Friday, November 20, 2015

New News

I received a call this afternoon from my Vanderbilt neurologist, Dr. T. The first thing he asked was how I thought the Baclofen trial went. I told him, I didn’t see or feel any results. My walking didn’t improve at all and I felt no differently in regards to muscle spasms or any loosening of my muscles. He then told me that that’s basically the same report he got from the nurse practitioner who did the spinal tap injection of the Baclofen, the nurses and the physical therapists. He said that they observed that after it was first administered, I was actually a little worse, and after the 4 hour mark (when it’s supposed to be at its peak performance) I was only just a tiny bit better. There will be no Baclofen pump surgery. I could have told him that already! Haha.

He was baffled that it didn’t work at all. He said that usually the Baclofen helps tremendously, but in my case seemed to have no effect on me. He referred to me as a mystery. I told him, I’m a mystery to myself at this point! Being in a House, M.D. episode may sound fascinating and enthralling, but let me assure you in real life, it's not all that fun!

Dr. T. asked what I wanted to do next. He said that the next step that he could offer me was deep brain stimulation surgery and he asked if I was still interested. I asked him if it is a sure thing – will it allow me to walk unassisted. To this he said he didn’t know. He said that there is no blood test or any other type of test that can tell him without a shadow of a doubt that I have dystonia. He did say that deep brain stimulation does really work for dystonia. With that information and knowing that the Mayo Clinic diagnosed me with dystonia, I’ve decided to go ahead with the steps it takes to have deep brain stimulation. I gave him permission to meet once again with all the neurologists, neurosurgeons, physical therapists, neuropsychologists (or is it psychiatrist? maybe it’s both!) and other medical professionals to discuss my case once again with these new findings. If they all agree that DBS would be the best route for me, then I’d have to make a decision about whether I really want it or not. Dr. T. said I could decline surgery at any stage. That made me feel better. There are several stages to actually getting to the point of surgery, so I have some time to think and pray about things. I know that Gods got this. He'll lead me in the right direction.

The doctor-wide meeting (I really have to find out the official name for these meetings!) happens every first Friday of the month. My case will be presented December 4 – which means I don’t have to wait THAT long!! (Thank you, Jesus). Dr. T. said he would call me with the results of the meeting that day. So the journey continues. It’s been quite a year (well, make that 10 years!) and I have no idea what the future holds, but I know the One who holds my future and because He lives, I can face tomorrow. Again, Gods got this! I need only to be still and wait on Him.

Thank you for following along on my medical mystery, but most importantly, thank you for praying and for caring. It means the world!

Wednesday, November 18, 2015

Vanderbilt Visit Update

What an adventure this last trip to Vanderbilt hospital was for me. It started at 8:45am on Saturday, November 14 when I got a call from Dad. He said that, unfortunately, my mom was just too sick to take me the following day. She had had sinus surgery earlier in the week and thought she would be well enough, but wasn’t. Dad could not take me because of church commitments. So that left me scrambling a little bit to find a ride. I immediately thought of two people to call: my church friend, Kristen and my doctor brother Stanton. But, seeing that it was 8:45am on a Saturday and I knew neither ones sleep patterns, I opted to text them both. I was unsure of Stanton’s work schedule and equally concerned that Kristen may be in Michigan as she’s a HUGE Michigan fan and goes to all their football games. Dad called me back before I got a response from either of them. I had others in mind to call if I didn’t hear back from them, but Dad reminded me not to wait too long ;) I actually heard from Stanton first and he said that he had Sunday off but had to work a swing shift on Monday (He was working from 11am-9pm). I told him my predicament (again over text, although I did try to call him!). Then I heard from Kristen who said she could take me. Stanton called me back within minutes of me hearing from Kristen and I told him he was off the hook.

Kristen is a saint!!!! She pulled through for me on every level and I’ve told her, I’m not sure I can ever repay her for stepping in and doing everything she did for me, unselfishly and without any regard to how it messed with her schedule. Kristen and I are relatively new friends, but we've bonded over our rare diseases. It turns out that Kristen and I are complete opposites of each other in almost every way (she's a political junkie, I'm an entertainment junkie, She loves sports like football, I love sports like figure skating, she's outgoing and I'm an introvert, she loves to travel and even lived overseas, I'm a homebody, she's academic and said she could be a student for life, I was ever so happy to finish college....) however in this instance it completely worked to our advantage!! She is a fabulous friend and I think our differences only make our friendship better. I’m a little jealous of her quick wit and her humor!

