Proton therapy?

Discussions about the illness, treatments, doctors, etc.

Proton therapy?

Postby michael42589 » Fri Aug 09, 2019 4:41 pm

So, I was reading up on this condition on rarediseases.org and seen where it says patients with Familial CCM it ius not recommended to do radiosurgery. After looking up radiosurgery, linear accelerator, or new shaped beam techniques are controversial treatments. It seems proton therapy falls under that category. I have 12 angiomas and its familial. One of the tumors in the sub-cortical white matter on the right side of my brain has and is continuing to grow, but due to its location so close to a major artery I was left with two options just a day before surgery. Option one was to continue the lesser route with increased chance of having a stroke on the operating table and keeping the function of my left arm or option two was to take the longer route which decreased the chance of stroke but would leave me paralyzed in the left arm. So my neurosurgeon suggested we try an alternative treatment, that was experimental in his suggestion. He's a good neurosurgeon completely aware of the condition as he has done operations on my grandmother and read the article of the research yale did on my family. But he suggested proton therapy to eradicate the angioma. Again it is a form of radiosurgery, so im curious if this is something I should do? Has anyone done proton therapy to remove an angioma before and what was your experience?
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