Watch and wait is over

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?

@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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@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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@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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@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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@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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@wkindel

@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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I traveled from NM to AZ Mayo Clinic for my brain surgery. I rented a BnB for my family to stay in. It was a lot cheaper than a motel. ☺

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@rose4622

I traveled from NM to AZ Mayo Clinic for my brain surgery. I rented a BnB for my family to stay in. It was a lot cheaper than a motel. ☺

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Thanks. Good idea. I will check it out. Just want to it to be very near Mayo

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@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

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Thank you. We are flying into Mesa Gateway late Sunday (10:56). We will need ground transportation to the Marriott Residence at Mayo but no shuttles run that late. Other than cabs, any suggestions on rides from airport to hotel?

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I’d look into Uber or Supershuttle.

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I will be at Mayo Clinic AZ on Thursday for post op with Dr. Bendock. Hope you get him for a surgeon wkindel. He is very nice and when I had complications after surgery he was right there for me. I had awesome surgeons, nurses and hospital staff!

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@rose4622

I will be at Mayo Clinic AZ on Thursday for post op with Dr. Bendock. Hope you get him for a surgeon wkindel. He is very nice and when I had complications after surgery he was right there for me. I had awesome surgeons, nurses and hospital staff!

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Is this dr at Jacksonville?

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@rose4622

I will be at Mayo Clinic AZ on Thursday for post op with Dr. Bendock. Hope you get him for a surgeon wkindel. He is very nice and when I had complications after surgery he was right there for me. I had awesome surgeons, nurses and hospital staff!

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Sorry! Just reread. I see he’s at AZ!!

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@wkindel

Thank you. We are flying into Mesa Gateway late Sunday (10:56). We will need ground transportation to the Marriott Residence at Mayo but no shuttles run that late. Other than cabs, any suggestions on rides from airport to hotel?

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@wkindel, I just wanted to write a quick note to let you know I've been thinking about you. Hope all is going as well as can be expected.

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Thanks for thinking of me. I flew down and went to Mayo Phoenix this week. After my 4th MRI my neurosurgeon here said my tumor had grown in my last two MRI's as posted in my earlier comments. The two Mayo Drs I saw both agree the tumor has NOT grown and the superior sagittal sinus vein causing concern has actually already become occluded and my body has created new veins to take care of the blood flow that would have drained through the vein below the occlusion. The body is a wonderful thing! No surgery needed at this time. We will watch it with MRI's annually unless symptoms increase. So back to watch and wait, but I feel ok with it now.

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