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Old 11-17-2010, 08:42 AM   #1
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brain stem glioma

I have recently been diagnosed with a brain stem glioma in the cervicomedullary area and central vestibular dysfunction. My symptoms are vertigo, nausea, trigeminal nerve pain, and migraines.

I was scheduled for a biopsy of the tumor and then it was postponed until I am seen by the neruo ENT. I am not clear why that desicion was made. Not even sure what the treatment for the CVD would be

I was just hoping to hear from anyone who is suffering from CVD caused from a brain stem tumor. Or any info, advice of any sort.

Jessica

Last edited by gijam; 11-17-2010 at 08:43 AM.

 
Old 12-07-2010, 05:09 PM   #2
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Re: brain stem glioma

I worked with a boy who was diagnosed with a brain stem tumor, not quite the same type as yours, when he was 13. It was very intertwined in the brain stem, so not operable. He had radiation and chemo, and though he has physical challenges now, those may or may not happen to you. Much depends on the type of tumor, where it is exactly in the brain stem area, etc.

I think it's good that a neurosurgeon is doing the biopsy. The brain stem is a very touchy area, so you need someone who is a specialist in that type of surgery.

 
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Old 12-07-2010, 06:15 PM   #3
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Re: brain stem glioma

Thank you for your information. Now the Doctors have decided it would be to risky to do a biopsy and now want to proceed with Radiation and possibly Chemo. They are seem to think that this is a ependymoma.

Jessica

 
Old 02-23-2011, 11:02 PM   #4
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Re: brain stem glioma

Please let us know how you're doing as your treatments progress.

 
Old 02-25-2011, 01:27 PM   #5
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Re: brain stem glioma

Sorry for not updating sooner, just been through a long process.

I was being treated at one facility that was not comfortable doing a biopsy on my brainstem. So they were going to proceed with Chemo and Radiation. I was a little concerned moving forward not knowing what exactly we were dealing with.

I contacted Dr. Henry Friedman at Duke university on Dec 17th via email, he later contacted me by phone that evening and suggested that I not start treatment until he has seen my scans/MRI's. I overnighted all my scans and med records and the morning of Christmas eve he called and said that he had one of the best neurosurgeons in the world, Dr. Allan Friedman and they would be able to help me. I traveled from MO to NC for a consulation and then had a craniotomy on Feb 3rd. with Biopsy. He was only able to get enough tissue for biopsy as the tumor had infiltrated normal tissue.

The pathology reports have come back a little vague. So at this point they think the lesion is from an old infection or the start of an early tumor. So treatment at this time is to watch and wait and repeat the MRI in 6 Months and to start vestibular rehab to help with my symptoms. I will be traveling back to NC in about 3 weeks for my 6 week follow up from the craniotomy.

Recovery has been pretty good, I do have trouble walking now and numbness in my right leg, which are new sypmtoms after the craniotomy. I still have the symptoms I was having prior to the craniotomy which are blurry/dbl vision, Nausea vomiting, and Headache.

I am thrilled to have found Dr.Friedman since if I had followed the first treatment plan I would have undergone Chemo and radiation and at this point is unneccesary.

I am still in the recovery process and I feel very blessed. Hopefully this let others know that there are other doctors that are out there that can help not all surgeons are at the same skill levels as other. I appreciate my first Doctor telling me she was not comfortable biopsing the brain stem however I wish she would have tried to refer me to a more skilled surgeon instead of wanting to proced with chemo and radiaton.

I will keep you guys updated


Hope and prayers
Jessica

 
Old 03-02-2011, 06:36 AM   #6
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Re: brain stem glioma

Do not wait. At least have mri's every three months. If anything
new develops go at once to the closest hospital. Increased cranial pressure can kill quickly. Anaplastic transformation happens rapidly, when it does happen, and can be fatal in months. Do the stroke symptom check daily with a friend or family member. Have them check to make sure your eyes are closing when you try to close them. They need to watch you walk to see if there are any changes in your gait. If you start dropping things or saying 'what?' in conversations, report it to your Doc.

My son in law is dealing with this, and it has been the most horrible thing I have ever been exposed to. I cannot begin to imagine the anguish he and my daughter are living with.

God bless you and hold you close.

 
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