MRI, Barrows, and New Treatment Plan

I'm honestly not sure how to write an update. Its not that the news is terrible, or overly complicated....I think I'm just ready to be done with the whole thing, and it's definitely not over yet. I had an MRI this past Monday, and met with my Barrow's neurologist today. I finished plasmapheresis just over two weeks ago, and we were hoping the treatment would deactivate the lesion; that it would no longer "enhance" on the contrast views of my MRI. The purpose of the meeting today was to review the new MRI, talk more about Tumefactive MS, and talk about our plan for ongoing treatment.

Surprisingly, I was as nervous as ever going into this appointment. Fortunately, my doctor explained everything in detail, and made sure I left with all my questions answered, and a solid plan in place.

In a nutshell, here is the update:

MRI
The news on the MRI is good, bad, and uncertain. The good news is that my lesion hasn't grown in the past two weeks, which is one thing we were hoping for. And it means I'm in the clear for right now. The bad news is that the plasmapheresis hasn't changed the lesion at all, and the enhancement pattern is almost identical to what we saw before the treatment. Dr. Okuda said he would have expected to see a change there, and he's not sure why neither the steroids nor plasmapheresis have been able to deactivate this lesion. He did say that it's still a good thing we did the plasmapheresis because it protects my brain tissue, and is possibly the reason the lesion hasn't grown. He is still confident that this is Tumefactive MS (TMS), but says that he is going to be extremely proactive about making sure he isn't wrong. He said, "I can't afford to be wrong, because if I'm wrong, and it turns out to be a tumor, your mom will kill me!" Haha. We are going to repeat the MRI in a month, and if the lesion has grown at all, Dr. O says that I will be "getting a new haircut." Aka...a biopsy would be back on the table. Uggh. Considering that this thing grew several millimeters in the two months before my plasmapheresis, I'm not feeling overly confident that it will stop growing. I'm hopeful, but not confident. I'm so tired of the uncertainty. If I had a jerk doctor, I think I'd honestly give up at this point. Dr. O is helping me stay positive and proactive, and keeps me laughing, even when we are talking about serious stuff. He gave me a big hug when I left, and I know he really cares about me and that he's spent alot of time thinking about my case. For me right now, that is making the difference between impossible and bearable.

Treatment Plan
The MS drug we chose is a once monthly IV infusion called Tysabri. (When it comes to MS drugs, there are several choices.) Originally, we were planning to go with Avonex or Copaxone, but since the plasmapheresis didn't do what we hoped, my doctor thinks it's important to to try something stronger, with a better chance of protecting my brain tissue. Tysabri has some dangerous side effects, but the worst of these, PML (Progressive multifocal leukoencephalopath), rarely happens in the first year, so we are planning to use it for a year and then switch to something else. Dr. O is confident this is the best treatment for me right now. I also have another med that is supposed to help with fatigue, which is probably my most difficult symptom these days. I'm hoping it helps! We will also continue with frequent MRIs until we are certain that the lesion is under control.


I don't know why this has all hit me today. Maybe because I've started trying to get back to my normal life and routines, and suddenly my "real" life and my medical life are colliding. For the past several months, I've been living in some sort of alternate world, and I think I thought I'd wake up from it one day and return to normal life. Now that I feel like I've returned to the real world, I guess I'm pretty frustrated that the medical world has followed me.

Despite all the chaos and frustration, I am constantly reminded that God knows me personally, and that he is watching out for me. I truly believe that God is our Father, that he knows us, and that he loves us not just as a group of people, but individually, even with all our flaws and weaknesses. I am forever grateful to know that, and know he will help me get through whatever may come down the road.

Home for Valentines!

There is something about me, the hospital, and holidays! I've had hospital rooms decorated for Halloween, Thanksgiving, Christmas, and now Valentine's! I haven't missed a major holiday! Guess I'll have to watch out when Easter rolls around. 

The good news?! I am home!!! I finished my final plasmapheresis treatment yesterday, got the results of my MRI (the lesion seems to be reacting to the treatment), had the plasmapheresis tubes pulled out of my neck (NOT fun!), and Dr. Okuda expedited my discharge! He will see me back in two weeks, and we will talk about long term disease modifying treatments. He discussed the options with me briefly, but we will make some actual decisions at the next appointment. As for the lesion, and its progress, we won't know if the treatments were a success until the next MRI in a month. We will be watching it closely to see if it's growing or changing. The hope is that the combination of steroids and plasmapheresis treatment will have successfully deactivated the current lesion, and that we will be able to prevent any future lesions or complications by starting me on long term MS medications. 

