Wow this forum is really helpful. My mother is going to have a GK On Jan. 17 here in Manila, Philippines. Her tumor is around 2.8cm. It had been the worst year for my mother and we just learned that she has a tumor last December.
Let me share my mother's story as background (Sorry this is long):
Her case started with pain in her gums starting last June 2013. We thought it's a dental problem since she's been wearing dentures since she was 20. She also had all her teeth removed 6 months prior to June so we thought the pain might be caused by that. As months went by she couldn't eat well anymore. Everytime food touches her right lower gum, she would feel a shooting pain like being hit by electricity. Dentists said it's because her gums were too thin already and the nerve under it is already too sensitive.
Eventually we went to a gum expert (periodontist) who said that my Mom's problem isn't dental. That time, my mother would not eat at all anymore. Even just opening her mouth is already too painful for her. During that time, she has already lost around 10kg and is already becoming alarmingly thin.
We then went to an ENT because the Periodontist thought it might be neuralgia. The ENT initially thought it might be Herpez Zoster and gave medication. It's a set of really expensive medicines including neurontin. After 2 weeks of medication, the pain went away. But after a week being pain-free, it all came back with vengeance. It became more painful. I saw my mother's face suddenly becoming all red with pain. I could see tears from her eyes as she endures the pain each time it attacks. As a daughter who can't do anything but watch, it was really heartbreaking.
So for months, doctors will give my mom anti-convulsant medicines. Each time there is a new medicine to try, my mom would always be bed ridden for a week or so since she gets dizzy with the meds. She will not be able to eat that much during that time since she feels like throwing up each time. She tried Lyrica after Neurontin and now she's on Trileptal. It even came to a point when we had to rush her to the hospital because she again could not eat or drink for several days because of the pain. We had to keep her for a week in the hospital so that she can get IV. At present, she has already lost around 15kg.
A family friend then referred us to a neurologist who said that it is indeed trigemenal neuralgia but it's best to have an MRI just to be sure there isn't any tumor. And so we had MRI done on my Mom. We did not read the result after it was given to us. We went straight to the doctor and he was the one who told us the news that there is a tumor. He told us the options , he said we can have it surgically removed or have Xknife or Gamma Knife done on her tumor. In the Philippines, only one hospital has facilities for Gamma knife and 4 major hospitals has the Xradiation Knife procedure. He said the decision is up to us but we can't wait too long since the tumor is already at 2.8cm. Once it gets bigger than 3cm, some doctors won't do Gamma or Xknife anymore.
After several consultation with different doctors, we decide to go for Gamma Knife ( This is because one neurosurgeon told us the location of the tumor is too deep and that surgery is too risky).
Right now I am reading online about people's experiences on Gamma Knife. My Mom is just desperate to be healed and I do not know how to support her after the procedure. This forum is really helpful because it somehow gives me an idea of what she will experience after.
I hope everything goes well with everyone.
God Bless!
-Mel
