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I was diagnosed in January of 2009 with a brain stem glioma. At first the doctors gave me about a month. Then after further analyizing the MRI they came to the conclusion that the tumor is a slow growing astrocytoma and had probably been there for years. Radiation and chemotherapy was the plan of action. I completed 40 days of radiation and 42 days of chemotherapy. Then went to Temodar for 5 days a month for six months. Tumor has shrunk about 50%. Doctors still cannot give a definitive answer as to whether this was a benign of malignant tumor. They were not able to do a biopsy due to the tumor location and surgery is out of the question. Has anyone out there had the same experience. I am concerned about my future and whether or not I will be able to get back to work and live a normal life. Right now I am working on tapering off all the pain meds. It has been over a month since I stopped therapy and it seems like some of the old "signs" are coming back. Such as blurred vision, headaches and all over body pain. I do not know if this is withdrawal or the tumor growing again. Any advice or help would be appreciated.
It has been a couple of weeks since I posted my question and have had no replies. My symptoms seem to have leveled off but they are still prevelant. Constant body pain, blurred vision and headaches keep me at home most of the time. I cannot drive as I am afraid that my vision will elude me and do not want to put myself and others at risk. I am scared about what the future holds. This is a grade II astrocytoma located on the brain stem. Inoperable and I have been through the radiation and chemo. Doctors say I should be fine, but what kind of an answer is that? Any stories of success or failure would be appreciated. Just looking for anything to help my understand what to expect. Thank you to all. My prayers are with each and every person or family that is going through something like this.
Hi there- Well I had a grade 11 astrocytoma but it was my temporal lobe not the brain stem so I can't really compare. If you've had everything the medicos can offer then I suggest you could try a homeopathic approach which has kept my astrocytoma from re-growing even though all of the tumour could not be removed surgically.
I wish you well. You may find reiki healing helpful too- I had many sessions in the period after my surgery and also I learnt Tai chi which helped me regain my balance and physical movement (I had 7 strokes before the surgery and lost most use of my left arm)...Now, 7 years later, Its almost as good as it was before the op.
Don't give up. Be strong.
The Ian Gawler Program may also be helpful to you if you can access it.
All the very best.
Feather
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