I've been realizing how rare Tumefactive MS is, and how little research and information is published on the subject. I've started a tab on this blog to collect some if the information I'm finding. I'll also try to keep track of the information the doctor gives me as we discuss my condition and treatment options.

This doctor continues to impress me with his expertise and his care of my case. It is the hugest weight off my back to not feel like I have to solve my own medical mysteries! I think I mentioned before that Dr. Okuda was gone for two of the days I was in the hospital to a medical conference in Florida. When he came back, he brought me a Florida T-shirt! Haha! That totally made my day! I think he knows how desperate I've been to have a doc who cares, and he is going above and beyond to show me that he does! Dr. Okuda is the Chief of Neuro-Immunology and the Director of the Multiple Sclerosis Center at Barrow Neurological Institute. Aka...he's one of the most accomplished and highly qualified docs in the country! I seriously can't believe how blessed I am to have him helping me.

It is good to be home...I am feeling a little unusual today, but I guess that is expected after springing from the hospital. Thanks everyone for your support and thoughtful messages. 

Mandy

Day Three Plasmapheresis

Today I did much better with the plasmapheresis. I took Tylenol, zofran, and a large infusion of fluids before starting, and I think it really helped.

I had to get a new IV today, and strangely, it started gushing blood everywhere. Might have been the anticoagulants, or my lowering platelet counts, but blood was gushing out everywhere. The poor nurse was already stressed about getting my line in because I'm a hard stick, and I think the whole experience shook her up a little. I didn't love it either!

We did another brain MRI today; a more advanced kind. Docs wouldn't say specifically what we are looking for (my doc is out of town for two days!) but I assume general progress. Still checking blood sugars, sadly. They did a PT evaluation on me; they are trying to be sure I don't lose all the progress I've already made with my walking and balance.

I decided to be really morbid today and watch the plasmapheresis lady change the dressing on my neck tubes. I couldn't resist. So I saw the tubes diving down through a hole in my flesh, saw the stitches keeping them in place....pretty intense! But fascinating if I can forget it's my neck!

I got to hang out with Tara (Schlappi) Bodrero today, and had a great time! She braved the blood treatments, kept me entertained, and we watched a movie, it was so much fun! I also got to see my mom and sisters and Shannon Sowby, which was great! It was actually a pretty good day today. Hoping tomorrow will be just as good!

Mandy

Day Two Plasmapheresis

Hanging in there! Today the treatments made me pretty sick. Not sure if it was the steroids or tampering with my blood, but I had a pretty rough reaction. Docs thought it was likely the change in blood pressure and the shifting of all my blood fluids. I'm still suspicious of the steroids, because I know those make me sick! They are going to give me some meds ahead of my blood treatments tomorrow that should hopefully help.

On a note of complaint (Lol) my blood sugar was high yesterday, so they've been poking me every few hours to test it. One more great reason to get poked! I asked my nurse how much longer we'd have to keep this up, and she said we could stop it tomorrow, since it's been normal all day. But then she checked it and it was 215! (it had been 90-100 all day. Thank you steroids!) So I'm getting an insulin shot, and they'll be poking me for sugars all day tomorrow. Dumb.

I saw my doctor again this morning, and he continues to amaze me. He's smart, he listens, he cares, he has a strong plan for my care, he acts like he's a long time friend of the family, and like he's not in a rush! Does that sound like a neurologist to anyone!? He might just be part of my imagination, because I can barely believe it. He also gave us his direct phone number and email address and said to call if we need anything or have any questions. Amazing!

My mom was here all day, and Micaela, Garner, Michael, and Rick all visited today. I have a few other friends and family scheduled tomorrow, so at least I have good company to boost my spirits! When my brother came, I think he about passed out looking at the blood running in and out of me! He's had a jugular line before, so he knows the torture first hand!

Thanks for all the thoughts and prayers. They truly keep me going.

xoxo

Mandy

pic: prepping the plasma lines

pic of plasmapheresis lines

Jugular Vein! Blood in, Blood Out

Plasmapheresis! They say the full supply of my blood will cycle out several times, each day we do this. Note the large bag of golden fluid on the side of the machine....that's my plasma. Guess what they did with it when we were done?? They threw it in the trash!! See the glass bottles up top with the honey colored fluid (actually kind of bubbly in this picture)? That's the plasma replacement fluid.