On Sunday, November 15 I had to be at Vanderbilt by 2pm CST. Even though Nashville is only two and half hours away they are on central time. I tried my darndest to find out why I had to be there so early, when my test wasn’t until the next day. Two different people (my surgery scheduling coordinator, Lois and Angela, the nurse to the nurse practitioner that would be performing my spinal tap), insisted that I had to be there that early or I might not get a bed. I even asked if I could be there at 6pm or 7pm and they both were adamant that I must be there at 2pm. Kristen and I decided to leave at noon, just in case we ran into problems or traffic. I went to Sunday school and church – scooting out of church a little early. It was about an hour into our drive, when Kristen informs me that she might faint at the sight of a needle and she hates hospitals, so she might have to leave the room during any of the times I might get an IV, blood work or during the spinal tap. KRISTEN!!!!!!!!! Why didn’t you inform me of this before you agreed to take me?!!! I felt SO bad!!! Kristen herself has been through the ringer and has spent a lot of time at Vanderbilt this past year. She’s joked that they should name a wing after her at the hospital. She dubbed this trip “the rare disorders road trip”. I have to say though, that she has been through WAY more than I have!! She has been (and continues to be) a huge blessing in my life.

Kristen got me there right on time! I went to admitting where they checked me in and told me they would call me on my cell when a bed had been assigned to me. Kristen and I perused the gift shop where we found “name” bookmarks. I found “Stephanie” and literally laughed because it said that the personality of people named Stephanie is “an outgoing person who loves to travel.” That’s the complete opposite of me. I’m a homebody and have never even traveled outside of the continental Untied States. Kristen found a “Jesus” name bookmark, which we both thought was funny. After the gift shop we ended up in the cafĂ© at the hospital. We sat around until about 4:30pm and then decided to go back to admitting to make sure I hadn’t been forgotten about. Admitting said that I had been assigned a floor, but they were still waiting on a room to open up. I was going to be on the 6th floor, but I misunderstood her at first and thought she said I wouldn’t get a room until 6pm. I told the lady in admitting the story about me asking if I could come at 6pm or 7pm and was told I had to be there at 2pm. Kristen and I decided just to hang out in admitting. A little while passed and then the admittance lady got a call. I could tell by the look on her face that it wasn’t good news. She hung up and then sheepishly told me, “You could have arrived at 6pm. They have a room for you, but it’s still occupied. Once it’s not occupied, they’ll have to go in and clean it. It looks like you won’t get in a room before 6pm.” I was a little frustrated, but what could I do? It wasn’t her fault. Thankfully, my brother Steven called while Kristen and I were just hanging out in admitting and that was a great distraction. While I was on the phone with him, paramedics brought in a guy on a stretcher (who I assume was being transferred from another hospital). I secretly thought that if he got a room before me, I was going to be mad (even though he was probably much worse off than me)! But as it turned out he was on an entirely different floor/ part of the hospital then I would be on. After I hung up with Steven, I asked the admissions lady if there was any update. She checked and the room had just been signed off on as cleaned and ready for me – yippee!! She called for transport and they came and got me and Kristen and I made our way to the 6th floor. Kristen said after she stepped off the elevator that she felt like she was rocking side to side like after being on a cruise ship and then finally standing on firm ground again. I asked if she needed to sit down or if she was going to faint. She said she was fine. I later found out she felt that way because she was passing all the occupied rooms and seeing needles. Have I said Kristen really hates hospitals?!

So I got a room, but I didn’t have a bed yet. The guy from Transport quickly found a bed and we were finally in a room.

