because he got lost getting to the procedure room and "wasted his time." He came over to me, put me in the fetal position (which was 100x's more painful then laying on my stomach) and started feeling around my back. First, he numbed the space (bee sting my ass) and then he put the bigger needle in and started to withdraw fluid. All at once I felt hot and nauseated and was fighting the urge to pass out when he moved the needle again and OMG! Talk about pain! Sharp, shooting down my right leg and in my groin. I really thought I was going to be sick because the pain was so overwhelming. Then, they injected the dye. This time I screamed and jumped off of the table. It seemed like a bullet in my spine and an electric shock down both legs. It was sudden, sharp, searing, unexpected, and TERRIBLE. Luckily, Dr. VH took pity on me and essentially took over the procedure. After bringing me nothing but pain, Dr. H left and it was just us (Dr. VH, his nurse, and me). I rolled over and looked up at Dr. VH and he said, "just remember, I'm not the one who stuck you." This made us all laugh a little. Later I was told that the needle has been put in the wrong space and the dye had been injected into the wrong space. This resulted in the lower part of my spinal cord getting "lit up" and was the cause of a lot of pain. I also learned that Dr. H "skewered" my pudendal nerve, which caused considerable leg and groin pain for about a week. If you look up what the pudendal nerve innervates, it might make you squirm a little.

They wheeled me out of the room and into the CT scanner and then off to recovery to wait. The original plan was that they would scan my head and entire spine every 2 hours for 6-8 hours in hopes of finding the leak. Apparently, these leaks can be very tricky and Dr. VH said he had never found the leak with just one scan. After getting settled in recovery, Dr. VH came walking in, "I have good news and bad news." Shit. I knew I wasn't supposed to be seeing him so soon. Besides, didn't we have many more scans to do before the day was over? He continued, "Dr. H stuck you so many times and put so many holes in your dura that I can't see where the the leak is because the contrast dye is leaking through the holes he placed. So, we are going to have to do this all over again on Monday." The good news? "You get to go home." Oh, ok. On bedrest for the weekend and then we get to do it all over again. Of course I said, "next time you do all the sticking, right?"

Everyone kept saying, "aren't you mad??? I'd be furious." Luckily, Dr. VH paused after he said, "I have good news and bad news." In that brief pause, I had enough time to think of all the potential "bad" news that could be on the way. Trust me, doing it again was a picnic compared to the things I was imagining.

I could point out the 10 billion times throughout this encounter that I was thinking of my patients and taking mental notes. When you are the one on the gurney you hear and see everything. The smallest things can make you comfortable and happy vs nervous and scared. The reality? It doesn't take much to tip the scale one way or another. These are the things I have to take home and remember when I am tired, frustrated, or hurried. My role as a physician puts me in a place to have a dramatic impact on a patient (regardless of the healthcare being administered). Just being human, taking time, smiling...these are the things that make the big difference. There are a lot of people that can give the right chemotherapy or order the right tests, that is not what makes the difference. That is not what makes a good doctor. I hope I never forget this.

Monday, October 19, 2009

The Other Side, part 1

This is the first of several posts surrounding our newest adventure. They call it "spontaneous intracranial hypotension." Yep, that is exactly what I said.

How many MRIs, CT scans, invasive procedures, and other things have I ordered in my short career as a doctor? To many to count! Did I ever really understand how terrifying some of these seemingly simple studies are to the patient? Absolutely not. Do I get it now? More, but I also fully realize that I will never be able to understand how scary it would all be from the point of view of someone who knows nothing about medicine. Tack that on top of being at a University Hospital with students, residents, fellows, attendings, and a way of doing things that can only be described as confusing (and I've been in this system for 8 1/2 years). I know I will never REALLY know what it is like to be a patient who naive to all things medical but after the last few weeks I at least have an idea.

