Verse of the Day

Wednesday, October 15, 2014

Long-Awaited Update

The morning of August 18, 2014, I awoke to what I feared were new symptoms. I could barely lift my left shoulder; my hip flexor was totally weak again. My entire left side, from head to toe, were numb and weak. The only difference from the initial stroke symptoms, was that I had no vertigo or crippling fatigue. I did have new symptoms of headache and nausea. Yet, because of my history of up and down symptoms, I waited to contact my neurosurgeon.

Two weeks later, the symptoms had not improved. I could no longer ignore the possibility that something was amiss. I reluctantly called my neurosurgeon and scheduled an appointment. I waited two weeks to get into see my physician.

Dr. Willis did order a repeat MRI, which I completed on September 24, 2014.

Then I waited until TODAY, three weeks after the scan to find out the results. I must say, the wait was not easy, and I was not the model of patience.

Fortunately, although the scan shows I have swelling (Dr. Willis claims it is not true edema) around the brain stem and in other areas of the brain, Dr. Willis and Dr. Kresl (radiation doc) believe the swelling is normal for six months post- radiation. Because my doctors did not want to put me back on steroids, the doctors recommended nausea medication and non-steroidal anti-inflammatories. I will need another MRI to monitor the swelling--- probably in three to six months, depending on how my symptoms are progressing.

Both doctors said the brain stem angioma looks better, meaning it is scaring properly. I have had no additional bleeding.

Dr. Willis also took me off of Vimpat. He said that without a documented seizure, he had to advise me not to take the medication. I had started have significant side effects from the medication, and he felt this would only impede my neurological recovery.

Bottom line: Time will tell if my symptoms will improve or vanish. I am almost at the one year mark since my initial brain stem hemorrhage. Indeed, life has improved. The vertigo and anxiety have significantly lessened. I am stronger and more confident, due to working out five days a week and continuing my vestibular and physical therapy.  Emotionally and spiritually, I'm stronger. I guess if I look at the big picture, I have improved an incredible amount. I think it is just the human in us that simply wants a pain-free, perfect life.

All in all, my news is good. The only bad news I can find in all of this is recognizing that I may forever have up and down symptoms. Since radio surgery does not remove the lesion, this nasty angioma will continue to rub up against different areas of the brain stem. Some days are okay; some days all I can do is sleep. I am still struggling with the reality of brain stem cavernous angioma.

I have considerably more empathy for those people with chronic disease. I understand when people describe their lives in terms of a date--- a life pre-stroke, and a life post-stroke. I understand how all of life can take such a drastic turn in an instant. While it remains a challenge to not let an event define my life, I find comfort knowing that the Lord has a purpose in all of this. I can't say that I know what the purpose is, but I am striving to continue His work while I am still on this earth.

My daughter, who also had radio surgery for a brain stem angioma, is just over three months post-radiation. Thankfully, she has had no neurological symptoms. She remains quite tired, and somewhat downcast. We can only hope that time will help her recover her positive and joyful disposition.

I appreciate the continued prayers of my friends and family. Thank you.