I looked at the clock: 6:38pm (obviously, I took the pic above later when I was a bit more settled in.) It was 20 minutes shy of shift change. My nurse (for those 20 minutes) was Tashya (she later said, “Just ignore the “y”, my parents decided to throw another letter in my name because they could”). She didn’t have any orders or papers on me yet, but she took my vitals. She took my blood pressure and it was 122 over 87. She said that was great, but I thought it was high. I said “isn’t it supposed to be 120 over 80?" And she said that’s what they use as the target, but mine was still excellent. I told her it wasn’t “perfect” and she started laughing. I said (jokingly), “I failed” and she just laughed some more. She was great and I didn’t really want her to leave, but 7pm came and she was off. I got a new nurse: Larry. Larry turned out to be hysterical. Kristen and I were already a little giggly. I have no idea why – a hospital isn’t a place where I thought I’d be laughing hysterically. Maybe it was because Tashya got us laughing or maybe we were overly tired or overly stressed or both or maybe it was just God’s gift to us, but we laughed the entire night. Nurse Larry had fun with us too, at one point sticking his head in saying that there was entirely too much laughing going on in the room, we were too loud and we needed to be quiet. I actually thought he was serious until he burst into a smile and said he was just kidding. Kristen and I just hung out in my hospital room. Before I got a room, I was so tired, but once I had a room, I was bouncing off the walls alert. I blame this on Tashya and Larry. ;) It was around 9pm and Larry told me that they still didn’t have any orders for me yet so I couldn’t eat or drink anything. I felt like I was squatting in a room that wasn’t actually mine! I told Larry, I have a doctor’s name on my wrist band and he said that was all fine and dandy but I didn’t have a doctor in the computer! I got to change into a lovely hospital gown and bright yellow socks. Those socks (which Kristen also pawned a pair of - I joked if that shows up on my hospital bill, she's paying for them!). The bright yellow socks and the bright yellow wristband were indicators that I was a "high fall risk".

In this pic, it looks like my right leg and foot are the problem, but I assure you it's actually the left. ;)

Kristen and I got on Facebook and were bantering back and forth with each other as well as others. I thought Kristen was fine after her little rocking incident earlier. Since the nurses had no orders for me yet, I hadn’t been given an IV, so there were no needles for her to get woozy over. As we were bantering back and forth on Facebook I mentioned this and to it, she took this picture and posted it saying "not two feet from my head":

Sorry Kristen, I stole the above picture from you! How had I completely missed that?! So sorry, Kristen! At 11pm, they finally got my orders. Larry came in to give me an IV and draw blood. Kristen was already lying in the fold out bed/chair (which was an adventure in and of itself!) and I told her not to look!

I told Larry, I’d have to look away as well when he actually put the needle in me, which is what I did. However, I flinched and Larry laughed because all he had done was use an alcohol wipe to clean my arm. He did tell me when he was inserting the needle and I stayed perfectly still. He laughed at that too, because I basically got the whole thing backwards! I didn’t even feel him insert the needle. He drew a smiley face on the tape that held it in place.
Once the needle was in, I was perfectly fine to look at it – Kristen on the other hand, well not so much, but she didn’t faint!!! Then Larry asked me to follow some simple neuro commands: push against his hands with my feet, lift my legs and try not to let him push them down, squeeze his fingers as tightly as I could and look straight ahead. I’m not sure if it was because I was tired, giggly, or what, but on a couple of things, I did the opposite of what he asked. For example, he asked me to look straight ahead (as he was going to look at my eyes). To this, I turned and looked at him. Kristen, Larry and I (once I realized what I had done!) all burst out laughing at this. He also asked me to pull my feet away from him and I ended up pushing them into his hands. He was like, really?! He jokingly said that he was going to fail me on following commands, but thankfully, I passed!

Monday, November 16 started early – like really, really early with a neuro resident coming in and asking me questions to which I can’t remember what she asked or what I answered. The only thing I remember was that she said the spinal tap would be a bedside one, instead of me having to go to radiology. Nurse Larry’s shift was over at 7am and he came to same goodbye. Then Tashya came in and took vitals.

