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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?

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wkindel | @wkindel | Oct 15, 2018
In reply to @rose4622 "Dear wkindel I called Mayo Clinic and referred myself for a second opinion after seeing the..." + (show)
@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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 15, 2018
In reply to @wkindel "@colleenyoung I have tried three times to call the Phoenix campus and receive a message that..." + (show)
@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.

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1 reply
wkindel | @wkindel | Oct 19, 2018
In reply to @colleenyoung "Oh dear, @wkindel. I think I know what may be causing the abnormal response time. Just..." + (show)
@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.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 20, 2018
In reply to @wkindel "@colleenyoung Ok- I have two appointments on 10/29 at the Phoenix Mayo. We are flying down..." + (show)
@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.

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1 reply
rose4622 | @rose4622 | Oct 20, 2018

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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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Oct 20, 2018
In reply to @wkindel "@colleenyoung Ok- I have two appointments on 10/29 at the Phoenix Mayo. We are flying down..." + (show)
@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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Hello @wkindel I am Scott (indianaacott) who Colleen referred to. I am pleased to e-meet you here although I am sorry to read of your heslth issues.

My wife had brain cancer and was a patient st Mayo for her entire 14 year war. We went the first time after her diagnosis in Chicago. All the scans, etc. were sent ahead and when shw was first seen the Mayo doctors had reviewed it all.

When we checked in at the front desk they gave us a complete packet of information and full explanation of what her schedule would be.

For medical reasons they decided to perform emergency surgery immediately so her case was, as @colleenyoung said, unique. We were never in the dark as we were kept wl informed all along the way.

Please feel free to ask any questions you might have for me.

Strength, courage, and peace!

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2 replies
rose4622 | @rose4622 | Oct 21, 2018
In reply to @rose4622 "I got scheduled within 2 weeks, saw 2 surgeons and an audiologist. The said I needed..." + (show)
@rose4622

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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I meant to say I needed 2 surgeons. They are great surgeons and I have no regrets. The hospital staff were awesome too.

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wkindel | @wkindel | Oct 21, 2018
In reply to @colleenyoung "That's great news @wkindel. You're asking all the right questions about what to expect now that..." + (show)
@colleenyoung

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.

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Who do I ask for to get the details specific to me? I searched the website and it doesn't say.

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1 reply
wkindel | @wkindel | Oct 21, 2018
In reply to @IndianaScott "Hello @wkindel I am Scott (indianaacott) who Colleen referred to. I am pleased to e-meet you..." + (show)
@IndianaScott

Hello @wkindel I am Scott (indianaacott) who Colleen referred to. I am pleased to e-meet you here although I am sorry to read of your heslth issues.

My wife had brain cancer and was a patient st Mayo for her entire 14 year war. We went the first time after her diagnosis in Chicago. All the scans, etc. were sent ahead and when shw was first seen the Mayo doctors had reviewed it all.

When we checked in at the front desk they gave us a complete packet of information and full explanation of what her schedule would be.

For medical reasons they decided to perform emergency surgery immediately so her case was, as @colleenyoung said, unique. We were never in the dark as we were kept wl informed all along the way.

Please feel free to ask any questions you might have for me.

Strength, courage, and peace!

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@IndianaScott Thank you so much for sharing your experience. Right now I am aware of only two appointments. I would rather they do the surgery right away for several reasons. If it's growing I want it out! My doctor explained the problems with waiting, even though during my watch and wait phase I was told the location of the tumor complicates surgery. I have been able to hold it together, thankfully due to my faith. I think the fear of the unknown is bothering me more than the idea of the procedure itself. Of course, though money isn't the most important thing, it is very expensive for travel out of our very remote location, and lodging and food for family when we get there is high too. Colleen recommended I call Mayo tomorrow to get some of my specific questions answered, but I don't know who to ask for. Do you know? Thank you Scott

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 21, 2018
In reply to @wkindel "Who do I ask for to get the details specific to me? I searched the website..." + (show)
@wkindel

Who do I ask for to get the details specific to me? I searched the website and it doesn't say.

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Sorry about that @wkindel. I wasn't very clear, was I? You should call the Central Appointment Office in Phoenix at 1-888-674-5202 (toll-free). They will be able to route you through to the right person, likely in neurosurgery. Be sure to have your Mayo Clinic patient number (if you have one already) and details of your appointment time etc.

Make sense?

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