They check my blood pressure every ten minutes to be sure the machine doesn't have too much of my blood out at once. Those ropes protruding out of my neck are as bothersome as they look! It hurts, and it creeps me out! But the concept of this treatment is fascinating, when I can forget its being done on me!

Back in the Hospital!

So I'm sitting here listening to the click-click-click of an IV dripping into my arm. This is not how I expected this day to end! We knew this was a really important appointment with the Barrow's neurologist, but we couldn't have predicted that it would land me in the hospital! 

I will try to explain more when I'm not so exhausted, but we've been getting alot of questions, so wanted to post some basics. First off, this neurologist is amazing! He is everything I have been hoping and praying for. He is smart, compassionate, charismatic, took time to explain my case and his thoughts, and also explained exactly what he was looking for and noticing while he did my neuro exam!! (please note my comments about this in the last post. Lol...This was too perfect!) After the exam, he took my mom and me into his office where he taught me several things about reading my MRI, which I loved. The biggest news of all? This doctor is so smart and experienced, that he isn't baffled by my case at all! He explained exactly what he was looking at, how he thought the many puzzle pieces fit together, and why he was thinking what he was thinking!....and best of all, he was confident in his assessment. Up to this point, doctors haven't been able to do much more than exclaim about my unusual case and how they wish they had answers for me. I am so grateful to have found this neurologist! For anyone wondering, he is Dr. Darin T. Okuda. Thanks to everyone who was praying for me to find an amazing, and helpful doctor. That prayer has been answered!

This doctor's conclusions:

This isn't typical MS. The lesion is a demyelinating lesion, and the disease is in the MS family. The disease is called Tumefactive MS, and it is fairly unusual. Like regular MS, it can have a one time episode and never come back, or it can reappear in 15-20 years, or it can convert to more traditional relapsing-remitting MS. His goal is to make sure I stay in the first category!

When it comes to considering a biopsy of the lesion, the doc pointed out how the lesion is respecting the folds in my brain, not crashing through them, even though it is growing. He says that makes him confident that it is not a tumor. He does acknowledge the possibility that he could be wrong, so we will repeat the MRIs monthly and then bimonthly to keep a close watch on things. He thinks that the spinal MRI's we have done were not sensitive enough, so we will be repeating that tomorrow. 

Take Aways

The biggest take-away was not only a working diagnosis of Tumefactive MS, but also an assessment of where the lesion is at. He showed me the different views of the MRI scan, and how it is still lighting up under contrast. A demyelination shouldn't do that unless it's still active and growing. It is unusual that this lesion is still growing, since we already blasted it with 1000mg of solumedrol steroids every day for a week, and prednisone for four weeks! But it's still active, and he said our primary focus right now needs to be getting that lesion under control. So he proposed admitting me to the hospital for another round of steroids, and plasmapheresis. Has anyone ever seen or heard of plasmapheresis? It makes me sick just thinking of it. Tomorrow morning they are going to take me down to the immuno-hemo-something-or-other center and put a tube through my neck and INTO MY JUGULAR VEIN! Any guesses why I'm not sleeping right now?? Plasmapheresis is pulling your blood outside of your body, separating the plasma from the red blood cells, removing and discarding the plasma, and then putting the red blood cells and a plasma replacement back into the body. It has been shown in many studies to reduce the severity of MS and MS lesions, and also clears the body of unwanted antibodies. Crazy stuff. I hate regular needles and IVs...this one scares me to death!

The Game Plan

1. Admission to hospital for plasmapheresis and IV solumedrol steroids. I'll have five days of plasmapheresis, starting tomorrow.

2. Repeat the spinal MRI tomorrow, to get a clearer image

3. Monthly and then bi-monthly MRIs to monitor the lesion

4. Any other follow up that comes as a result of things learned here in the hospital

I will try to write more about todays events when I am not so tired. And you can be sure I will be writing an update about my first day of blood letting tomorrow! 

Till tomorrow,

Mandy

Blood Drain Tomorrow!

Albumin (Human), Heparin, anticoagulant, calcium gluconate. These are some of the supplies left in my room in preparation for the blood drain tomorrow!

Blessings Today, Barrows Tomorrow!