I’m happy to report that I was “less-failing” on my blood pressure as it was now like 121 over 85 or something like that. Still not “perfect” in my book ;) Around 8:30am (I think) physical therapists came in to assess me. Chelsey was the main PT but she had a couple of residents (or is it interns?) with her. She assessed my muscle tone and then it was time to walk. This is part I hate the most! But I made it around the floor and she saw how rigid I was. After she had finished, it was time for the dreaded spinal tap. Veronica (the nurse practitioner), her nurse, Angela and Rea, a nurse practitioner, who was training to work on the neuro floor came in to do the test. They asked Kristen to leave (and I’m positive Kristen was SO happy that they did!). Veronica performed the spinal tap, Rea watched and Angela kept me still. They could not believe how well it went. I was terrified, but for some reason, I stayed completely still (maybe I was paralyzed with fear?!!) Veronica said I had nice wide openings between my vertebrae and I was assured that that was a very good thing. The lidocaine they used to numb the area did sting like they said it would, but the actual spinal tap needle didn’t hurt at all. When they said it was done, I didn’t believe them. Veronica said that I must have an extremely high pain tolerance (this, I credit my Mom for as she also has an incredibly high tolerance for pain!) and Angela said that I was one of the best patients she’s had since she can remember. They both agreed that I probably had the best spinal tap ever. Seriously?!! I was NOT expecting that. They kept saying that I was one of their best patients, which made me feel good! When the whole thing was done, I had to lay flat for an hour. That wasn’t as bad as I thought it was going to be, but I’m sure I drove Kristen batty (you’ll see why in just a little bit). Veronica and Angela had warned me that I’d probably get a spinal headache as most of their female patients did. So I laid flat. Kristen came back in the room. She said that she almost fainted just thinking about me getting a spinal tap and then again when Veronica came in to tell her it was done and I had done great. Kristen had already told me that she had had the worst spinal tap at Vanderbilt ever. Literally, her doctors and nurses told her it was. So, I ribbed her about being the best spinal tap patient Vanderbilt’s ever had. ;) Besides the ribbing, I think what drove Kristen batty the most was the fact that I let my imagination run wild. I was just staring at the white ceiling, so I had to imagine something! Then it came to me and I asked: "What if the toilet on the above floor overflowed and the floor caved in and all the water came down on me while I was just lying there?" She assured me that the bathrooms were probably all lined up, so that each bathroom was in the same place on each floor. So then I asked her, "Well what if the roof caved in sending the patient and the bed on the floor above me right down on me? I’d probably die." Then I asked "What if the floor that I was on fell through and I was sent flying to the 5th floor and landed on a patient and then that patient died. Would I be liable?! Would I be charged with murder?" OK, the murder question, I just thought of, but I did ask her if I'd be liable! Haha, I’ve seriously watched WAY too much House, M.D. and ER episodes. Finally, to shut me up (I’m convinced!), she gave me this picture out of a magazine to look at. It was the oddest thing. It was made out of several pictures and it had to be looked at intensely to find the actual picture. Her ruse worked and I shut up about hospital disasters.

Two hours after I was given the spinal tap, Chelsey and the other PT’s came back and assessed me again. After the assessment, I walked the same path so they could judge it against what I had already shown them. I was discouraged this time though because nothing had changed in the way I felt or the way I walked. Chelsey told me to be patient. ;) She also said that I could get dressed in my regular clothes since the spinal tap was done. Everyone (physical therapists, nurse practitioners, RN’s) kept asking if I had a headache and thankfully I was able to report that no, I didn’t! Kristen and I waited another two hours. I ate lunch (or at least some of it), sat in a chair, got dressed into regular clothes and played on Facebook. I wasn’t feeling any different (for better or worse), but I also knew that I was not the physical therapist, doctor or nurse, so I continued to wait to see if anything changed. Chelsey came back at the 4 hour mark. She assessed again and this time said my muscles were looser. Unfortunately, I didn’t feel like they were and my walking was the same as it ever was.

I was “free” to go after that assessment, but if you’ve ever been in the hospital you know how that goes. I was given my after-care instructions. Tashya had to come in and remove my IV. Then transport came. As I was being transported out of the hospital, the transport guy said that my smile made his whole day. He said that normally no one smiles at him. I'm glad I could make his day. ;) Kristen and I left Vanderbilt around 3:30pm CST. We arrived back in Knoxville around 7:00pm EST. My mom had dinner waiting for us and it was excellent (why does hospital food taste so bad?!). Kristen left to go back home and I filled Mom and Dad in on all the details. Dad drove me to my house around 9pm.

