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parker80138
@parker80138

Posts: 8
Joined: May 02, 2016

Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon?

Posted by @parker80138, May 2, 2016

Can anyone recommend a great neurosurgeon for my 34 year old daughter that was just diagnosed with anaplastic astrocytoma on April 29, 2016. She has Kaiser insurance and we are trying to get authorization to go outside their network for treatment. Thanks!

REPLY

Yes, Doctor Howard Levine is located in Miami FL. He replaced three disks in my neck, and had to remove and put in another bridge in my lower back. I would never let any other Doctor touch me.

Welcome to Connect, @parker80138.
If you would like to seek the consultation of a Mayo Clinic neurosurgeon, please contact the number at the location of your choice here: http://mayocl.in/1mtmR63

I’m also tagging Connect members @cleahy85 @audrapopp @121861 @carolina2501 @cynaburst for their surgeon recommendations.
How was the brain tumor discovered? What next steps are being considered?

@colleenyoung

Welcome to Connect, @parker80138.
If you would like to seek the consultation of a Mayo Clinic neurosurgeon, please contact the number at the location of your choice here: http://mayocl.in/1mtmR63

I’m also tagging Connect members @cleahy85 @audrapopp @121861 @carolina2501 @cynaburst for their surgeon recommendations.
How was the brain tumor discovered? What next steps are being considered?

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Sorry to hear about your daughters diagnosis. My daughter has been diagnosed with same tumor .. Where are you considering having her surgery at ? My daughter had surgery at siteman in St. Louis . Her surgeon is dr luethardt , he is an amazing surgeon. Also at May in Minnesota , dr parney is supposed to be very good .

@colleenyoung

Welcome to Connect, @parker80138.
If you would like to seek the consultation of a Mayo Clinic neurosurgeon, please contact the number at the location of your choice here: http://mayocl.in/1mtmR63

I’m also tagging Connect members @cleahy85 @audrapopp @121861 @carolina2501 @cynaburst for their surgeon recommendations.
How was the brain tumor discovered? What next steps are being considered?

Jump to this post

Thank you for the reply. I am sorry to hear you are going through the same thing we are right now. Her health care provider is Kaiser and we were hoping to get a referral outside Kaiser for the surgery but they denied our request today. I guess we are going to have to trust the surgeon will get as much of the tumor out without causing any damage to any important motor tracts. She is having open enrollment right now and she intends to select Blue Cross as her new provider starting July 1. Unfortunately she needs surgery ASAP and it’s currently scheduled for June 2. If she needs additional surgeries at least our options will be much greater starting July 1.

I hope your daughter is doing well!

Thanks again

@trivon

Yes, Doctor Howard Levine is located in Miami FL. He replaced three disks in my neck, and had to remove and put in another bridge in my lower back. I would never let any other Doctor touch me.

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Thank you for the response Trivon. I am searching for a neurosurgeon that only works on brain tumors not a neurosurgeon generalist. I am glad Dr. Levine was able to help you with your back though!

Thanks again!

My husband was diagnosed with Pituitary Adenoma and his doctor from University of Miami, Dr Ronald J Beneviste 305 243-6946.

Go to Mayo Clinic Rochester

Dr. Mohamed Elhammady Tampa Florida. Great neurosurgeon. My family member also diagnosed with anaplastic astrocytoma. Very caring and knowledgeable .

@colleenyoung

Welcome to Connect, @parker80138.
If you would like to seek the consultation of a Mayo Clinic neurosurgeon, please contact the number at the location of your choice here: http://mayocl.in/1mtmR63

I’m also tagging Connect members @cleahy85 @audrapopp @121861 @carolina2501 @cynaburst for their surgeon recommendations.
How was the brain tumor discovered? What next steps are being considered?

Jump to this post

Hello Colleen, I just joined this group today. I read your post and was wondering how your daughter is doing. I was diagnosed with AA grade III on April 10. I just finished 6 weeks radiation/temedar. My first post treatment MRI is in a few days, I’m very nervous! I’m located in Kansas.

@egee202

Dr. Mohamed Elhammady Tampa Florida. Great neurosurgeon. My family member also diagnosed with anaplastic astrocytoma. Very caring and knowledgeable .

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Can you share how long your family member has had their AA tumor?

Welcome to Connect @kansastumor. I’m so glad you joined us here. It sounds like you’ve had a whirlwind tour of the medical system since April. I can imagine you’re nervous about your upcoming MRI. In patient lingo we have a name for that — scanxiety. Have you heard people say that? We’re here to talk any time you want.

Hi @parker80138,
@kansastumor‘s post reminded me that we haven’t spoke for a while. How did your daughter’s surgery go? How is she doing? And you, how are you?

Hi – Thanks for asking. Lot’s of activity since the initial diagnosis. Here is a summary.

My 34 year old daughter was diagnosed with AA in April. She had two surgeries to resect the tumor. The first surgeon was not the best choice but we ended up finding a very good team at CU Denver Anschutz Medical Center which happens to be where she works. They used technology that is literally on the leading edge of brain surgery. She was the first patient to have inter-operative MRI used during her awake craniotomy in the state of Colorado and the surgeon estimates less than 25 have been performed nationally. They also used neuro-navigation, awake cortical mapping, and fluorescein dye to illuminate the tumor during the resection. That surgery was June 1st and she has returned to her job full time while participating in the standard Temodar and radiation treatments. She is dealing with some aphasia but it seems to be getting better as each week passes and her speech pathologist thinks she will make a full recovery with the aphasia.

We have also hired Dr. Hartmut Stecher in Seattle. He is the founder of a company called Cancer Treatment Navigator (http://www.cancertreatmentnavigator.com). Dr. Stecher is a biochemist, Ph. D. that specializes in immunotherapy options like dendritic cell based therapies, T-cell based therapies, cancer vaccination strategies, cytokine therapies, and recombinant antibody therapies. Hopefully we never have to use his services. If she does have a recurrence we want to be ready to act quickly.

Look under neurosugeon vs Stanford vs Johns Hopkins vsuniversity of california at san francisco, etc

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