Catching Up and Looking Forward

While it’s still December, I decided to update this blog one more time for 2015. :) I hope everyone had a wonderful Christmas. I know I did!

On December 23 I met with my neurologist here in Knoxville. It was only my second time meeting with him, but I was reassured that God (again!) led me to the perfect neurologist for me. Thank you, Jesus! I caught Dr. L. up on the happenings that have been going on in the past six months since I last saw him. He, of course, has been kept up-to-date by the doctors at Vanderbilt as well. I told him that I am equally ecstatic and terrified about the prospect of DBS. He said that’s to be expected. He told me that he’s had one previous dystonia patient that he referred to Vanderbilt for DBS and she has had a wonderful outcome. She, like me, had it affect one side of her body and mostly in her leg. This was of huge encouragement to me! Also of encouragement to me, was the fact that he gave my neurosurgeon a glowing review and high praise. But, he also reminded me that in dystonia patients the results of DBS aren’t immediate as in patients with Parkinson’s. Another reminder he gave: the device won’t even be turned on until about 6 weeks after the surgery. To this, he saw my impatient side. ;) Why can’t everything be done fast and instantly?!! But I told him, I’ve been waiting 10 years, I guess 6 weeks wouldn’t be that bad - but that’s still to be determined! ;)

Then, on Christmas Eve, I got an early Christmas present of sorts. My Vanderbilt appointment reminder and a mini biography of my neurosurgeon came in the mail. The letter literally began, “Congratulations…” I’m finding myself teetering between being excited and trying not to get my hopes up too high. I’ve been here before – thinking that a surgery would allow me to walk without assistance – only to have it not work. So, I’m really trying to be realistic about things, but at the same time I dream big.

However big I dream (and I do dream big!!), I must take one step at a time and January 7 is the next step. That’s when I meet with the neurosurgeon at Vanderbilt. According to the appointment reminder it’ll “involve a comprehensive overview of the DBS hardware and surgical procedure as well as a discussion about risks and post-operative expectations.” Please pray that everything goes well. I can still refuse the surgery at this point. I'm scared that I'll be scared enough by what he tells me that I will refuse it, but, as is becoming my motto in this process, I know that God's got this and nothing will happen that He hasn't already deemed to be.

I know I’ve been given a gift in being deemed a surgical candidate for DBS, but there is still anxiety about it. In my mind though, I can’t NOT do this. As I told Dr. L. I have to try it. If it doesn’t work, well, then, I’ll know I’ve done all that I can do. If I don’t do it, I’ll always have a lingering thought of “what if”. So, yes, I’m fearful, but I think my determination and hopefulness outweigh whatever fearfulness I have. Sometimes you have to do things you’re fearful of so that The Lord’s will is done and His works can be shown.

In case I don’t update again until January 7 or after, I hope everyone has a blessed New Year’s celebration. I, for one, can’t wait to see what 2016 brings!

Two Posts in Two Days

Your eyes are not deceiving you - this is a second post from me in as many days. This post is because I got a call from Vanderbilt today and I have an appointment set up for January 7 at 3:15pm with my neurosurgeon! If I had known yesterday that Vanderbilt would be calling me today, I would have held off on yesterday's post! Oh well - such is life!!

I also confirmed that there would be three procedures/surgeries involved. Two of them are outpatient and one is an overnight stay:

Stage 1 - MRI with bone markers (outpatient)

Stage 2 - awake implantation of DBS electrodes (inpatient)

Stage 3 - implantation of battery pack (outpatient)

I found all the reading material that had been sent to me in the very beginning and have been going over it again. I'm not sure yet if I'm scaring myself or just trying to be prepared for things. :)

Thank you for all the prayers!! Continued prayers for insurance approval of everything and complete success of the surgeries are very much appreciated. This is an adventure I never thought I'd be on, but in every step I'm reminded that God's got this!!

Today

Today I was supposed to have had my post Baclofen pump surgery follow-up. But I didn't have the surgery, so there's no need for the follow-up and I am very happy about that. I became more and more skeptical of the surgery once I found out that Baclofen is really for pain management and I would have to have the pump refilled every 3-6 months (depending on the size of the pump that I had inserted.) That would mean trips back to Vanderbilt that often. I'm very happy that it turned out it wouldn't have worked any way. I really have no pain whatsoever, unless of course, I fall or run into things. :) So, I bailed on Kristen who did have a follow-up with her surgeon and doctors three months out from her surgery. Kristen and I have really bonded over rare disorders and road trips. OK, so we've only been on one road trip together, but it's one I'll never forget - that's for sure!!!

Now, I'm waiting on insurance approval for DBS (deep brain stimulation). Please pray that EVERY step and procedure would be covered. There are actually 3 surgeries involved with DBS. Yes, I know. I HATE that part of it, but by golly if it allows me to walk assistance free, I'll do it! I've heard from the doctors that some insurance companies only cover part of the procedures and it can take up to 90 days or more to get approved by them. I'm hoping and praying that mine will be a lot shorter. I know lots of people are praying for me - so let God's light shine down and may my insurance approval come swift and may it be a FULL approval.

As for the actual deep brain stimulation surgery - I'm terrified, excited and hopeful all in one. Like I mentioned above, there are 3 components/surgeries involved. The below is a description I copied straight from the NIH web-site: National Institutes of Health

The DBS system consists of three parts:
•A thin, insulated wire called a lead, or electrode that is placed into the brain
•The neurostimulator, which puts out the electric current. The stimulator is similar to a heart pacemaker. It is usually placed under the skin near the collarbone, but may be placed elsewhere in the body
•Another thin, insulated wire called an extension that connects the lead to the neurostimulator.

Surgery is done to place each part of the neurostimulator system. In adults, surgery takes place in two stages (two separate surgeries).

Stage 1 is usually done under local anesthesia, meaning you are awake, but pain-free. (In children, general anesthesia is given.)
•Your head is placed in a special frame using screws to keep it still during the procedure. Numbing medicine is applied where the screws contact the scalp. Sometimes, the procedure is done in the MRI machine and a frame is not used around your head.
•Numbing medicine is applied to your scalp at the site where the surgeon drills a small opening in the skull and places the lead into a specific area of the brain.
•If both sides of your brain are being treated, the surgeon makes an opening on each side of the skull, and two leads are inserted.
•Electrical impulses may need to be sent through the lead to make sure it is connected to the area of the brain responsible for your symptoms.

