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meningiomas

Apple
0 Recommendations

Want to know more about meningiomas, and share knowledge / discuss with professionals / patients and their families.

Explore topics in this discussion:

Acoustic neuroma Cancer Neurofibromatosis Surgery Brain tumors Edema Drug abuse

14 replies

russtoo

Hi Apple;

Of course the net is an invaluable resource for Maningioma explanation, but simply, as I understand things, meningiomas are located near the brain's "meniges" and attached to. The area is more exteriorly located than deep brain tumors and are somewhat easier to extract surgically.
Sometimes they do get quite large.

Russ

Apple

Thanks Russ!

1) I am interested in know the best doctors people can recommend for second opinion regarding meningiomas.
2) Information about edema -- how serious the edema could be, and what kind of treatment are used.
3) What kind of options people are using, anyone with wait and see approach?
4) best conservative options for treatment?
5) Anyone using alternative medicine?

Thanks!

russtoo

Hi Apple

This link discusses irradiation of meningioma. You may wish to scroll down a ways: http://www.irsa.org/meningioma.html

I would Google meningioma + Emedicine to look for articles re; meningioma. Also, read contraindications.

Any neurosurgeon would be qualified, but I think the best qualified would be those with the most neurofibromatosis - 1 or 2 experience. See http://www.anausa.org or http:www.nfinc.org/

Entrez PubMed ( US Library of Medicine ) is another good informational site.

One could register at the CyberKnife Support Group and ask Drs. Medberry or Spunberg.

Just my thoughts, but I feel edema would vary as to the pt. or situation and be controlled by steroid if necessary.

I've never known of one watching and waiting a meningioma long, say, like an acoustic neuroma.

From a personal viewpoint, I'm not a believer in alternative medicine for brain tumors.

Not sure if I've offered you anything of interest to you.

Russ

Sharm

Dr. Daniel Kelly the Medical Director of the Neuro-Endocrine Tumor Center (NETC) (He was at UCLA Medical Center for 14 years and recently moved his program to St. John’s Health Center and John Wayne’s Cancer Institute) He one of the top neurosurgeons in the country and he is doing amazing things with all types of brain tumors most of his surgeries are done now minimally invasive, he doesn’t have to do many of the surgeries like other neurosurgeons with a craniotomy, he's doing mostly suborbital and just mini craniotomies now. If you send him your records and let him know I told you to send them he will give you a second opinion at no charge he will look at everything and call you and let you know what he thinks. You can contact him at www.neuro-endo.org You will find a lot of publications as well as videos etc on his website, it is a website for patient information not just about the NETC-Dr. Kelly designed the website to help inform the patients.

If you have any questions you can e-mail me also
sharmyn@hormones411.org

Many blessings,
Sharmyn

Apple

I am so grateful to you, Russ, Sharm!
My tears are just coming out. Thank you from bottom of my heart!

I will definitely try Dr Kelly -- Thank you, Thank you!

Apple

russnftwo

Hi Apple;

Dr. Shahinian at Cedars Sinai Medical Center also performs Minimally Invasive Endoscopic removal of brain tumors, especially Acoustic Neuromas, but, I wouldn't jump w/o more than one opinion. In AN support groups, the procedure is known to have inherrant dangers, is less commonly accepted and utilized nationally, and there have only been approximately 1000 performed that I know of.
It is known when Cedar's began the program, Dr. S was licensed only for general surgery and not, neurosurgery. He sued a neurosurgeon for making it more difficult to become dept. head of the Minimally Invasive unit.

Sharm

Dr. Shahinian is not on staff at Cedars any more and he is NOT a neurosurgeon. He can do skull base surgery not neurosurgery.

Apple

Thanks guys!

Do you have information specific regarding falx cerebri meningothelioma?

Sharm

Dear Apple:

I talked with Dr. Kelly and he said he did two surgeries last week on meningothelioma. He asked if it was a meningioma as meningotheliomas are cancers and rarely go to brain?

I will keep all good thoughts and please let me know how you are doing. I let Dr. Kelly know you maybe sending your studies to him soon, so he will look for them, you can remind him "Sharmyn" talked with you about me. He sees a lot of patients and he is an excellent surgeron.

Apple

Hi Sharm,

Thanks!
I will talk to Dr. Kelly to get his opinion,
currently the material is at another expert's hand, I will forward to Dr. Kelly once I have the stuff back... probably around week or so.

Thanks again

indigochakra

That's incorrect.... Dr Shahinian is on staff & Skull Base Institute is on the campus with Cedars-Sinia.
http://www.csmc.edu/mddb/default.asp?specialty=&rank=&lname=Shahinian&fname =&city=&zip=&search=y&x=0&y=0

Practitioner:
Hrayr Shahinian, MD
Active, Attending
Date on staff: 12/9/1996

I am scheduled to have surgery with him on 9/3/08 for a brain mass that most doctors either want to wait for my symptoms to get worse or do a surgery that could cause months of recovery verses 3 weeks recovery with Dr Shahinian. He's the best of the best! You can google his name to learn that!

Sharm

I personally only refer patients with brain tumors to what I personally know as, the best of the best-"neurosurgeons." These surgeons are licensed in neurosurgery, who have studied with other best of the best neurosurgeons, who are highly respected by both their patients and their colleagues, who are not only doing the most advanced treatments themselves but also teach other neurosurgeons their advanced techniques. And because of their dedication to advancing medicine their patient’s recovery (depending on the severity of their condition) is much, much, much quicker and improved from the older techniques.

However, it is always up to an individual patient to take time to personally research surgeons and after meeting with them and researching their level of expertise, make a decision they feel good about for themselves.

I have been a patient advocate since my own surgery in 2000, and through the years I have seen a lot of, what seemed like good advice about their wonderful experiences, as well as, those stories from patients that thought their surgeon was a criminal because of the outcome of their surgery, and should loose their right to practice medicine, all of which given freely on the Internet, but of course, there is always two sides to every story and I have seen some pretty horrible things happen to patients that SHOULD not have happened during surgery, that was never announced on the Internet, as well as, I personally know thousands of patients that are living wonderful healthy lives after their brain surgery also not announced on the Internet. I have seen some crazy patients telling people horrible things about, highly experienced doctors that have helped thousands of patient, but what the crazy patient did not reveal was their alcoholism, or their drug abuse and so on.

It's nice to read about what others consider excellent or horrible on the Internet but it is a very small part of the real world and the patient needs to ultimately make the best decision based on their own research and comfort.

Good luck and many blessings.

bigme

I have done research on Dr. Shahinian and believe the keyhole endoscopic procedure that he doesis the best for me, unfortunatley he doesn't accept my insurance. I am trying to appeal this but so far no luck. Does Dr. Kelly do the fully endoscopic acoustic neuroma procedure that Dr. Shahinian does. If not can you recommend anyone that does. The thought of open surgery scares me and the complications scare me even more.
Thank you

bigme

I am planning on using Dr. Shahinian for an acoustic Neuroma can you let me know how your surgery and recovery went.

Thank you

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