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Low-grade brainstem (pons) glioma?

RMBNT
Posts: 1
Joined: Oct 2017

Hi,

I'd like to ask if anyone here had a similar experience. 

My wife is 24 and she has done an MRI scan in July, because of some mild tinnitus. The scan showed a structure in the brain-stem, pons area, 12x7mm.

The first neurosurgeon we consulted said that it's inoperable and that it's basically a death sentence. We have consulted another specialist which told us that he can't tell what it is, and that we have to do another MRI. So we did one after 3 months. The tumor has not grown, as we've been told by the radiologist, and my wife has no physical symptoms or discomfort whatsoever. Right now we are waiting to do spectroscopy next month. The neurosurgeon we consulted says it can either be something she was born with, or a low-grade glioma. He also said that it's definitely too risky to do a biopsy, so spectroscopy (MRS) is the best we can do.

Honestly, I don't know what to do. I've read that radiotherapy can't treat this, and it's just a half-measure, which will not treat the tumor. Is there any possibility that this thing will just not grow and stay where it is? Does anyone here know a similar case? We've just got married in August and this all feels like a really bad nightmare. Both well-educated and with seemingly dream life ahead of us, and now it's all fallen into pieces. It's just so unbelievable.

 

Jtutygrs
Posts: 1
Joined: Oct 2017

I was diagnosed with a Techno plate glioma in my brain stem June 1990.  I had a ventricular peritenial shunt installed into my third brain ventricle to help the cerebral spinal fluid to drain.  My tumor was blocking the drainage causing hydrocephalis. I went 9 years with no problems. 5 weeks after my second child was born my tumor started growing.  I had a full dose of Radiation to my brain and my tumor has been stable since.  Most my issues remaining are effects from the radiation and structures effected from the location of the tumor, at this point all manageable.  I see a Neurosurgeon at UCSF California. After 4 Dr. in my local town told me that my tumor was inopererable my surgeon in Cali informed me that they can do surgery and there is always gamma knife. We have not had to explore this option up to this point.  This can be a managable thing.

Good luck and get second and third opinions if needed! 

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