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wkindel
@wkindel

Posts: 24
Joined: Sep 28, 2017

Watch and wait is over

Posted by @wkindel, Fri, Oct 12 3:54am

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?

REPLY

@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.

@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.

@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/

@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.

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.

@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!

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

@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?

@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!

@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.

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@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?

@rose4622

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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Thank you so much for your reply. So it sounds like it make take two trips down there. One to see the doctors and then again to do the surgery. I just need to get through to talk to someone. Meanwhile I left a message for my local neurosurgeon to send a referral down to them at Mayo. Hope you continue to do well.

@wkindel

@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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Oh dear, @wkindel. I think I know what may be causing the abnormal response time. Just last week the Arizona campus switched their entire internal communications system to a more efficient, patient-centered system called EPIC. The system will make things better, however, transitions are always rough. I suggest you wait until tomorrow and perhaps try again. Be sure to mention the Brain Tumor 48-access program in your message. Let me know what happens.

@colleenyoung

Oh dear, @wkindel. I think I know what may be causing the abnormal response time. Just last week the Arizona campus switched their entire internal communications system to a more efficient, patient-centered system called EPIC. The system will make things better, however, transitions are always rough. I suggest you wait until tomorrow and perhaps try again. Be sure to mention the Brain Tumor 48-access program in your message. Let me know what happens.

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@colleenyoung Ok- I have two appointments on 10/29 at the Phoenix Mayo. We are flying down on a late flight the night before and my first appointment is at 8:00 am. I was wondering if someone is going to contact me and tell me what to expect. My doctor sent my MRI's and doctor notes. He is recommending surgery to remove my tumor because it is growing. I made flight plans and hotel room reservations for my husband that allowed me time to remain in Phoenix for the surgery and wait a week to fly (which is what my doctor said is protocol following brain surgery). Do the Mayo doctors review my records and tests before I get there and then evaluate me and decide if they agree with my neurosurgeon? If they do, is it possible I can stay and have it done right away? I hate the idea of having to come home and wait. Or is it most common that you do have to make two trips? Even with brain tumors? Trying to remain calm in this state of the unknown.

@wkindel

@colleenyoung Ok- I have two appointments on 10/29 at the Phoenix Mayo. We are flying down on a late flight the night before and my first appointment is at 8:00 am. I was wondering if someone is going to contact me and tell me what to expect. My doctor sent my MRI's and doctor notes. He is recommending surgery to remove my tumor because it is growing. I made flight plans and hotel room reservations for my husband that allowed me time to remain in Phoenix for the surgery and wait a week to fly (which is what my doctor said is protocol following brain surgery). Do the Mayo doctors review my records and tests before I get there and then evaluate me and decide if they agree with my neurosurgeon? If they do, is it possible I can stay and have it done right away? I hate the idea of having to come home and wait. Or is it most common that you do have to make two trips? Even with brain tumors? Trying to remain calm in this state of the unknown.

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That's great news @wkindel. You're asking all the right questions about what to expect now that you have an appointment at Mayo Clinic. I recommend that you phone Mayo Clinic Phoenix to get answers specific to you about how long you can expect to be there and how the evaluation works, etc.

I'm also tagging other Connect members. @nancye3 @lindajean @rose4622 @jkenser and @IndianaScott have had brain tumor surgery (or a family member) at Mayo Clinic. They can share how the process was for them and answer questions like whether they made multiple trips for evaluation and then surgery or if everything was done in one visit. Keep in mind that everyone is different.

I got scheduled within 2 weeks, saw 2 surgeons and an audiologist. The said I needed surgery and that I needed two surgeries and as soon as they built their team they would schedule and call me. They said 3 weeks but it was 2 weeks.

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