Verse of the Day

Wednesday, July 30, 2014

Lots of Tests

Since my last post, much has transpired. Fortunately, most events and happenings have been positive--- or at the very least, informative.

I had an ACTH Stimulation test to measure my body's response to cortisol. The test was important, as it would determine if my body's adrenal function had returned to normal following heavy steroid use. Unfortunately, my "levels" were too low; I have to remain in 4 m.g. of Prednisone for a while longer. I honestly feel better, energy-wise, while on the Prednisone. The only disappointment I have on staying on the medication is that my weight has not gone down at all.

Also recently, I met with a genetic counselor through the Virginia G. Piper Cancer Center. Initially, the counselor was a bit confused by my referral--- most of the patients she sees are cancer-related referrals. I think my case actually interested her! She spent over an hour answering my questions regarding CCM, and even made sure I had at least some basic understand of how genetic mutations occur. My counselor then gave me a kit (Gene Dx) to take to a nearby lab. I should have the test results in 6-8 weeks.

I felt it was important to go through with genetic testing so that doctors will know the specific gene responsible for my cerebral cavernous angiomas. That way, I can hopefully participate in future research or drug trials for "my type" of mutation.

When I return for my results, I will most likely take my oldest son in for testing. He is the only biological child who has no lesions on MRI; he wants to know if he has the mutation. We will most likely also have our symptomatic children tested--- just to have the information. You never know when this information may prove helpful.

The most disconcerting aspect of genetic testing is understanding that since it is an autosomal, dominant mutation, my (possible future) grandchildren each will have a 50% chance of having this disease. The genetic counselor suggested that the only way to circumvent the disease cycle is to not have children (and adopt), or to have in-vitro fertilization.

Initially, I thought of "how cool" it was that an embryo could be tested for the mutation and then implanted in the mom if the results were normal--- but the thoughts of what would happen to that embryo with a mutation seems too difficult to contemplate. Basically, you would allow the healthy embryo to live... and then let the unhealthy one die. I am all for avoiding disease and for making wise decisions, but IVF comes with serious moral considerations. I am so thankful I will not have to face this personal decision. I have already started praying for the health and safety of any future children in our family. These are sure tough issues.

In other family news, my youngest biological son's cervical and thoracic spine MRIs came back clear.  Praise the Lord! I cried many happy, thankful tears that he will not have to manage additional serious lesions. His cerebral lesons will be enough to contend with.

In other medical news, I need to go in for an EEG. My history seems to indicate that I may have experienced several partial seizures due to the lesions in my temporal lobe. Even if my EEG in "normal," my neurologist (Marisa Sosinsky, M.D.) recommended that I still go on anti-seizure medication. She said that with all the lesions in my brain, whether or not I will have a seizure is not if, but when.  That didn't sound too encouraging to me; I will be starting with a new drug called Vimpat soon after my EEG. I'm not too excited about medication, but I do understand the necessity of trying to remain seizure-free; I have too many lives depending on mommy's safe driving.

And finally... one more interesting and positive event-- vestibular therapy (Valley Physical Therapy). I have been going to therapy now twice a week for the last several weeks. I also "work out" at home or at the community pool on the days I don't go in for therapy. The vestibular therapy has significantly reduced the number of random dizzy spells I was experiencing. While my vertigo has not disappeared, it does seem that the frequency and intensity of vertigo has diminished. The ability of the brain to change and adapt is truly marvelous!

I am also doing some other "regular" physical therapy for my weak left side. This work has absolutely improved my balance and overall look out on life. I am much more confident on the stairs, and seem to be having more "good" days. I am encouraged. I feel that I am adapting to the numbness and learning to trust my body to do what it is supposed to do (even if I can't feel it). So strange, but good.

Finally, my daughter had her one month follow-up for her brain stem Cyber Knife radio surgery. She is doing well, although she is still quite fatigued. Dr. Kresl did recommend that we closely monitor my daughter's thyroid levels in case the surgery or the steroids affected her levels. We are encouraged by her recovery.

It has been a very busy, informative time for us. God-willing, the crises will settle and we can find a "new normal." God-willing.

Monday, July 14, 2014

Phoenix Cyber Knife Follow Up

Today was my 3 month post radio surgery follow up.

My MRI is unchanged, as I reported in another blog post. However, I am continuing to have a multitude of neurological symptoms--- anxiety, dizziness, vertigo, headaches, numbness, weakness, fatigue, and occasional swallowing issues. Dr. Kresl reassured me that these symptoms are normal; I can expect my symptoms to be very up and down for the first year following radio surgery. He did refer me to an neurologist to do some further testing, but did not seem alarmed at any of my symptoms. Knowing that my response to radio surgery is not unusual is very comforting! I do not need to have another MRI for 6 months.

Dr. Kresl did refer me to Valley Rehabilitation for vestibular therapy. Hopefully, I can find some improvement of the dizziness and balance issues I'm experiencing.

I also got a referral for genetic testing. I want to have this information so that I can be a possible participant in future medical treatment/drug testing. Because there are at least 3 genes responsible for the cavernous angioma mutation, it is critical to know which gene I have so that I can be "paper ready" for any future trials. This is also good information for the kids to have--- not that I want them to live in fear, but I want them to be armed with information so that they can make good decisions regarding their health. My job will be to help the kids figure out what to do with test results. I don't look forward to this particular job as a parent.

I am still waiting for ACTH Stimulation test results. This is a test to evaluate my adrenal function and help my endocrinologist determine if I can safely come off the steroids.  I am so ready to be off of Prednisone!

And finally... our daughter is doing very well after radio surgery. She has been off steroids for 4 days and has some fatigue, but has no headaches or anxiety. She will need some blood work this week to check her adrenal function (she has Hashimoto's just like momma). She's a real trooper! I sure am proud of how well Miss T. is handling such a major health issue. She has grown up considerably in just a few months. I guess difficulties do make us stronger....

