Monday, January 23, 2012

Neurologist Visit

Round and Round We Go

For almost 3 weeks now I have been experiencing extreme dizziness....Dizziness to the point that I had my mother drive me to today's appointment.  That is saying A LOT!

Dr. Oh did a full Neurological exam and noted that my blood pressure was LOW- 90/56 and my heart rate was HIGH- 110 (which is weird, 'cuz I had been sitting in the waiting room for a 1/2 hour)

I haven't had an MRI in almost a year, so that was the first thing to get ordered...

The Dr. asked a bunch of questions about my dizziness, but there wasn't much to tell.  I have been dizzy 24/7, with periods where the dizziness gets REALLY bad.

Dr. Oh explained that my hydrocephalus wouldn't be getting "worse"...But the dizziness COULD be a symptom of a new tumor growing. *great*  I am familiar with the type of tumor he was talking about, since Bailey has this going on with her.


The answers with Neurofibromatosis are never clear.  Heck, the answers with LIFE are never clear.  But what IS clear, is that I am doing something.  I am not just sitting by, allowing life to continue to swing at me.  Even if nothing can be done....and NF takes my life, I will go knowing I did everything I could and lived a life that I can be proud of. 



  1. I would hope that tumor is not in your corpus collosum. When I was doing the lovastatin study at UCLA I met a women who's sister died of a tumor in that location. This women sister was about 12 when she died and died at memorial hospital in long beach California in the 1980's. Chemotherapy did not help this poor child and since I guess the blog author is religious she would like the interesting thing this dying girl said to her sister. The girl said (I would be a great teacher in heaven) as the child had the dream of being a teacher as she grow up. That same day the girl went into a coma and died of heart failure about 2 years later. A very said story. We will pray for you miss Hopkins that your tumor is not in such a vital area as that child was nor where your daughter has hers.

    1. This isn't the 1980's anymore W Ford. And while my 16 yr old daughter DOES have a tumor on her corpus callorum...I was not talking about THAT tumor....I was talking about the acoustic neuroma (which my 16 yr old also has)
      Whatever may be the cause of the dizziness will be found out...And we won't focus on the "sad stories"...Because our whole intent in regards to NF, is to go beyond the sadness and heartbreak...That it no doubt brings.

  2. Hey Krissy, no matter how bad an "NF" day I am having, I can always turn to your blog, twitter, or FB for inspiration. You are a terrific advocate, you bring strength to countless people, including me. Just want to say thanks....I don't always comment, or acknowledge, but I want you to know, I get so much for you....

  3. I came to your blog searching for answers on my dizziness, I have NF-1 as well. 37 years old, and within the last month, very dizzy. I had a bout of vertigo a few months ago and it eventually went away. Now, I feel wobbly and light headed often. What did they say about yours?

    1. The Drs said dizziness and NF go together and are very common. My dizziness is just increased because of the hydrocephalus -- Nothing drs can do - unfortunately