Stage 2 is done under general anesthesia, meaning you are asleep and pain-free. The timing of this stage of surgery depends on where in the brain the stimulator will be placed.
•The surgeon makes a small opening (incision), usually just below the collarbone and implants the neurostimulator. (Sometimes it is placed under the skin in the lower chest or belly area.)
•The extension wire is tunneled under the skin of the head, neck, and shoulder and connected to the neurostimulator.
•The incision is closed. The device and wires cannot be seen outside the body.

Once connected, electrical pulses travel from the neurostimulator, along the extension wire, to the lead, and into the brain. These tiny pulses interfere with and block the electrical signals that cause symptoms of certain diseases.

As you can see, the above information says that it's only two surgeries, but I've been told Vanderbilt would do three. This may change of course, but as it stands right now, there would be 1 surgery to place the head frame and wires, 1 surgery to place the neurostimulator, 1 surgery to connect all the wires and turn everything on. I, of course, may be mistaken, as I'm not a neurosurgeon, but this is what I believe to be true at this moment. :)

It's a lot to take in and absorb, but I'm trusting the Lord that everything will work for His glory and in His timing. I'm excited to think what this may bring, but I'm also realistic. I know it won't cure my dystonia, but to be able to walk assistance free - I would count it as a miracle from God. There wouldn't be a day that went by that I would not tell someone of the miracle that took place. But, even if this does not lead to the miracle of me walking assistance free, I'll still count it as a blessing. God's consistently and constantly showing me His grace, His mercy and His miracles.

An Answer

I got the call from my neurologist at Vanderbilt that I was expecting today. He said that the DBS Conference (I finally found out that that is the official name!) was held this morning and he brought my case up again to all in attendance. He presented the new findings and guess what?!!! I've been approved for deep brain stimulation surgery! Yay - a 1,000 times over!!!!

He again stated that my case is unique and they all agreed on that, but they also all agreed that if I was still game, DBS surgery would be the next step.

I've never been so happy or so scared about a surgery in my life, but I'm leaving it all in God's hands.

The next step is to get an appointment with the neurosurgeon. Vanderbilt is supposed to call me back on that. Today's call was only to inform me that I've been approved. :)

Now, more waiting and praying. Thank you all for traveling this road with me. There are still many steps to take before the actual deep brain stimulation and I'm trying not to get too excited (either in a good or bad way) about anything. It's not a done deal until it's a done deal!

However, today I'm celebrating a huge victory. I've said this before and I'll say it again: I don't know the future, but I know the ONE who holds my future. On this fact, I will rest!

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!

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 café 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)!

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.

An update

Yesterday, Mom and I headed back to Vanderbilt for my appointment to discuss the Baclofen pump. I actually got to sleep in until 7:30am and that was super nice :) I got up and worked out and then Mom and I left around 9:45am. We got to Nashville around 11:30am (their time) and went and ate at our new favorite place to eat while there: Provence Breads and Café. Then we perused a couple of shops until my appointment at 1:15pm. We met with a nurse practitioner who went over with us what all the neurologists had discussed in their meeting. She said that they didn't exactly know what to do with me in the sense that they didn't know if a Baclofen pump would work better or if deep brain stimulation would be the answer. So they decided to play it cautious and start with the least invasive procedure. Veronica (the nurse practitioner) was there to discuss how I would go about getting the Baclofen pump and what it would do. She said that I would need to be tested first to see if it would work. The test involves a 23 hour stay in the hospital. I have to have a lumbar puncture (spinal tap). Physical therapists will rate spasticity and other things before I'm given the spinal tap. Then I'll get the spinal tap and the Baclofen will be administered. Two hours after the Baclofen is administered, the physical therapists will come back and rate everything again. Then in another two hours they will come back and rate again. There is 4 hours total of this rating and observing. Veronica said that after a total of 6 hours the Baclofen will be out of my system. The cool thing about this drug is that it only goes to the nerves that utilize/need it and not to anything that doesn't need it. It will not effect anything that's "good", in either a negative or positive way. The bad thing about the drug is my body will become dependent on it. The physical therapists and also the neurologists are looking to discern whether I have spasticity or dystonia. If I respond in a positive way to the Baclofen then they know that it's spasticity. Spasticity does not respond well to deep brain stimulation, however Baclofen works really well for it. If I don't respond to the Baclofen, I might be back on track for deep brain stimulation. I am praying that it will be black and white. What I mean by this is I'm praying that when I get the Baclofen, I'll be able to get up and walk with no issues or it won't do a thing. It's a big prayer, I know, but God's in the business of answering big prayers. What I'm concerned about, is that it won't be so black and white and I'll have to make a decision on whether it's benefits out weigh getting it inserted and having to have it refilled. There are lots and lots of things to think and pray about! I set a date of November 16 for the spinal tap test. I have to arrive on Sunday afternoon (the 15th) so that I can get a bed (which I hear are at a premium, which is why I have to come in on a Sunday!). The test will be done on Monday morning. Side effects of the test are a spinal headache, meningitis, death. Veronica said the most common side effect is the spinal headache and that's the side effect she spent the most time discussing, although she did mention meningitis and I can't remember if Mom and I mentioned death or if she did, but it was in there too...because you have to know ALL the side effects! If the results of the spinal tap indicate that a Baclofen pump will work for me, I will have the surgery to insert it on November 23. Yes, we already scheduled the surgery. In fact, we had to schedule the surgery before the actual test because the surgery is the hardest to schedule. I'm happy that everything is scheduled, scared about the actual procedures, hopeful that I'll be able to walk again unassisted and blessed by God in so many ways they are too numerous to list!

A Television First: Live DBS

When I got to work this morning, I was greeted with my daily industry news e-mail and a surprise. For the first time on TV, there will be a two-hour special on an awake deep brain stimulation surgery. What are the odds of that?! I've been going to Vanderbilt since June in hopes that I will have deep-brain stimulation. At this time, it's on the back-burner in hopes that a less-invasive Baclofen pump will work for me, but still...deep brain stimulation will be filmed live on TV! It's air date is Sunday, October 25 at 9pm on the Nat Geo channel for those that would like to watch. I have to see if I can watch it at my parent's house, since I actually got rid of cable back in February.

As for me, I'm patiently (haha - if you know me, you know this is NOT true!) waiting for October 22 when I go back to Vanderbilt to talk about the Baclofen pump. I have no idea what to expect, but I'm thankful things are still moving forward.

