Thursday, January 28, 2010
Monday, January 25, 2010
Thursday, January 21, 2010
Tuesday, January 19, 2010
I found out about my Hydrocephalus in May of last year. I finally had some answers as to why I had been having so many headaches and unbearable pain.
Sunday, January 17, 2010
Friday, January 15, 2010
Thursday, January 14, 2010
Tuesday, January 12, 2010
Monday, January 11, 2010
Friday, January 8, 2010
The surgery was supposed to be Wednesday, but was postponed, because of technical issues. The Dr. came in and apologized and told me it was all on for Thursday at noon.
Before the surgery, Sonia and I went to visit the pediatric unit here at NIH. I met with one of the ladies that may be taking my kids on, in one of the studies! They really treat their people good here, and I would LOVE for my kids to experience this!
It wasn't long after we got back, that the stretcher to take me to the surgery came for me. I put my fancy gown, and my tights on and climbed aboard my chariot!
While in the holding area....the anaesthesiologist talked to me about the types of meds he could give to me, and we opted for a "digit block". He used a local anaesthetic and injected into my fingers...numbing them...totally. Then ... slowly ...adding a relaxing medicine into my IV.
The operation started with an incision and removal of the nail. Then, the Dr hunted for the glomus tumors.
I was in 'Twilight' most of the time...talking about Red Lobster...the drifting off to sleep.
The numbing lasted all night, the pain started this morning.
I am supposed to be getting pics (we'll see)
My hand felt nothing as the procedure took place...And was bandaged up and I was wheeled back to my room. The pain meds took care of most of the pain...and I could already feel a difference in how my hands felt. AMAZING
Wednesday, January 6, 2010
I'm not that bummed about it.
In my room at 5NW I am enjoying my roommate, Sonia, who also has NF1 AND glomus tumors. We clicked right away and have been hanging out. She makes me laugh--I'm so glad I met her!
I met with a pain specialist today...We talked about my daily headaches and backpain. It was soo nice to be able to have someone who listened and really truly understood what I was saying.
Acupuncture and stress reducing therapy was noted and I will follow up with that.
Tuesday, January 5, 2010
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 :)
THANK YOU SOOO MUCH FOR ALL THE WELL WISHES AND PRAYERS!!!
Monday, January 4, 2010
Suggested screening for people with NF1 or at risk for NF1 includes:
- Yearly examination by a doctor familiar with NF1
- Yearly eye examinations, beginning in childhood (may become less frequent in adulthood)
- Yearly blood pressure monitoring
- Developmental assessments in childhood, as needed
- Other evaluations (such as imaging scans, like CT scan or MRI), as needed for symptoms
Screening recommendations may change over time as new technologies are developed and more is learned about NF1. It is important to talk with your doctor about appropriate screening tests. In some areas, comprehensive NF1 clinics may be available to help with coordination of medical care.
I will get more answers to the questions ---be sure to chk back!
Tomorrow I will be admitted to NIH and get set for the surgery on Weds!
Thank you all for your wonderful support--God Bless