I'm exhausted, but want to post a quick update. Tomorrow is my big appointment with Barrow's. I have to say, I'm actually pretty nervous. I honestly hate explaining the twenty million details of my case to every doctor I see. I kind of feel like it's a test, as they grill me with questions, look at me critically and then cut me off if they decide my answer isn't important. And then they do a physical exam, making remarks or grunts, and never telling me what they are thinking! I'm sure the problem is that I've seen more than my share of docs! With hospital transfers, plus docs of different specialties, and their partners, I saw TEN docs at Banner Desert (two of them neurologists), FOUR docs while at Banner Baywood (two of them neurologists), and FOUR docs at Good Samaritan (one neurologist). Plus the neurologist I saw when I first got out, my PCP, and the Barrow's neurosurgeon. What is that, twenty-one doctors?? (also, throw in about nine physical and occupational therapists who have also asked for the full story and done full evaluations!) I'm exhausted even just explaining it!...i guess that accounts for how I am feeling right now. It's been too many doctors, and no answers. I keep asking what would happen if I just decided to drop out of all of this. I know that would be dumb, but it sure is tempting! I'm really hoping the Barrow's neurologist tomorrow will care about helping me, not just exclaiming over how unusual my case is. I realize I'm a hard case, but I need someone who is willing to dig in and stick with this until we resolve whatever is going on.

A few great things happened today. This morning I went to my first day of outpatient physical therapy, and it was so helpful and motivating! I have to say, the workout about did me in, but I am so excited to have such amazing equipment and therapists. It is a particular type of physical therapy (i will try to remember to explain more later) but I am pretty sure they are the only ones who can do what they will do for me. I am really excited about it! Another great thing that happened today, was that I finally got my hands on the results of my spinal tap! I heard from multiple docs in the hospital the results of the spinal tap, but nobody has been able to get their hands on that report since the very first hospital. And many docs and docs offices have tried!! The Barrow's neurosurgeon told me if we couldn't find it, we would have to repeat it! I think the spinal tap was the worst test of all! Repeating it is not on my wish list! So i drove to the original hospital where they performed the test. After half an hour of telling the records department that they still weren't giving me what I needed, they finally cut me off and said they had given me everything they have on record. They were trying to be really helpful, but they were adamant that they didn't have what I was looking for, or that it was hidden in the stack of papers they had already printed for me. I'm no doctor, and those microbiology reports are pretty complicated, but I was pretty sure I didn't have what I needed. So I was driving home, feeling frustrated, thinking of how I was likely going to need a new spinal tap, and how that would prevent the new doc from making an action plan. I just kept thinking how is it possible to lose a test like that? How would it not be on file? And I started thinking about the doc who ordered the test, and our conversation about the results....and I had a brilliant idea. I pulled out my GPS, looked him up, and drove to his practice. When I got there, his receptionist was completely unhelpful and said there was no way she could pull a hospital test for me. I decided to briefly explain how desperate the situation was, that I just needed a copy, that nobody could find it, and that they were going to repeat it if I couldn't get my hands on that report. As it turns out, one of the neurologists I worked with in the first hospital walked into the front office as I was explaining this. I have to admit, he wasn't the most helpful doc in the hospital. But for some reason, his heart must have been touched by my explanation, because he spent about 20 minutes helping that receptionist track down my test. I am still in shock that he would do that. Neurologists are known for being extremely pressed for time. In all of my medical chaos, those twenty minutes absolutely meant the world to me! Having that test in hand tomorrow when I go to Barrow's will make the meeting twice as productive as it would have been. I am so grateful. If he hadn't been there at that moment, or if he hadn't decided to help, I would still be empty handed.

After going to the hospital, I went to an assisted living center and visited one of my dear friends from the rehab unit at the hospital. He is 97 years old, and so amazing! He was telling me about being six years old and riding a horse to school. He was too little to actually climb on the horse, so his family would strap him to the horse, and send him on his way. When he had traveled a mile and a half across the prairie, he would get to school and the older kids would help him off the horse and put his horse in the stable! He told me about how his school started a hot lunch program, and on his day to bring lunch, his mom roped a pot of hot soup to the horse. He said the horse didn't like it one bit! He also mentioned a time when he got lost trying to take a shortcut, and he was pretty scared being only six. He said that smart horse finally realized they were lost, took over the navigation, and got them to the school house! Haha! He was also telling me about being a submarine tech for the Navy. His stories are so much fun, and seeing him again really made me happy.

Oh, and also, the weather today was AMAZING! It's been a really great day. I am exhausted from PT and running around, and really nervous about my Barrow's appointment tomorrow, but all in all, it has been a truly amazing day!


xoxo

Mandy

MRI pics January

A few different views of my recent MRI