A Quick Update

Last Tuesday I got a call from Patricia, my patient coordinator at Vanderbilt. She and I got an appointment scheduled for the next step. One month from today, on October 22, I'll meet a neurosurgeon and a nurse practitioner to discuss whether a Baclofen pump would help me. There's testing I'll have to have done before any actual surgery would be needed. I'm thankful they can test to see if it would be beneficial before actually doing anything invasive. If it's decided that the Baclofen pump would be of great help to me, it would be surgically implanted. But - I'm getting WAY ahead of myself. First, it's just a meeting to discuss things. :)

And that's all I have for now. See, my blog post title didn't lie, it was a quick update!

The Decision

I keep getting the sense that the Lord wants me to learn patience and yet, I fight Him tooth and nail on this and continually want things immediately. When will I ever learn? I have a feeling it's going to be a life-long battle.

I heard back from Vanderbilt and Dr. T. today about whether I've been approved for deep brain stimulation or not. I waited all day. I got off work early at 2pm (not because of this, but because everyone at work got to leave at 2pm). I hadn't heard anything by the time I left. I reasoned with myself that it was only 1pm their time and I didn't know when their meeting started or how long it would take. Dr. T. had warned me that my case may take a little longer to discuss because I'm not "classic anything". I don't fit in the classic dystonia box. I don't fit in the classic spasticity box. I'm difficult to define.  So, I waited. By 3:45pm, I was getting antsy, but still waited. By 4:30pm, I was losing hair, as I was anxiously twirling it in my fingers and wondering if maybe they cancelled their monthly meeting. And then at 5:09pm, Dr. T. called. I let it ring twice, so as not to make it look like I was waiting on pins and needles for this call. :) Dr. T. said that they all talked about me in their meeting and they came to the decision that DBS is a maybe for me. Maybe. Really?!! For those that know me extremely well, you know that I am very black and white. There's no maybe with me. It's all or none. Go big or go home. As I'm sitting here writing this post, it's striking me how ironic that the answer to deep brain stimulation for me is a maybe. God's teaching me something and it's probably patience and He's getting the last laugh!

Maybe is the answer I got. Dr. T. wants to try a Baclofen pump first. This is both discouraging and encouraging all in one. Discouraging because I've already tried Baclofen as a by-mouth drug and it didn't do anything for me. Encouraging because as my mom put it "you get to keep your hair!" And also because it's not brain surgery. Dr. T. said that before he and the other doctors go the extreme route of brain surgery, they would like to go the less-invasive route first and see if that does the trick.

Of course, I had to Google "baclofen pump for dystonia" and I came across this great description of what it is, what it does and what to expect: Baclofen Pump for Dystonia

The phone call with Dr. T. was less than 5 minutes. He said that I'd be getting a call from the clinic to set up an appointment. At first I didn't quite understand what he was talking about until I read the link that I gave above. He said that I would first be hooked up to an IV and given the medication. This didn't make sense to me because I thought I was getting a pump, but after reading the article, I now know the IV is a screening test, before any actual surgery would be performed to place the pump. If the Baclofen pump works then that's great news. If it doesn't, then DBS would be back on the table.

So now, I wait (this is becoming the story of my life!). Wait for a call from the clinic for an appointment for the Baclofen screen test, wait for the appointment, wait to see if it works. Wait, wait, wait.

Several people have told me that I have a great attitude about this whole situation, but in reality, I don't. I want what I want even when I don't know exactly what it is I want. I'm as human, sinful and broken as the next person. During the course of writing (and re-writing) this post, I've laughed and I've cried. I get so frustrated that I can't do things and then that leads to crying and feeling sorry for myself. But as I put as my post on Facebook: "I know who goes before me. I know who stands behind. The God of angel armies is always by my side." Praise Jesus this song was sung last Sunday in church (it's currently my absolute favorite and in my humble opinion we don't sing it enough!!) and Praise Jesus that I get songs stuck in my head all the time and Praise Jesus that this song has been rolling around in my head all week and Praise Jesus that I woke up to this song in my head this morning. The lyrics are what I know, but it's what I have to keep reminding myself of as well. God's got this. So, I do believe that there is a reason for all of this and whether God decides to let me in on that reason or not, I have to trust that everything will work out for His glory and really, what more could I ask for then that?

Brain Games

Yesterday (August 18) was my return to Vanderbilt. To say that I was extremely nervous about these appointments is probably the understatement of the year. I don't know why I was so nervous, but I was and it showed in probably everything I did in the days before going.

My first appointment was with the neuropsychologist. I had no idea what to expect (although they did try to prepare me with a "what to expect" letter in the mail). My appointment with this doctor was at 8am, which meant Mom and I had to leave Knoxville at 6:15am, which meant I had to get up at 5:15am. Of course it was pouring down rain when I got to Mom and Dad's house. Mom drove my car. She thought I might nap; I knew I wouldn't! There were times along the way that I thought we were going to be late, but then it looked like we might be around 15 minutes early. I was super excited about this, until we hit Nashville. Traffic was horrible!!!!! I don't know if it's like that every day or what, but we were actually 10 minutes late for the appointment. The doctor wasn't fazed by it in the least bit. He said he had come to realize that patients with the 8am appointment were bound to be late. :) He took me and Mom back to an exam room where we met Kendra who was a PhD candidate and would be the one actually administering the tests.

I got to know Dr. W. (the neuropsychologist) and he got to know me. He was incredibly personable and friendly and put me right at ease. He did say though that they had designed the tests that I was going to be taking to push me to the limit. I wasn't sure what he meant by that, but it was a little intimidating! After about a half an hour of speaking with him, it was time to start the tests. He had Mom leave the room and he did as well. It was just me and Kendra and the tests. Oh.My.Gosh. Like I said, I had no idea what to expect and the tests turned out to be intense. They started out easy enough, but got harder and harder. There were tests like: "identify the object drawn on this card". I did OK on that test until I got to the clothes pin. I knew what it did, but for the life of me I could not remember the words "clothes pin". So frustrating!!!!

Then there was a test where I had to name as many words as I could think of in 60 seconds that started with the letter "F". I couldn't use names or months though. I started out OK, and then quickly faded. I joked with Kendra that I was not ready for her to give me the letter "F". I was thinking more along the lines of an easier letter like "A". To my surprise she said, "Actually, that's the next letter I want you to use." Let me tell you, "A" was no easier than "F"!!

