#MayoClinicNeuroChat on Brain Tumors

Fri, Feb 3, 2017
9:30am to 10:00am ET

Description

Dr. Bernard Bendok, neurosurgeon, and Dr. Sujay Vora, radiation oncologist, at Mayo Clinic in Arizona talk about:

Location

Online

@lindalb

I am registered. My questions for the Drs
1). Do you have a interventional Neuro radiologist that has experience doing Meningioma brain tumors embolization as stand alone treatment for tumors that are too dangerous for surgery or radiation. My tumor location is cerebello pontine angel right side extends along the foramen jugulars towards caudal andvparcisl growth in sinusvsigmoideus on right side. My tumor was embolized (95% of feeders) in 2012 at University hospital in Zurich by a interventional Neuro radiologist. Tumor shrunk 20% and no new growth. prof Valavanis has been very successful at this I am watch & wait if tumor starts to grow or new feeders developed I will need tumor embolization again. I now live in Ft Lauderdale permanently so I need to find a Dr in USA with experience at this. Seems not well known here in USA or I just have not found right Drs? Can you help me. Thank you.

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Hi @lindalb,
We are following up with questions that didn’t get answered during the live event and will post the answers here.

Liked by lindalb

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Hello everyone, I am on Hawaii time and therefore missed the live event. Since @colleenyoung said we could ask ? off the live feed , I would like to ask what are the health risks of contrast for those of us with long term watch and wait tumors that have MRI’s with Contrast on a yearly basis for many years?

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Very good question I’m a long term watch and wait tumor too do very interested in this answer

Liked by Lindajean

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Hi, can you tell me if their is any new procedure,or treatment for patients that have PITUITARY Adenoma. My husband was diagnosed, but he is not ready for surgery.

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@dmedina71

Hi, can you tell me if their is any new procedure,or treatment for patients that have PITUITARY Adenoma. My husband was diagnosed, but he is not ready for surgery.

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That is a great question, There was Q&A on Pituitary Tumors with Dr. Bendok, Dr. Cook and Dr. Porter:

Live Q&A on Pituitary Tumors with Dr. Bendok, Dr. Cook and Dr. Porter.

Posted by Mayo Clinic on Monday, December 19, 2016

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@lindalb

I am registered. My questions for the Drs
1). Do you have a interventional Neuro radiologist that has experience doing Meningioma brain tumors embolization as stand alone treatment for tumors that are too dangerous for surgery or radiation. My tumor location is cerebello pontine angel right side extends along the foramen jugulars towards caudal andvparcisl growth in sinusvsigmoideus on right side. My tumor was embolized (95% of feeders) in 2012 at University hospital in Zurich by a interventional Neuro radiologist. Tumor shrunk 20% and no new growth. prof Valavanis has been very successful at this I am watch & wait if tumor starts to grow or new feeders developed I will need tumor embolization again. I now live in Ft Lauderdale permanently so I need to find a Dr in USA with experience at this. Seems not well known here in USA or I just have not found right Drs? Can you help me. Thank you.

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When do you think I can expect an answer that my questions? Thank you

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@lindalb

I am registered. My questions for the Drs
1). Do you have a interventional Neuro radiologist that has experience doing Meningioma brain tumors embolization as stand alone treatment for tumors that are too dangerous for surgery or radiation. My tumor location is cerebello pontine angel right side extends along the foramen jugulars towards caudal andvparcisl growth in sinusvsigmoideus on right side. My tumor was embolized (95% of feeders) in 2012 at University hospital in Zurich by a interventional Neuro radiologist. Tumor shrunk 20% and no new growth. prof Valavanis has been very successful at this I am watch & wait if tumor starts to grow or new feeders developed I will need tumor embolization again. I now live in Ft Lauderdale permanently so I need to find a Dr in USA with experience at this. Seems not well known here in USA or I just have not found right Drs? Can you help me. Thank you.

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Linda, we’ll post the answers early this week.

Liked by Lindajean

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@cleahy85

Hi! I would like to know if either doctors have had experience with treating polycystic astrocytomas in adults? I would also like to ask Doctor Vora if he has treated a third ventricle tumor? Would he use proton radiation?

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@cleahy85 Drs Vora and Bendok addressed your question at minute 25:00. I paraphrase here:

“Each case is individual. Some polycystic astrocytomas can be cured by surgery. When the tumor cannot be completely removed, the proton radiation can be considered in some situations. It is important to study the patient’s entire story and all imaging to determine the best treatment plan.”

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@irishel

I have a 3.5 cm meningioma with mass effect on my brainstem and sits 1mm from my optic nerve. This was discovered as a result of trigeminal nerve pain in my jaw. I underwent 6 weeks of IMRT 5 years ago. My question is what if any long term effects from IMRT are there–and what if anything can be done to avoid them?

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Hi @irishel,
Here are some resources about brain radiation side effects
– Oncolink http://bit.ly/2lMl78j
– Cancer Research UK http://bit.ly/2lg01lG

What long term side effects, if any, have you noticed?

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@lindajean

Hello everyone, I am on Hawaii time and therefore missed the live event. Since @colleenyoung said we could ask ? off the live feed , I would like to ask what are the health risks of contrast for those of us with long term watch and wait tumors that have MRI’s with Contrast on a yearly basis for many years?

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Hi @lindajean and @lindalb,
This study reviews the “Safe Use of Contrast Media: What the Radiologist Needs to Know” http://pubs.rsna.org/doi/full/10.1148/rg.2015150033

Have you spoken to your radiologist about possible long-term side effects?

