Neurosurgeon Consult and new MRI

I met with a nurosurgeon yesterday for a biopsy consult. I also had an MRI, so it was a busy day.

Dr. Nakaki (the neurosurgeon) says this is definitely a suspicious lesion, and that a biopsy may be the only way to really know what it is. He says every time he looks at it (he's been in the loop since January), he's tempted to get a piece of it so we can know for sure. But he said we still need to keep a biopsy as a last resort because its in a very bad spot, deep in my brain, in an area that I use every day. Getting a piece of it could cause permanent damage. He is going to talk to my neurologist and see what they both think, and at what point we should decide this is suspicious enough to risk the biopsy. We may actually be to that point, since we've been waiting six months for this to improve, and its only gotten worse. Sadly, the MRI happened after our meeting, so we couldn't discuss it, but the surgeon promised to pull it up and take a look at it before consulting with my neurologist.

He did explain the biopsy process and protocol. He showed me the size of sample he would take...about 1/4 the size of what he normally takes, he said. It will come right out of my "motor strip" so they would have to work with a smaller sample. The surgeon said one of the biggest risks of any biopsy is not getting any answers. But he said in my case he actually feels pretty confident we'd get an answer. Not sure why he feels that way, but I hope he's right!

We haven't made any decisions yet. He and my neurologist are going to collaborate on next steps. I did look at my MRI films when I got home though. I'm no radiologist, but its pretty clear that not much has improved, if anything. It is still enhancing strongly with contrast (this should have resolved about five months ago), and the primary (39mm) lesion actually looks like it's grown. But that could just be the positioning of the MRI cuts. I'll have to wait and see what the official report is.

Thanks to all of you for your prayers, suggestions, and support. It really does help. I'll post an update after next week's appointment with my neurologist. Until then, I am praying hard that I will feel what the best steps are...there are too many factors involved here, and despite all my research...nothing about my case makes sense. My doctor is one of the chief neurologists at Barrow's and even he is baffled by all of this. Whatever step we take next is our best guess at the right thing. So for everyone who believes in prayer....please pray that my doctor's and I will be guided in the right direction, and that we will feel peace about it.

Love and thanks to all!

Mandy

Treatment Not Approved

The recent downturn has been rough, and I still haven't recovered. In the first week home from the hospital, we nearly returned twice. But sadly, we've run every test, and until the next MRI, we don't really have any new information to act on. My insurance has not yet approved the Tysabri, so I have not started my new MS treatment. The insurance is pushing back because it's an aggressive, expensive treatment that is usually reserved for several years into an MS diagnosis, after other treatments have stopped working well. Sadly, I'm already at the point where regular treatments aren't working, and we are anxious to protect my brain tissue.

One of my more serious symptoms has been pressure in my head (not migraines, just severe pressure). We finally found a medication that helps, but sadly, it has some nasty side effects, including persistent tingling of my hands/feet and face, stomach aches and severe nausea. The doc says I just have to deal with it because the medication is essential right now.

In other news, my job finally had to let me go. I couldn't be there, and they have given me every scrap of leave possible. I honestly was heartbroken, though of course I understand. It is a really disappointing and disorienting feeling losing a job because of an illness. I never thought it would come to this. I honestly loved working at Yodle, and I miss all my friends there. I was loving being back to work, even though it was making me sick. I was fighting for the chance to feel normal again, and I feel pretty defeated to realize that I couldn't make it work. The good news is that Yodle says they will hire me back as soon as I'm feeling healthy and strong again (sadly, I have no idea when that might be. If I couldn't pull it off after five months of fighting to recover, who knows where this is all headed). In the meantime, I get to learn about new things like disability benefits, expensive insurance, and budgeting without a budget!

Despite feeling horrible for months, and losing my job, I can honestly say, that recently I have had some of the most amazing witnesses of God's love. He has answered my prayers in very direct, personal ways. Realizing how much he loves me, and how much he knows me and all that is happening...how could I be afraid? I have absolutely no idea where this is all headed, or what my future holds, but I do trust God. I know he loves me, and I know that there is a purpose for all we go through in life, even if it's simply to learn.

Thanks to all for your continuous love and support, and especially for your your prayers. Thank you to my family and extended family for their recent fasting in my behalf. The trial has not been taken away, but the burden in my heart has been made much lighter, and I am truly grateful.

All my best,
Mandy


"When suffering, we may in fact be nearer to God than we've ever been in our entire lives. That knowledge can turn every such situation into a would-be temple.

Regarding our earthly journey, the Lord has promised, "I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up" (D&C 84:88). That is an everlasting declaration of God's love and care for us, including—and perhaps especially—in times of trouble."   

Jeffrey R. Holland, "Lessons from Liberty Jail," Ensign, Sep 2009, 26–33