Then there was a test where Kendra gave me (around) 10 words (it could have been more, could of been less) and she wanted me to repeat back to her as many as I could. I thought this test would easy - WRONG! She tested me three times on this and every time, I messed up. By this time, I was regretting the fact that Mom and I had told both Dr. W. and Kendra that I had an excellent memory!!!

Then, Kendra said she was going to tell me a story and she wanted me to repeat it back to her and try to use the same language she did. I thought, "Oh great, this isn't going to be any better than the words I was supposed to remember and say back to her." But, (surprisingly to me) I remembered everything about the story. I can still tell you today what it was: On May 4 in Cleveland, Ohio there was a three alarm fire. By the time that the firemen got there, two hotels and a restaurant were destroyed." But ask me what those 10 (or more) words were from yesterday and today, the only word I can remember is "elbow" (and surprisingly enough that was one of the words I couldn't remember on all three tests yesterday). But when Kendra asked me to identify from words she said out loud which words were in the group she asked my to memorize and which ones weren't, I nailed that test!

Then there was a test where the words "red", "blue" and "green" were written and I had to identify the color that they were written in (like the word "red" was written, but the color it was written in was blue, so the correct answer is blue.) Again, I thought that this would be easy. Ha! It was not. I struggled and was not fast at all in answering.

Then there was a test where an object was at the top of a sheet of paper and then there were 4 objects below it and one of those 4 was identical to the image on the top of the page. I did well on that test, however I didn't do so well on the test where there were right angles and other shapes and I had to see which shapes matched them in a picture with many lines and shapes all jumbled together. I thought I had done well on this, but it turns out, later when given the results, I did not do well at all!

After an hour and half of this testing, it was done. I got a 30 minute break while they scored my tests. Yay! My brain hurt!

Then the interesting part happened. Dr. W. went over all the results and literally read my mind. I was amazed at how the tests I took revealed to him exactly what I was already experiencing. He said my language skills were normal. He said that I don't have any signs of dementia (praise the Lord!), but I have trouble retrieving words, which is why I had such a hard time remembering the 10 words or so and why I couldn't think of the word "clothes pin". He said this is a direct result of the dystonia. I had no idea. I thought dystonia only effected my motor skills! He said that I do know the words and recognize things, I'm just not as automatic in retrieving those words as I should be. It's like a hitch in my brain in what should be automatic. However, I do remember things when presented in a story like fashion, hence my acing the remembering the story test. He said that my resolve conflict is slower than normal for my age which contributes to my falls. It's like a hitch in what should be automatic to me. My motor execution is not automatic, but my cognitive function in fine. He said that I was in the 81-82 percentile in cognitive function which he said was great. He said my spacial judgment was a little off. When I asked him what percentile I was in for the spacial judgment, he said I was in the 5th percentile, to which I exclaimed, "that's not a little off, that's way off!!" He said that I had to take it all in context because I was so high in cognitive function that kind of levels off the spacial judgment function. When I told him that I can walk with no assistance necessary on sand, he was impressed. He said that sand is the absolute hardest surface for anyone to walk on. My being able to walk on that surface with no assistance told him that walking on it challenges my brain to engage. The other surfaces that I walk on are supposed to be automatic and it's not in me, so I'm not challenging my brain to engage in it. When I told him that different seasons also effect the way I walk (hot weather is the absolute best for me, cold weather makes me feel like I can't move.), he said that that thermoregulation is definitely a factor in neurological diseases.

Then Dr. W. showed Mom and I the place in the brain where all of these hiccups were occurring. It is deep with in the brain (hence the name for deep brain stimulation surgery!) but so very tiny. Like a pea. Maybe a little bit bigger, but I couldn't believe that this little place within the brain could cause so much havoc!! He demonstrated how the surgery would be done. It's a thin wire that would go into this place and it has 4 settings on it. The neurosurgeons would gage which setting is the best for me. This is why I have to be awake during this part of the surgery. And yes, I said "this part" because the surgery is actually done in three steps. The first is to insert bone marker screws into the brain (for this, I'm under general anesthesia.) Then a week later they would attach a frame to those screws that will hold the robotic arms. They then would drill 2 holes into my skull and lower the wires in. Then they would wake me up and do the testing and then they would plug the holes up and tuck the wires underneath my skin. The 3rd surgery would be a week later where they insert the battery pack in under my collarbone and attach all the wires to it.

I was stunned, amazed, and completely fascinated and enthralled at how much all of these neuropsychological tests can allow the neuropsychologist to be able to literally read my brain! When God made the brain, He did so with such intricate beauty and precision. I am in awe.

Next up was the motor skills test. This was fascinating to me as well. First, the physical therapist video taped everything I did. She had me stand for 30 seconds. Just stand, to see what, if anything my body did. My foot didn't disappoint. But what I found fascinating was that after she stopped the recording she asked if I meant to do "all of that" with my neck. I had no idea I was doing anything with my neck!! So, obviously she saw something. Then I did neurological tests like touching my finger to my nose and then to her finger. She made me sit on the floor and recorded how I got up. Then I had to brush my teeth (yes, actually brush my teeth - she gave me the toothbrush as a souvenir.). I had to make a sandwich (she didn't make me eat it as she said the bread wasn't stale, but it wasn't fresh either!). To make the sandwich, I had to toast the bread and unwrap a piece of cheese to go on the bread. Then I had to clean a counter. I had to brush my hair. I had to get out of bed (for this I had to get under a cover on the exam table and then get up.). I had to walk for her and I actually did this without the walker or the cane, but I had a wall if I needed to hold onto something. Then I had to walk with the walker and carry a Wal-Mart bag with me that had items in it. All the while the physical therapist was video taping me. This lasted about 90 minutes.

A few of the things Jennifer (the physical therapist that was giving me the test) observed: She commented that I rarely use my left hand. This is true! It's mostly there for show :) OK, not really. She noticed that I only used it when I absolutely had no other choice. I have definitely noticed this. I have trained my right hand to do just about everything. I told her that I can get a gallon of milk out of the refrigerator with my right hand, but if I try it with my left, my hand just goes limp. I told her that when I type, I use mostly my right hand. My left will contribute every once in awhile, but somehow, I have learned to type pretty fast using just my right hand. She also commented on the fact that I don't walk like a "normal" dystonia patient. She didn't elaborate and I didn't have a chance to ask her what she meant by that. When I told her that I can walk in sand without any assistance, I think I blew her mind. She actually said that I'm off the charts in the other direction. She said that no dystonia patient can do that. She said (echoing Dr. W.) that sand is the absolute hardest surface to walk on for anyone. She couldn't believe I could do it.