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@lindalb

I am registered. My questions for the Drs
1). Do you have a interventional Neuro radiologist that has experience doing Meningioma brain tumors embolization as stand alone treatment for tumors that are too dangerous for surgery or radiation. My tumor location is cerebello pontine angel right side extends along the foramen jugulars towards caudal andvparcisl growth in sinusvsigmoideus on right side. My tumor was embolized (95% of feeders) in 2012 at University hospital in Zurich by a interventional Neuro radiologist. Tumor shrunk 20% and no new growth. prof Valavanis has been very successful at this I am watch & wait if tumor starts to grow or new feeders developed I will need tumor embolization again. I now live in Ft Lauderdale permanently so I need to find a Dr in USA with experience at this. Seems not well known here in USA or I just have not found right Drs? Can you help me. Thank you.

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Hi @lindalb, Drs Bendok and Vora spoke to your question about embolization as a standalone treatment at minute 21:00. I paraphrase here:
“Embolization is used as an adjunct tool in a treatment plan. But on rare situations where embolization can be used on its own.”

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@lindalb

I am registered. My questions for the Drs
1). Do you have a interventional Neuro radiologist that has experience doing Meningioma brain tumors embolization as stand alone treatment for tumors that are too dangerous for surgery or radiation. My tumor location is cerebello pontine angel right side extends along the foramen jugulars towards caudal andvparcisl growth in sinusvsigmoideus on right side. My tumor was embolized (95% of feeders) in 2012 at University hospital in Zurich by a interventional Neuro radiologist. Tumor shrunk 20% and no new growth. prof Valavanis has been very successful at this I am watch & wait if tumor starts to grow or new feeders developed I will need tumor embolization again. I now live in Ft Lauderdale permanently so I need to find a Dr in USA with experience at this. Seems not well known here in USA or I just have not found right Drs? Can you help me. Thank you.

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I had two questions, the second was if you have a interventional neuro radiologist who is experienced doing embolization as a stand alone treatment? Or do you not do this. I do understand that more often embolization is used as a pre treatment for vascular brain tumors before surgery. My question does Mayo have a interventional neuro radiologist with experience doing embolization of tumors that are not options for surgery or radiation? If so how much experience does he/she have with this? Thank You.

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@lindalb

I am registered. My questions for the Drs
1). Do you have a interventional Neuro radiologist that has experience doing Meningioma brain tumors embolization as stand alone treatment for tumors that are too dangerous for surgery or radiation. My tumor location is cerebello pontine angel right side extends along the foramen jugulars towards caudal andvparcisl growth in sinusvsigmoideus on right side. My tumor was embolized (95% of feeders) in 2012 at University hospital in Zurich by a interventional Neuro radiologist. Tumor shrunk 20% and no new growth. prof Valavanis has been very successful at this I am watch & wait if tumor starts to grow or new feeders developed I will need tumor embolization again. I now live in Ft Lauderdale permanently so I need to find a Dr in USA with experience at this. Seems not well known here in USA or I just have not found right Drs? Can you help me. Thank you.

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Hi @lindalb,
I would encourage you to call Mayo Clinic http://mayocl.in/1mtmR63 for more specific answers to your questions. We do have physicians in these categories and you can ask about them specifically.

NEURORADIOLOGY – INTERVENTIONAL
Harry J. Cloft, M.D., Ph.D.
David F. Kallmes, M.D.
Guiseppe Lanzino, M.D., (Neurosurgery)

NEUROINTERVENTIONAL SURGERY
Bernard R. Bendok, M.D.
Brian W. Chong, M.D.
Chandan Krishna, M.D.

NEURORADIOLOGY INTERVENTIONAL
Benjamin L. Brown, M.D., (Neurosurgery)
David A. Miller, M.D., (Joint appointment–Radiology)
Rabih G. Tawk, M.D., (Neurosurgery)

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PATCHY MENINGITIS OF THE BRAIN- anyone heard of this?
Hello my sister has been sick for 8 years. First it was breast cancer, then they said it went to her brain diagnosed her stage 4 . She for whatever reason she didn’t believe them, because the headaches started before she noticed the lump. UCSF did so many spinal taps poked prodded her for years. They did say it was not related. Thank goodness. But then after surgery for double mesectomy. She got worse. She took kemo for the cancer . No more breast cancer. BUT her headaches were so bad she would throw up violently. Could barely move . The doctors gave so much steroids for so long just to keep her alive until they figured out what she had. 5 years later gaining over 200 pounds from steroids/ braking both hips, her leg bone, almost had leg amputated 2 times . ( because her skin was so thin if she even tapped her leg against the wall it would split open ) eventual wound would not heal & went down to bone. So obviously she has an auto immune disease too. So finally, they diagnosed her with patchy meningitis of the brain.
Less than 3% of the world has it . At her oldest daughters wedding 25 mins after watching vows my sister goes into a diabetic coma. RIGHT in my arms. She has been in hospital so many times .
Well she took 4 treatments of some 15 hr kemo treatment in the hospital . And thank god this reduced it . She had been on the road to recovery. She lost almost 160 pds. Now her second daughter is getting married . My sister just found out this disease is back & moved to front of her brain .
DOES ANYONE KNOW ANYOTHER PERSON WHO HAS THIS ? She is desperate! Please help

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@kariulrich

That is a great question, There was Q&A on Pituitary Tumors with Dr. Bendok, Dr. Cook and Dr. Porter:

Live Q&A on Pituitary Tumors with Dr. Bendok, Dr. Cook and Dr. Porter.

Posted by Mayo Clinic on Monday, December 19, 2016

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hello – I'm new to this site
How often do these live discussions happen? How can I link I to one?
tks
Gloria

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