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multiple meningioma brain tumors

Brain Tumor | Last Active: May 29, 2023 | Replies (127)

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@nancye3

Hello, I am new to the group and would really appreciate some advice. My sister has been diagnosed with 3 benign meningeomas. She had surgery in 2001 for one that was 5 cm. This is the first time since then that there are new ones, possibly one recurrence. She has 2 opinions so far. One Doc suggested Gamma Knife, the other Cyber Knife. She would like to seek a 3rd opinion at a Major Hospital, Mayo Clinic or John Hopkins. She does not know which to go to or which type of radiation she should have. Her tumors are fairly small at this time. Any advice or similar experiences would be greatly appreciated. She is very worried about side effects of radiation. Thank You

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Replies to "Hello, I am new to the group and would really appreciate some advice. My sister has..."

Hi Nancy, welcome to Connect.
I moved your message to the Brain Tumor group to a discussion about multiple meningiomas. Like your sister, the members talking in this discussion group have all had multiple tumors. They've been treated at centers across the country. I recommend reading through the past messages to learn more.

You asked about Gamma Knife and CyberKnife. Often people use these 2 terms interchangeably however, they are two different technologies used to deliver stereotactic radiosurgery. Stereotactic radiosurgery (SRS) is a type of treatment that uses precise beams of radiation to destroy tumors of the brain, head, and neck, and to treat other neurological disorders. I like this simple comparison of the 2 technologies from the Valley Health System https://www.valleygammaknife.com/the-technology/gamma-knife-versus-cyberknife

Here's more information about brain stereotactic radiosurgery from Mayo Clinic http://www.mayoclinic.org/tests-procedures/brain-stereotactic-radiosurgery/home/ovc-20215376

@pegorr has had both types of SRS and may be able to add more information from first-hand experience.

Nancy, if you sister would like to inquire about a third opinion from Mayo Clinic use this link http://mayocl.in/1mtmR63 You’ll find the contact information for each of the locations and an online form. Mayo experts can help your sister navigate the healthcare journey, answer questions and guide her through the treatment plan. The Mayo Brain Tumor Clinic offers appointments within 48 hours. If she needs to be seen quickly, be sure to mention the Brain Tumor 48-access program.

Side effects after brain surgery are different for everyone. Fatigue is a big one. You might appreciate reading and joining the conversation here:
Life after Brain surgery https://connect.mayoclinic.org/discussion/life-after-brain-surgery/

Thank You Colleen for all the helpful information and links. My sister would like a 3rd opinion. Probably in person, however she may want to send her most recent MRI results. One neurosurgeon thought she should have Gamma Knife right away and the other felt she could wait and watch, for now anyway. He felt she should be tested again in 4 months. He does not do the Gamma Knife procedure. He uses Cyber Knife. I have read about both, pros and cons. I think I mentioned that my sister had surgery in 2001 for a 5cm meningioma. She lost her sense of smell as a result of that surgery. She had to have 2 more surgeries as a result of a hospital induced infection. Can you tell me approximately how many Gamma Knife and Cyber Knife procedures Mayo Clinic does in a year? Or can you refer me to someone who does?Thank You,Nancy

You're most welcome. Indeed a third opinion at Mayo Clinic would be done in person, but sending diagnostic test results can be helpful for review before you arrive. You ask very good questions re how many procedures are done in a year, etc. That is data that I don't have today being July 4. I'll see what I can find out. However, if you call Mayo Clinic and ask for the Brain Tumor 48-access program, they should be able to give you that information. http://mayocl.in/1mtmR63

Of all the senses to lose, I think most people would consider the loss of smell to be inconsequential, but it is significant isn't it? I think we don't know what we have until it is gone. We use our sense of smell for so much -- to sense danger, pleasure, trigger memory, and for taste to name a few.

Thanks for even responding on a Holiday!! Happy 4th of July!! When my sister had her surgery  in 2001, she was at risk to lose her eye sight, so I was relieved it was her sense of smell instead. I had so hoped this was all behind her. She will definitely follow the link you sent and ask all her questions.