On the drive home (Mom was driving), I commented to Mom that I was absolutely drained. And she said that she wasn't surprised by that. The thing was, I was surprised by it! I went in thinking these tests would be a breeze and I came out knowing my brain was completely drained. I gave it my all. I finally knew what Dr. W. meant when he said he was going to stretch my brain to its absolute limit! He did and I was spent. I tried napping on the way home and did a little, but it wasn't until I actually got home that I realized the depth of how drained I was. I went to bed at 9pm.

The next step is for all the neurologists, neurosurgeons, neuropsychologists, physical therapists and probably more people that I don't even have on my radar now to meet on September 4. My case will be brought up and discussed and everyone has to agree that I'm a good candidate for deep brain stimulation surgery. So, September 4 is D-day (decision day). I'll either be moving forward (deciding if I actually want to go through with the surgery, getting insurance approval, meeting with the neurosurgeon, getting a surgery date set...) or will find out if I'm not a candidate. Either Patricia (my patient coordinator) or Dr. T. will call me that day and let me know of the outcome. Until then, I wait and I pray and I wait some more and I pray some more!

I truly believe that everything is in God's hands. He'll let me know the decision soon enough! Until then it's wait and pray and then repeat. :)

Back to Vanderbilt

I have a testing date! August 18 I'll be heading back to Vanderbilt. I have two appointments set up. I will see a Neuropsychologist at 8am and that appointment will last 3 to 3 and 1/2 hours. Then at 1pm I have a motor skills test that will last 2 hours. I'm glad that I'm being sent information on both appointments because I have absolutely no idea what to expect. I was told that I need to bring someone along with me and I am very thankful and grateful that Mom is going with me. I'll admit, I'm anxious about these appointments, but I know nothing will happen that God hasn't already ordained. Patricia (my patient coordinator) told me that my case will be reviewed and discussed when all the neurologists meet on September 4 and that either Dr. T. or she would call me to let me know the results.

I am so, so thankful that things are moving forward. I am realistic though and am trying not to get my hopes up for anything. These tests that I'm having may reveal that I'm not a candidate for deep brain stimulation. Or, I could have the surgery and still not see any results. I am so glad that God's got control of all of this and I need only to follow His direction. I am very aware that there are others out there in worse shape then me and I have to prepare myself for the news that I'm not a candidate for DBS. But, one day at a time, right?

I got a piece of mail from Vanderbilt this week that made me laugh. Back in 2008/2009, I had shunt surgery at the children's hospital because my neurosurgeon was a pediatric neurosurgeon who also performed surgery on adults. I still get mail from them telling me about hydrocephalus walks and the like. (At that time, that's what they thought I had: hydrocephalus) but I've never gotten a piece of mail addressed to my parents (or in this case parent.), but sent to my address.:

It gave me a good laugh!

I'll close by saying that, yes, I am anxious about what's to come or not to come, but I know it will all work out for God's glory. God's teaching me so much through this journey. My hope and wish is that I will glorify God with each step I take. I fail at this every day, but that's where His grace comes in and I am so very, very thankful for that!

Some News

Yesterday (Monday), I got a call from my doctor's office saying that they had gotten the results of the 24-hour urine test that I had done and they were faxing it to the neurologist that I saw at Vanderbilt (the one who ordered the test). I asked if they could give me the results and they couldn't. I'm not sure if it was because they didn't know how to read them or if they didn't know what the doctor was specifically testing for or if it was because of HIPPA laws, but I was going to have to wait for the results. I carried my phone around all day hoping Vanderbilt would call, but they didn't. So this morning, I begged Jesus to have them call me. Yes, I know it's a little thing, but God's in the details! And He answered my prayer!!!

Patricia (my patient coordinator at Vanderbilt) called me with news this afternoon: I don't have Wilson's disease!! And yes, as opposed to my last blog update, I am SO HAPPY that I don't have it. This actually does surprise me a little bit (that I'm happy about not having it) because of how much I actually thought that it may be the lesser of two evils. But now that I know I don't have it, I am extremely happy!! Because of this news, Dr. T. (my neurologist at Vanderbilt) approved me for the next steps in getting deep brain stimulation if that's how I want to continue. It is.

So, Patricia has to coordinate two more appointments for me. One is the motor skills appointment and she said that would last about 2 hours and the other is the cognitive psych appointment and that, she said, would last about 3 to three and half hours. She said she could break the appointments up over two days or schedule them both on the same day. Since I'm driving from Knoxville, I asked that they be on the same day. It's the kill two birds with one stone way of doing things! Plus, as you all know, I'm not very patient! She said that the goal is to get all of these tests done in time for Dr. T. to present my case to all the other neurologists in their September 4 meeting. We talked about days that I couldn't do and she said that she had to get with both of those departments and would call me back when a date is set. So that's it for now. I'm very happy that the ball is now once again rolling. It rolled several times before, but it was always stop and go.

I'll update the blog again when I have a confirmed date. Pray that I pass these tests (I really do feel like I'm in school again) if it's God's will. I take comfort in the fact that God knows all things and He knows if I'm a candidate or not for DBS. In His time everything will be laid out like He planned. If I get DBS and it works and I can walk without a walker or cane - PRAISE JESUS!! If I don't qualify for the surgery or even if I have the surgery and I still can't walk without the walker or cane, I will still PRAISE JESUS. He's daily teaching me things (even patience, although I'm a begrudging pupil on that one!). I'm in God's hands and for that, I am very thankful!