The headaches started slowly. They were different than any headache I had ever experienced (I don't usually have a lot of headaches and have no history of migraines, etc) which seemed a little strange. It started on a Monday. They were not that bad, just a little distracting. In describing them to my coworker I said, "it feels like the pressure is off in my head." The headaches were made worse when flexed my neck and they got worse as the day progressed. Interestingly, they went away after laying flat for about 30 minutes. I took I.buprofen, sinus medicine (even though I had no sinus symptoms), and tried to drink a lot of water. I had started a new diet so I thought that might be the culprit. As the week progressed, the headaches became worse. By Sunday, I was in pain. If I stood up, I hurt. If I was laying down, much better. Each day was like a ticking time bomb, I knew I only had so much time before I was going to have a lot of pain. I was barely making it through the day and was going to bed as soon as I hit the door. It was almost like my body was FORCING me to put my head down, it was the ONLY way to make the pain bearable. I had been talking to my PCP through all of this and had one trip to the ER in the middle of it all. Everyone was thinking spinal headaches without the usual preceding trauma (which is rare, but happens). By the following Wed my PCP had an appointment for me with a Neurologist. By the time I made it to his office, the pain was overwhelming. It was searing and felt like lightening through my neck and the back of my head. I was ready to jump off a building, I was hurting. I had been up all morning and was just barely making it by the time I got to the appointment. Thankfully, the woman at the front desk took mercy on me and let me go directly to the exam room and recline. The rest was kind of a blur. The neurologist came in and started examining me. He was rough and had a terrible bedside manner, none of which suprised me since I have known him since medical school (and NEVER liked him). But, he is good (smart) and the head of the department AND he was in my room immediately. Unfortunately, I couldn't quit crying. I was scared and in pain and my medical care was now in the hands of a man I never liked. It was one of those situations where you just can't stop crying, even though you really want to! I wanted to say, "I'm not one of those hysterical crazy women, something is really wrong here!"

After about a hour of questions and physical exam he says, "something is really wrong here. Either you have a tumor or a spinal leak. Are you here alone?" I was there alone because I had gone to work that day and had told Mere to stay home until I found out more, a decision I was regretting. I said, "Yes, but I can have someone here right away." "Your husband?" he asked. "Sure," was all I could manage. Then he said, "we are doing an urgent MRI of your brain. If there is no mass and signs of a leak then we will do a myelogram and then a blood patch or maybe surgery." Me, "how long am I going to be down?" Him, "no matter what this turns out to be, you are down for awhile." At this point in time, I was just to scared to ask anymore questions. Not to mention, I was still in a considerable amount of pain. Of course, my pager had been going off throughout my appointment (because that is just my luck). I called the chief fellow and tried to tell her what was going on and pass off my consults to her (bless her heart, I was crying so hard she could barely understand me).

Off to MRI we went. Now, I know how hard it is to get an urgent MRI. I know the buzz words that you have to use to make things happen so fast. I also know that none of them are good. After they got me settled in the hall on a gurney, it was time to wait. Mere was waiting for my mom to drive from Conway to watch Layne and then she would be there. After about 30 minutes, they moved me to another gurney and then the MRI. Now, I knew that some people got claustrophobic with MRIs and I knew that they were loud. However, I wasn't expecting to have my head put in a brace, earbuds shoved into my ears, and be in a tube with less than an inch around me in any given direction. The tech said as I went in, "it's gonna be loud, whatever you do, don't move. About 1/2 through the scan we are going to pull you out, start and IV, and give you some contrast dye then we will put you back in the scanner." Uhmm...ok. As I started to go into the scanner I could feel my heart speeding up and anxiety coming over me. For a brief moment I didn't think I could do it. Luckily, something (the cozmos, God, whatever) just came over me and I thought, I can relax and do this the easy way or I can totally freak out and delay this process. I shut my eyes and retreated into my own little world. While I was in the machine I couldn't help but wonder if we were going to be dealing with a tumor. It was scary. But, for the time being it was just me and the machine. No one could get to me, talk to me, or call me...I relaxed. I started to think of how patients must feel when they are getting scanned. Big, loud, cold machines and the ability to see all the bad stuff (like cancer) that can be hiding in our bodies. I was thinking of the woman with breast cancer and new onset back pain who gets put through the scanner looking for spinal mets. The young guy with melanoma and new headaches looking for brain mets. How terrified those people must be!

They pulled me out and tried to send me home. Nope, I knew I was supposed to wait to Dr. VH (the neuroradiologist). This was the first of many times that no one really knew where I was supposed to be, luckily, I did, but I fully realize that the average patient would have no clue. Phone calls were made and a few minutes later, he came around the corner. Dr. VH (we had never met before) came up to the gurney and said, "you definately have all the signs of a csf leak and low pressure. Now, we just have to find the leak." Thank God! No tumor. We talked for a few minutes and decided that since it was 4:30 in the afternoon that we would wait until the morning to start the process of finding the leak. I was given the option to be admitted but mostly just wanted to get to my bed, so they discharged me home with instructions to return the next day at 8am.