Now, I have to wait for the neurosurgeon’s office to call me with the official reports and what they think is the best course of action. However, I’m resolute in my decision and my course of action. In fact, I don’t think I’ve ever been so sure of a decision when it comes to medical treatment as I am with this one. If they suggest going forward with the Baclofen pump insertion, I’m going to decline. I saw no change whatsoever in how I felt or how I walked. In fact, I was having extreme trouble walking after I got back from Nashville. I am very, very thankful that I was allowed to do the test, but my answer to getting a pump inserted will remain, no. I’m not sure at all what the neurosurgeons will suggest though. At one point I had been told that if the Baclofen worked that that meant I have spacisity and that deep brain stimulation doesn’t really work great on spacisity. If the Baclofen did not work, then that meant it was more likely dystonia and deep brain stimulation could potentially work on that. I have a feeling though that I might have a little of both and I have no idea what can be done in that situation! It’s probably what I’m already doing – taking medication and managing the symptoms the best I can.

I really feel blessed though. Extremely blessed. As I’ve said before, I see things as black and white (also, as I said before, I’m working on this – trying to be OK with things that are just gray.). As nervous and anxious as I was, I was at the same time completely calm when it came to the actual procedure. I told Kristen that the hard part for me would be the decision I’d have to make, no matter what I was told by the doctors. But as things worked out, there was no hard part in coming to my decision. I knew what it was. I’m not wishy-washy on it. I’ve never felt so good about a decision. That’s God. And that’s everyone who was praying for me. Thank you!!!!!

Now, if I’m given the option of deep brain stimulation again, that’ll be another story. I don’t have a resolute answer for that right now. I shouldn’t even go there yet, because I don’t know if it’s an option and why worry or think about something that may not even happen? Of this I know, God was with me these past couple of days, He’s with me now and He will be with me in the future. And now I do what God’s be teaching me all along to do: wait (some more)!

Thursday, November 5, 2015

It's Getting Real

Yesterday I got my "surgery road map" in the mail from Vanderbilt and it's now hit me that this is getting real; this is happening. I'm kind of freaking out. My prayer has been, is and will continue to be that God will just lay this out for me in black and white and that I will know instantly whether I should go forward with getting the Baclofen pump implanted or not. The last time I asked God to give me direction in black and white, He answered by LITERALLY giving me an answer in black and white, so I'm excited to see the way He answers this request!

I'm starting to freak out a little though because this is the first time that something is actually happening to me. I mean, I'm not just going to talk to doctors or discuss a plan of action. I know I've had the psych evaluation and I've had the physical therapy evaluation, but this time the action is actually happening and it may hurt. Haha. Yes, I'm nervous about the spinal tap. I know I shouldn't be, but I am. I've had several people say that it's no big deal, but then I've had several people say it hurts a lot. I've had a couple people tell me to just not look at the needle. So, I guess I'll just have to have my own story and figure it out for myself. The nurse practitioner I saw back in October seemed really surprised that I had lived to 35 and had never had a spinal tap before. I've never been pregnant, so I've never had an epidural and relatively speaking I've been pretty healthy (excluding the not being able to walk part!), so I've never had the need for one.

Anyway, it's 10 days out until I head to Vanderbilt. I have to arrive on Sunday, November 15 because beds at the hospital are at a premium. I don't have the spinal tap until Monday, November 16. I really have no idea what to expect and I think in this case that may be best. This is all uncharted territory for me (but hopefully not for the doctors!). The main goal: for me to walk without assistance. It's as black and white for me as that. If the Baclofen pump works - yay! If not, it's on to the next thing.

I am acutely aware that there are people out there experiencing and going through MUCH worse scenarios than I am. People dealing with cancer or catastrophic illnesses and diseases. Sometimes, I feel really selfish that all I'm dealing with is not being able to walk unassisted. When I whine or complain or feel sorry for myself, I do feel selfish. Some people can't walk at all. Some people can't work. Some people can hardly sit up in bed. I ache for those people. It hurts my heart to hear of all the suffering in the world. And in my tiny corner of the world, I can't walk unassisted and no one knows why. I wasn't born that way. In fact for 25 years (OK, maybe more like 24, since I didn't walk the first year of life), I was able to walk and run and do "normal" stuff and then I hit 25 and things changed and I started tripping, losing my balance and falling. And for 10 years I've been on a journey to figure out how to walk again. November 15 and 16 may or may not change the way I walk and I've got to accept that. But it's hope and hope is something that God ordained for me to have in this journey. Sometimes, I lose sight of that, but it is what I cling to. My God is a big God with a big agenda for me. All I must do is put my hope in Him, stand still and let Him work.