In Progress...The Next Step

I haven't updated this blog since my Vanderbilt consult on June 30 because there really hasn't been anything to update about. I had the consult right before the July 4 holiday, so I knew it would be a little while before I heard back. But two weeks after the appointment, I got antsy and called Vanderbilt. They had not received any information from the Mayo Clinic yet. They suggested that maybe I should call Mayo and see what the hold-up was. So I called and Mayo said that they had in fact received the request that Vanderbilt had sent, but there were so many patients asking for records to be sent that they were about 2 weeks behind in sending records out. I called them on a Friday (I know, probably a HORRIBLE day to call!) and they said that my records should arrive at Vanderbilt by the middle of the next week. I called Vanderbilt back and informed them of this. While I was on the phone with them, it struck me that maybe, just maybe my internist might have those Mayo records. I told Vanderbilt that I was going to call them and see and if they did, I'd have them faxed over to them. Why I didn't think of this before, I have no idea! I called my internist and he did have them!! I requested that they be faxed to Vanderbilt and then asked if those results showed if Mayo had tested my copper levels. They had and mine were fine. I asked what they meant by fine and the nurse explained that copper levels should be within a 75-144 something or other range (I really don't remember, all I remember were the numbers) and mine were 122. At this, I became my own doctor and ruled out Wilson's. I was in a horrible mood the rest of the day! And as much as I thought I had prepared myself for any answer, I realized that I had my hopes on having Wilson's (as strange as that may seem). It struck me that on June 29, Wilson's wasn't even on my radar and by July, I really wanted to have it. It sounds extremely strange and wrong to say that I "want" a disease or hope that I have it, but after pondering that awhile, I came to the conclusion that it's more that I want everything wrapped up in a neat little box, then I actually want a disease. Symptoms could be blamed on one thing. I could take a pill and everything would be good. In reality, even if I do have Wilson's, I'm not sure that taking a pill or supplement will heal everything. It might be that I have walking problems the rest of my life. So, after being in a bad mood the rest of the day, surprisingly I woke up the next day, Saturday, in an excellent mood. I'm not being sarcastic either. I don't know what God did to me overnight, but my mood the next day was a complete 180 from the day before. It was a new day and God saw fit to wake me up. I wasn't going to waste it! I had a most excellent day.

The following weeks were spent waiting on a call from Vanderbilt. Yes, I could have called them and I almost did, but I kept coming back to the conclusion that if there was anything to call about they would call. Plus, I just knew that I had my answer: it wasn't Wilson's. I wasn't as anxious to receive a call as I had been! So I waited. As stated before I am probably one of the world's least patient people, but I really think God was using the time that I didn't hear from Vanderbilt to mold and shape me. I still don't know what He's molding and shaping me into, but I do know He's working on me. Then, this past Wednesday, I got home from work and checked the mail. There was something from Vanderbilt. I got excited for a second and then thought, "it's probably a bill". But I opened it and it wasn't a bill. It was a prescription. It wasn't a prescription for drugs though, it was a prescription for a test - a 24 hour urine collection test (oh joy!). So...this means that the doctor did receive my test results from the Mayo Clinic and he hasn't completely ruled Wilson's out. This is why he's the doctor and I am not. He had mentioned to Mom and I that even if my blood tests came back OK, that he might prescribe a urine test too. So, this is the next step. I called my internist's office and asked if they did those tests and they said yes, so on Thursday I went and picked up the supplies. Thankfully I can do this test over the weekend and can return it to them on Monday. I really hope that people who have to analyze this stuff get paid big bucks because I think it's kind of disgusting! I'm glad I picked up the supplies on Thursday because I ended up having a ton of questions and must have called the lab lady 20 times! I felt so bad, but she was so sweet and answered all of them.

That's where things stand now. I'm going to do the test tomorrow (I don't want pee sitting around my house for any longer than I have to have it there!!). Thankfully, I don't have to refrigerate it, as they want it room temp. I think if I had to do that I'd be sanitizing my fridge for the next month or so. After I do the test, I'm sure there will be lots more waiting. Whoever has been praying that I have patience, please stop. ;) I'm kidding, really. I don't like waiting (who does?), but God's ways are not my ways and He's teaching me something, even if I don't yet know what that something is.

Flattered or Frustrated?

What a day yesterday was. It started about 4am when I was awakened by the massive thunder and lightning going on outside. I was able to eventually go back to sleep, but I still got up early and exercised. I picked Mom up at 8am to begin our road trip to Nashville. I had to laugh – we were dressed alike!! I guess that phrase “like mother, like daughter” applies in this situation. I mean, how does that happen? We don’t even live in the same house! We were both dressed in coral colored sundresses.

We had a non-eventful drive and nice conversations. I could tell I was nervous though because I kept biting my nails (on the drive home, I switched to twirling my hair). Oh well. We arrived at the doctor’s office a half hour before my appointment time, but I was signed in and taken back almost immediately. Efficiency – I love it!! The medical assistant weighed me and took vitals. My blood pressure was a little high (see, I knew I was a little nervous!). She then got all of my information entered into the computer and then the doctor came in.

This is where I don’t know whether to be flattered (in a weird kind of way) or frustrated. The doctor came in and said that he had read through and studied my file. His diagnosis: I am unique and complicated. I’m not your run-of-the-mill dystonia case. He said he’s not even convinced I have dystonia. He asked Mom and me if I had ever been diagnosed or tested for Wilson’s disease. I know I have not ever been diagnosed with it, but I couldn’t tell him for sure if I have ever been tested for it. I know at the Mayo Clinic they took blood and ran different tests, but I’m not sure if they ruled Wilson’s disease out or not. He asked if I could get those results for him. I said I would. In the end, I ended up signing a release that Vanderbilt was going to fax in to Mayo, requesting that Mayo send Vanderbilt my results. The only place I’ve ever heard of Wilson’s is in an episode of House. Last night, after I got home, I tried to find the episode, but didn’t succeed. I was also extremely tired, so I gave up looking for it. I did find it today. It's in season 1 and the episode is titled "The Socratic Method". Anyway, the doctor explained what Wilson’s is. It is a genetic disease in which both parents have to be the carrier of a certain weak/faulty gene. It’s a build-up of copper in one’s system. The doctor was adamant that he rule Wilson’s out first before going any further with my case. He said if I do have it, I need to start treatment for it right away. Treatment is to take zinc. He said that Wilson’s is called the great masker. There are so many symptoms of the disease that it’s usually masked and people with it are diagnosed with other diseases first. Come to find out (when I Googled it that night at home), it's fatal, if not treated. To which one of my brothers (who shall remain nameless!) said, “Life is fatal”. Thank you so much for that reminder – haha!