Tuesday, July 8, 2014

MRI Update

No, this is not me in the tube... but I always like to have some photo to share!

Yesterday I had my first post-radio surgery MRI. To my surprise, I received the results within hours (thank you, Valley Radiology!).

The MRI showed no change--- which is good! No new bleeds and no edema. Scan-wise, this is the absolute best result imaginable.

So why do I feel sad? It is the reality of my situation. I need to accept a new normal, yet I'm in partial denial. My lack of physical ability does not greatly trouble me; I can accept not being able to run or be some superstar athlete. And I'm learning to not trust my left hand so much anymore (I've dropped my new phone about 8 times in the last few weeks). I have embraced the microphone feature on my cell phone (I am no longer "text" challenged). I have even started working out again to make myself stronger and more coordinated. It is just that brain injury takes so much longer to heal than I want to admit.... I don't want to have constant challenges define me.

My husband was saying just this morning that when he had ACL surgery on his knee, it took him a full year to recover. He says I'm just not being realistic to think that I would feel better in just 8 months after major brain injury. Unfortunately, I could only respond by crying. It is difficult to realize life is indeed very different, and may never be the same again.

The "favorable" MRI also told me that my cascade of symptoms may be my constant companion--- a condition to somehow learn to ignore or put on the back burner so that I can cope with daily life. It is a daunting task for someone so cognizant of bodily and emotional concerns to just learn to ignore feelings. How do I learn to ignore feelings, but at the same time be aware of symptoms that are potentially life-threatening?

I know my thoughts are not unusual for a sufferer of cavernous angioma. Most of us have not been able to find a anyone who can discuss what symptoms are "normal" or expected, and what symptoms ought to be evaluated (other than an obvious symptom like a seizure, etc.). Cavernous angioma patients experience such a plethora of symptoms that it remains difficult to separate out what is disease-related and what is not. Seriously, are there no neurologists who understand this disease? I have learned more about this disease and what to expect through Angioma Alliance and though a couple of private Facebook groups (Cavernoma Support Group and Stemmies).

I find I am in a new stage of life's journey. Oh, Lord, what are the lessons you want me to learn? What are you trying to teach my family? In retrospect, I was pretty arrogant to think I had a handle on God's sovereignty. I intellectually understood God's absolute and total control of all aspects of life. After all, I've read lots of theology books and completed countless Bible studies. But personal suffering is a different teacher. It is entirely another issue to deal with His sovereignty head-on... face-to-face.... It is then that the struggle to trust becomes an hourly battle. Will I trust Him when I can't be the mom I used to be? Will I trust Him when my symptoms interfere with my agenda?  Will I trust Him when my kids get diagnosed with a potentially devastating disease?

As a family, we studied Psalm 46 last night. Such a beautiful and encouraging Scripture--- and perfect timing, as usual. God is our refuge and strength... and I need to learn to "cease striving" (verse 10). It is a process. He is God, and I am not. I don't have to like what He chooses for me, but I do need to learn to accept His plan with maturity and grace. He is my stronghold. Pray for me and for my family.

Psalm 46 New American Standard Bible (NASB)

God the Refuge of His People.

For the choir director. A Psalm of the sons of Korah, [a]set to Alamoth. A Song.

46 God is our refuge and strength,
[b]A very present help in [c]trouble.
Therefore we will not fear, though the earth should change
And though the mountains slip into the heart of the [d]sea;
Though its waters roar and foam,
Though the mountains quake at its swelling pride. [e]Selah.
There is a river whose streams make glad the city of God,
The holy dwelling places of the Most High.
God is in the midst of her, she will not be moved;
God will help her [f]when morning dawns.
The [g]nations made an uproar, the kingdoms tottered;
He [h]raised His voice, the earth melted.
The Lord of hosts is with us;
The God of Jacob is our stronghold. Selah.

Come, behold the works of the Lord,
[i]Who has wrought desolations in the earth.
He makes wars to cease to the end of the earth;
He breaks the bow and cuts the spear in two;
He burns the chariots with fire.
10 [j]Cease striving and know that I am God;
I will be exalted among the [k]nations, I will be exalted in the earth.”
11 The Lord of hosts is with us;
The God of Jacob is our stronghold. Selah.

Tuesday, July 1, 2014

Emotional Lability

One minute I'm laughing... the next minute I'm crying uncontrollably. Emotional lability after stroke is more common than I knew. According to the 2010 National Stroke Associate Survey, 53% of stroke survivors experienced PBA(Pseudo Bulbar Affect).

At home, my kids just think my behavior is rather entertaining. One of my kids will crack a joke, and suddenly I'm laughing so hard I nearly wet my pants. But then sometimes the laughing turns to crying... and then I start sobbing. Horrible, guttural sobs just wrack my frame. It's hard for me to stop the tears. And I don't feel depressed; this is not about depression.

I can also cry uncontrollably with something that is only a little upsetting. At home, I usually don't embarrass myself. I can isolate myself in the bathroom and talk myself through the episode. But get me in church, and the emotional wheels just fly off. In the last few months, I have not managed to get through one service without crying. It is all rather embarrassing, but it can also be very distressing (and quite distracting of those around me). It is difficult to get your heart into worship and focus on the Lord when a flood of tears starts gushing out of your eyes. And to try to think of something else (try to get your mind distracted so that you can try and stop crying) defeats the purpose of worship. I am there to worship and attempt to get my mind off myself.

Such are the trials of a stroke survivor. So irritating.

For more information on this topic, see for more information. This page also has a questionnaire so that you can evaluate your symptoms; it even allows you to print the results of your questionnaire so that you can take it in to your doctor. I'll be talking to mine soon.