Tuesday, January 5, 2010

Tuesday Update

Man, I slept good lastnight! So good, I slept right through the alarm that was quietly trying to buzz me awake. I checked out of the hotel this morning and waited in the lobby for the NIH shuttle to come pick me up.

I raced to make my 7:45 appointment and got my IV....

An MRI of my left foot was hopefully going to pick up the reason why my left toe is in so much pain. I always find it funny, how when you are told to NOT move something or to stay still...all you can think about is moving. :)

The MRI of my toes was difficult--"Reeeeee*Clunk*CLANK CLANK CLANK" I kept wiggling my toe and they had to take several of the images over again (grrrr)

Anyways....after the MRI, I headed to the cafeteria for some "atkins friendly" eggs and bacon. YUM!

I met with Dr. Moshyedi and Dr. Stewart about my surgery and the MRI findings. The MRI did pick up the tumor in my left hand, but the findings on my right hand and foot didn't show any significant issues. (even though I have severe pain)

The Drs described the surgery and I DID ask for pictures--so stay tuned!

And I did ask s'more questions:

*How often should people with NF have MRI's? Should everyone be given a baseline MRI?
----Unless the person is showing symptoms, or signs of issues...No "baseline" MRI is necessary. If a person has had a baseline MRI, future MRI's are not needed, unless there something found.

*What are the best pain meds for NFers?
----Neuropathic pain meds are the best.

----There are several that work well....some need to be tried to see if the work FOR YOU

*Hormones causing tumor growth?
----It has be known that pregnancy and menopause do cause tumor growth. And also for men, puberty is a known time for the onset of tumor gorwth.

*As for hystorectomy's usually a low dose hormone replacement is given.

*I asked about scalp neurofibromas and the best way to remove more than one tumor....
---If the tumors become painful, they are fairly easy to remove.
As for removing more than one....It's up to the DR, but surgerical removal seems to be the favorite option. Where the Dr cuts the whole tumor out. Several can be removed at once.

*Chances of adults developing brain tumors?
---NF is progressive, so it's possible.
(Me personally developed a brain tumor as an adult)

*Best treatment for plexi's?
----Depends on the DR. Debulking usually becomes necessary (surgery) Chemo is usually NOT an option, unless the Drs feel it necessary. ( I know this is vague......but I think the Dr was getting kinda tired of the questions )

-----The other questions that were asked about specific children and NF complications....I have the DR looking at these questions, and HOPEFULLY he will come back with some answers..(Stay tuned)

I am in the hospital right now...in my hospital bed. Surgery is set for tomorrow morning. I will update when I can :)



  1. Thank you for the update. Keeping you in prayers. Raean from Facebook

  2. Kristy, good luck tomorrow. My MRI's with Dr. Stewart showed the same nothing,but I still have pain in my fingers, and on the MRI the finger where they did find a tumor does not really have any pain.

    ~Leslie from Facebook and Inspire