The doctor went on to do a physical exam in which he made me walk for him (which I hate!) and he did all the other neurological tests. One of those tests was to pinch my fingers and toes. He did this several times so I asked what he was looking for. He said that when he did that, my thumb was supposed to turn inward and mine didn’t. Again, I’m unique and complicated. Mom, at one point, told him I didn’t walk until I was 18 months old and I never crawled – I just got up and walked. He said that his son didn’t walk until 18 months either. That made me feel a little better. He said that I seem to have symptoms of both dystonia and spasticity. If I do have dystonia, he thinks it’s secondary and he said that unfortunately, deep brain stimulation doesn’t work as well on secondary dystonia or spasticity. He said the treatment for dystonia is BOTOX. There are three different kinds – two of which I‘ve already tried. I’ve got an immunity to Botox A and Botox B didn’t work (or maybe it’s the other way around, but either way, I’ve exhausted two of the three options). He also talked about a Baclofen pump. Baclofen is a drug used to treat dystonia and the pump would deliver it straight to my spinal cord. So, that’s an option. He said that if he rules Wilson’s out and I still want to pursue the surgical option (deep brain stimulation), he would send me on to stage 2 where I would meet with a physical therapist and they would video tape me walking and I would take a motor-function test. I would also have to have a psych test. If those tests came back OK, then he would bring my case before all the other neurologists in the hospital and they would discuss it and determine whether I was a good candidate for DBS or not. He mentioned that my case would take longer to discuss because I’m so unique and complicated. Again, should I feel flattered by that? Mom said later that at least I’m unforgettable.

Mom asked me on the way back from Vanderbilt what I was going to blog about. I told her then that I wasn’t sure because I still had to process everything. I was NOT expecting to get yet another diagnosis. That threw me for a loop. But one good sign was that I didn’t cry all the way back to Knoxville, which I’ve done at every other consultation. That’s a sign of growth, right?! As we were driving back, we went through Wilson County. Is that a sign?

When we got home, I stayed at Mom and Dad’s for supper. As Mom prepared it, I Googled Wilson’s disease. Whether or not that was a good thing, is debatable. However, the more I read the more convinced I was that maybe I do have it. Mom asked what my gut reaction was and I told her at that time that I felt like I didn’t have it. I just couldn’t believe that Mayo wouldn’t have tested for it and ruled it out. But, the more I read (from Mayo’s web-site as well as the NIH’s website and a Wilson’s disease website), the more I started piecing bits of my life together. Things I (up to this point) never thought of as related started to jump out at me. In the process of Googling all of this, Dad came home and he also started Googling it. Then all of the sudden he said that his grandfather died of cirrhosis of the liver, but he never drank. After a few minutes, Mom remembered that her grandfather also died of cirrhosis of the liver and he too never drank. Could it possibly be that both of my parents are a carrier of this weaker gene? Wilson’s effects the liver. I’ve been told within the past couple of years by doctors that they think I have a faulty enzyme within my liver which causes medication not to be absorbed in a normal way. Basically I have a rapid metabolizer gene and I have to end up taking a higher dose of medication (whatever that might be) to get the same results of a person taking a normal dose. Wilson’s also manifests itself in both neurological and physiological symptoms. Well, I have panic attacks and anxiety and nervousness. I had them since I was about 10. And the neuro symptoms started when I was in my mid 20’s. As my Mom said, there’s nothing that we’re reading about that excludes me from having it. So, maybe I do, maybe I don’t. I don’t want to get excited thinking I have this though, because in the back of my mind, I again go back to when Mayo did blood work and I highly doubt that they would have not ruled it out.

So that’s where I stand now – waiting (my least favorite thing to do!). I have to wait for Mayo to send the lab work to Vanderbilt and then for the doctor to study it. If Mayo didn’t do the tests for Wilson’s (which, again, I highly suspect they did), then the Vanderbilt neurologist will order that I get it done. He said that also a 24-hour urine collection test would be a good indicator, so he may order that as well. If it’s Wilson’s I’d be treated for that, which would mean probably no deep brain stimulation. If it’s not Wilson’s he’ll send me on to stage two in the deep brain stimulation process.

It's a lot to comprehend. Again, I don't want to start thinking in one direction (Wilson's) only to get a call in a few days to say that Wilson's was ruled out. I don't know what the future holds, but I do know Who holds my future. So again, I'll have my favorite Bible verse on repeat in my brain: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

10 Days

In 10 days I have my initial DBS (deep brain stimulation) appointment at Vanderbilt. Last night I got a packet of information from Vanderbilt on what to expect (along with paperwork to fill out and directions to the clinic).

I spent my Friday night curled up on the couch, first reading my newest edition of People and then reading through all the information. :)

To satisfy the media nerd in me, there was even a DVD, which of course I watched.

I've been excited as well as nervous about this upcoming appointment. I guess you could say it's actually a nervous excitement - yes, that's what it is. I always get nervous before I see a new doctor. But I'm excited too. I so want to be able to walk without a walker or a cane again. Maybe this is the answer, but then again, maybe not. I just have to wait (which I'm not very good at!) and see what the doctors say.

Speaking of doctors, I "met" my Vanderbilt DBS neurologist through a biography page that was sent in the packet. I'm pretty sure we're the same age. He graduated college the same year I did and then went on to medical school. I guess I'm getting to that age where doctors can be my age - haha!! My younger (by 7 years!) brother is a doctor, so YES, I'm at that age ;)

I completely understand that I may not "get" to have DBS. (I put "get" in quotes because, if I have it, it's not going to be a picnic in the park and it won't cure me. It is, after all, brain surgery and there are risks associated with it.) I do want to be able to walk without a walker, but God may have other plans for me and DBS may not be His plan. Even if I have the surgery, it may cause other problems, or not help me in any way (I've been through that before with the shunt.) So, if I hear "you're not a candidate", I'll take it as a sign from God that DBS is not for me. I have to say that in many ways I have been blessed because of the walker and the dystonia. There are people I have met and things I've gotten to do and I have dystonia to thank for that. But, to be able to walk assistance-free: I can only imagine! If you can walk like that now, please don't take it for granted!!! I can honestly say, I probably did. And now walking assistance-free is something I dream about.

I am resolving in the next 10 days to NOT worry or be anxious about anything (which I am very prone to do!), but in prayer and petition, with thanksgiving, I will present my requests to God. (Philippians 4:6) I'll let God determine the path my feet shall take and I'll rest in the knowledge that He knows what's best.

A Deep Brain Stimulation Appointment

I have a deep brain stimulation appointment at Vanderbilt set for June 30 at 10am. I got a call from Patricia at the Vanderbilt DBS clinic. She's my coordinator now. She said she'll be with me every step of the way and I can call her if I have any questions. She explained what was going to happen. June 30 is just a consultation with a neurologist. She said I'll get to know him and he'll get to know me. He'll evaluate my symptoms and he'll be the one to see if I'm eligible to go forward with DBS. IF (and that's a big if right now) he thinks I meet the criteria to have DBS, I'll have what they call a pre-op evaluation. Patricia said that this consists of two appointments that can normally be done in one day. One is a motor skills evaluation and the other is a neuro-psychological evaluation. IF (another big if!) those appointments pan out and the doctors doing the evaluations think that I'm a candidate for DBS, the next step is for my neurologist to bring my case before the rest of the neurologists in the clinic. They meet every month on the 1st to discuss their patients and see who actually qualifies for the surgery. If they all agree that I am the "perfect" candidate for the surgery, then the surgery date is set.

