Watch and wait is over: meningioma has grown

Posted by wkindel @wkindel, Oct 12, 2018

Had my 4th MRI last Friday and yesterday found out my tumor has grown some more. Dr is recommending removal before it grows too much more. It is pushing deeper into the brain tissue and attached to the superior Sagittal sinus vein. We are seriously considering coming to Mayo. My symptoms are about the same. Tinnitus, occasional auras, and moderate headaches. Radiostatic gamma knife is an option but not the best. I am scared and trying to be strong. I still work full time in a stressful job and need to keep working. Hoping for a two week recovery time. I sent a pm message to Colleen to find out my next steps. It is 2:30 am right now and can’t sleep. Has anyone had the surgery recently? How are you doing?

Interested in more discussions like this? Go to the Brain Tumor Support Group.

@wkindel, I wish I had seen this message sooner. I can imagine that you're frightened and were unable to sleep.
The good news is that Mayo Clinic offers appointments within 48 hours through the the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your treatment options and answer your questions. Be sure to mention the Brain Tumor 48-access program. To contact Mayo Clinic, here is the online form and contact numbers for our 3 campuses http://mayocl.in/1mtmR63

At Mayo Clinic, experts work together as a team. Whether you choose to go to Mayo Clinic in AZ, FL or MN, you will benefit from the expertise of the entire team. Get to know some of the Mayo brain surgeons in these videos:
- #MayoClinicNeuroChat about Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-brain-tumors-2/
- #MayoClinicNeuroChat on Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-brain-tumors/

I'm also going to bring a few other members into this conversation. You may wish to connect with @tammywyatt who is investigating endonasal endoscopic surgery. I'm not sure if that's an option for you to consider.

Also @IndianaScott @nancye3 @lisakuehl and @jkenser all have experience with brain tumor care at Mayo Clinic. Feel free to read their posts and ask them questions. I know they'll be happy to share.

Here are a few discussions you may be interested in reading:
- Meningiomas. Gamma knife or Cyber Knife. Which is more effective? https://connect.mayoclinic.org/discussion/meningeomas-gamma-knife-or-cyber-knife-which-is-more-effective/
Gamma knife for meningiomas https://connect.mayoclinic.org/discussion/gamma-knife-for-meningiomas/

wkindel, is proton beam an option for you? Keep asking questions.

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@colleenyoung Thank you for your reply. I can't be on line at work so I couldn't answer back until now. I need answers to my questions about available family lodging and if I should request the appointment with the "request appointment" button or have my neurosurgeon do a referral? I also need to know if I need to have a preapproval from my insurance company. As for my options, my doctor never mentioned proton beam. As my post stated, my tumor is in a precarious spot against the superior sagittal sinus vein and probably attached.

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@wkindel

@colleenyoung Thank you for your reply. I can't be on line at work so I couldn't answer back until now. I need answers to my questions about available family lodging and if I should request the appointment with the "request appointment" button or have my neurosurgeon do a referral? I also need to know if I need to have a preapproval from my insurance company. As for my options, my doctor never mentioned proton beam. As my post stated, my tumor is in a precarious spot against the superior sagittal sinus vein and probably attached.

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@wkindel, you can self-refer to Mayo Clinic. However, it can be useful to have your neurosurgeon make the referral. That way he or she can share the details of your medical status and history, and talk doctor-to-doctor. This could help speed the process.

You can and probably should call Mayo Clinic using the contact information here http://mayocl.in/1mtmR63 to ask the logistically questions about family lodging, insurance approval, etc. To gather your facts, there is a lot of information available on our website that yu can read first and then ask specific questions. Here are some pages that will be useful for you:

- Patient and Visitor Guide https://www.mayoclinic.org/patient-visitor-guide
- Billing and insurance https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
- Concierge services (for travel and accommodation info) https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

You may also wish to read and take part specific discussions about travel and accommodation, etc. in the Visiting Mayo Clinic group here on Connect: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

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@colleenyoung

@wkindel, you can self-refer to Mayo Clinic. However, it can be useful to have your neurosurgeon make the referral. That way he or she can share the details of your medical status and history, and talk doctor-to-doctor. This could help speed the process.

You can and probably should call Mayo Clinic using the contact information here http://mayocl.in/1mtmR63 to ask the logistically questions about family lodging, insurance approval, etc. To gather your facts, there is a lot of information available on our website that yu can read first and then ask specific questions. Here are some pages that will be useful for you:

- Patient and Visitor Guide https://www.mayoclinic.org/patient-visitor-guide
- Billing and insurance https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
- Concierge services (for travel and accommodation info) https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

You may also wish to read and take part specific discussions about travel and accommodation, etc. in the Visiting Mayo Clinic group here on Connect: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

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Thank you for the links as I wasn’t able to find the info on the website. I will get the ball roling tomorrow now that I have decided to go with Mayo.

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Great, @wkindel. When you call, you'll be able to ask specific questions related to lodging, billing, etc. Best of luck and be sure to keep posting your questions here as they come up. Others who have been to Mayo can help be your virtual guide.

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@wkindel

Thank you for the links as I wasn’t able to find the info on the website. I will get the ball roling tomorrow now that I have decided to go with Mayo.

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You won't regret it I'm sure. I am 5 weeks post op from a retrosogmoid craniotomy for a 3.3 cm acoustic neuroma at Mayo Clinic in AZ. I was treated very well and am recovering faster than I dreamed possible!

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Hello, I'm new to this group. Have recently been diagnosed with multiple meningiomas from an MRI scan. My symptoms were gradual loss of smell, intermittent headaches and dizziness, so my primary care physician sent me to a neurologist. Had a brief office visit and he ordered the MRI. Any advice as to what I should ask this neurologist at my next appointment? I'm 63, non smoker, non drinking female. Thanks in advance

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@rose4622

You won't regret it I'm sure. I am 5 weeks post op from a retrosogmoid craniotomy for a 3.3 cm acoustic neuroma at Mayo Clinic in AZ. I was treated very well and am recovering faster than I dreamed possible!

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Thank you so much for your reply. I am so glad you are doing so well. I am nervous about any type of craniotomy, of course, but hearing of your experience helps me know I have made the right decision. I am taking the first steps today to call Mayo and find out if I do the preapproval or my doctor does, etc. Did it take you very long to get approval, precerts, etc. and get your appointment with Mayo?

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@wkindel

Thank you so much for your reply. I am so glad you are doing so well. I am nervous about any type of craniotomy, of course, but hearing of your experience helps me know I have made the right decision. I am taking the first steps today to call Mayo and find out if I do the preapproval or my doctor does, etc. Did it take you very long to get approval, precerts, etc. and get your appointment with Mayo?

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Dear wkindel I called Mayo Clinic and referred myself for a second opinion after seeing the local neurosurgeon that my medical doctor referred me to. He was young and had only done a few surgeries like mine. I also had to wait a long time to see him as his waiting room was so full. I got in to see the doctors at Mayo in just a few weeks , only short waits to see them and my surgery was scheduled a few weeks later. When my husband drove me the 7 hours to Mayo in AZ I was treated so well. I was assigned 2 surgeons( a neurosurgeon and a ear, nose and throat surgeon) and they said they did surgeries like mine 4 times a week. They listened well and both agreed the tumor had to be removed right away as it was pressing on the brain stem. I am so glad I chose Mayo Clinic. I will never regret it!

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@colleenyoung

@wkindel, I wish I had seen this message sooner. I can imagine that you're frightened and were unable to sleep.
The good news is that Mayo Clinic offers appointments within 48 hours through the the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your treatment options and answer your questions. Be sure to mention the Brain Tumor 48-access program. To contact Mayo Clinic, here is the online form and contact numbers for our 3 campuses http://mayocl.in/1mtmR63

At Mayo Clinic, experts work together as a team. Whether you choose to go to Mayo Clinic in AZ, FL or MN, you will benefit from the expertise of the entire team. Get to know some of the Mayo brain surgeons in these videos:
- #MayoClinicNeuroChat about Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-brain-tumors-2/
- #MayoClinicNeuroChat on Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-brain-tumors/

I'm also going to bring a few other members into this conversation. You may wish to connect with @tammywyatt who is investigating endonasal endoscopic surgery. I'm not sure if that's an option for you to consider.

Also @IndianaScott @nancye3 @lisakuehl and @jkenser all have experience with brain tumor care at Mayo Clinic. Feel free to read their posts and ask them questions. I know they'll be happy to share.

Here are a few discussions you may be interested in reading:
- Meningiomas. Gamma knife or Cyber Knife. Which is more effective? https://connect.mayoclinic.org/discussion/meningeomas-gamma-knife-or-cyber-knife-which-is-more-effective/
Gamma knife for meningiomas https://connect.mayoclinic.org/discussion/gamma-knife-for-meningiomas/

wkindel, is proton beam an option for you? Keep asking questions.

Jump to this post

@colleenyoung I have tried three times to call the Phoenix campus and receive a message that they are experiencing high call volumes and will call back within two business days. Is there any other way to talk to someone in the Brain Tumor area?

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