Back to Patricia for a minute. At the end of our call, she said, "I see you have a birthday next Friday - happy birthday!" She mentioned that her birthday was on June 8 and that we are the same age. I wished her a happy birthday too. I found it funny though because she said that technically she's a few days older than me. I said I didn't mind because I'm the oldest in my family. She said she was the baby in her family. So we got to swap roles for a minute. :) She seems really sweet and I'll get to meet her on June 30.

I have to say that I am SO HAPPY that I made it through the first hoop - getting an appointment at the clinic. But, it's going to be a long ride. I'm kind of nervous about the whole thing, because I have a feeling it's going to be like I'm in school again. I have to "pass the test" every time and I'm a horrible test taker. But, one step at a time...if I get through the initial consultation and the neurologist feels like I'm a good candidate, then I'll worry about the next step. Who know? I might not make it through the consultation. He may say I don't qualify. So there is no need to worry about something that may not even happen.

I'm excited about the future and what it may hold. I'm trying to be realistic though and not get my hopes up too high. I do know who holds my future in His hands, so I'll rest in that. Whatever may come, I know the Lord will fight for me. He always has my best interests in mind.

Weekend Fun

I had such a wonderful weekend this past weekend, that’s it’s taken me until Tuesday to blog about it!

It all started on Friday with a call from Dr. L’s office. I’ve been approved for a consultation on deep brain stimulation at Vanderbilt! I am so excited about this potential treatment, but at the same time I don’t want to get my hopes up too high. I might not even be a candidate for it, but at least I’ll get an appointment to see if I am. Dr. L’s office said that Vanderbilt should call me within a few days to set up an appointment.

Saturday was the Garth Brooks concert. It was awesome, epic and so much fun!!!! It was everything I thought it would be. Mom and I had special shirts made by friends of ours and we felt like rock stars. Seriously! Every person we walked by was super impressed by the shirts and wanted to know where we got them. Here’s a picture of us:

I went over to Mom and Dad’s house before the concert and my niece was there. She’s 11 months old today and she was mesmerized by the lights on our shirts. She kept looking at them and touching them. It was so cute to see her reaction to them. Mom and I were going to go to a Retropolitan craft show and out to eat before the concert. Halfway to our destination, I realized I forgot my handicap car tag (Mom was driving us in her car). So we had to circle back and grab that. By the time we got back downtown it was about 4:30pm. The concert started at 7:30pm and the doors opened at 6pm. We went to the craft fair and then to Sweet P’s (a BBQ joint). It was a great place to eat. We got one plate and split it. We had the brisket (I’d never had brisket before) and I went all in and got the macaroni and cheese. This was NOT a calorie free or friendly meal, but it was so good!

After dinner we headed on down to the concert. Parking proved to be difficult. I had bought a premium parking ticket ahead of time, but finding where “Staff Lot 5” was proved to be our challenge. It would have been easy to get to if streets weren’t closed and people weren’t giving us the “wrong” directions (telling us roads to go down that were blocked off). I think it took us around 10-20 minutes to find where we were supposed to park, but once we did – we had an AWESOME parking spot. It was in between the arena and the parking garage. We found out that there were only 15 parking spots in that area. It was right across the street from the door to the arena! It was well worth the money (in my opinion). We got inside the arena and everyone we passed pointed out and commented on our t-shirts! Mom bought me an official Garth Brooks tour T-shirt and we went to our seats, only to find a few minutes later that we were in the wrong section. We moved over one section and I think we had better seats there anyway! We were an hour early – not sure how that happened! We took selfies and pictures of the stage and people watched until the concert started.

I was so excited, I could hardly stand it!! We saw a couple from church a few rows down from us and talked with them for a while. Then the concert started. It was awesome!!! Garth did not disappoint. That guy has so much energy and enthusiasm and heart. It was an epic concert!!!! I had a blast.

When it was all over and done with, I asked Mom if we could wait a few minutes and let the crowd die down some before we left the arena. We sat back in our seats and were again complimented over and over and over on our t-shirts by those filing out of the arena. When we finally got up to leave we walked out and in the hallways of the arena, people still stopped and commented on our shirts. These two girls were in line to meet one of Garth’s back-up singers and they pointed at us and said “we were sitting on the opposite side of the arena from you and we saw your T-shirts!! We were wondering if we’d get to see them up close. We LOVE them!!” I was SO happy to hear that they saw them across the arena. Mission Accomplished!!!!!!!!!! I SO hope Garth saw them from the stage. It was an awesome-I’ll remember it forever- night!! I am so blessed to have spent it with my mom. She obliged me and wore her t-shirt with pride, even though I know she doesn’t like to wear t-shirts. She humored me and wore it anyway. She also bought me shorts to wear with it. They were as epic as the shirts because they were metallic silver and I’m pretty sure I was solar powering the sun while wearing them. I thought, I’m already wearing the shirt, so I must go ALL THE WAY and wear the shorts too. It was a “go big or go home moment”! The Garth Brooks concert was an early birthday gift from Mom and Dad and I had the absolute BEST time. I’ll always remember it and cherish it.

Sunday, the fun continued. After church (which was great!), Dad and I headed out to a Smokies baseball game with members from our church. It was our church’s “event of the month”. The only problem: rain! It poured (and by poured, I mean it was a deluge!!) in Knoxville. We had to go to Sevierville for the game and by the time we got there it was still raining, but not as hard. The game was rain delayed for an hour, but then it was under way. I loved spending time with Dad and others from church. I’m not a huge sports fan (what’s weird is that I LOVE sports movies, but can’t really stand to watch actual sports except figure skating (and YES that is a sport), and the occasional UT football/basketball game), but it was really fun. I liked my “Dad and Stephanie” time the best though. I told him all about the Garth concert and we had a great time talking in the car on the way to and from the game (it’s about a 45 minute drive one way). We ended up leaving a little before the game ended because it looked like a massive storm was coming and our team was losing. It did storm and our team did lose, but I still had a great time and was so glad I got to go.

I was reminded once again that God gives us all good things, even when we don’t deserve them. I had a wonderful, memory-making weekend and it’s not lost on me how blessed I am.