ANA Discussion Forum

I traveled from MI to San Diego. I scheduled my return flight three days after my scheduled follow up with the doctors, but would have been able to adjust the flight if necessary. I only traveled with my husband, our kids stayed home with their grandmother. He stayed in the hospital with me. We flew in on Sunday, had pre-op appointments Monday, surgery on Tuesday. I was discharged on Friday and stayed in a hotel until that next Saturday. We Ubered a ton, and also did a 2 day car rental when we wanted to venture out a little further. Walking was weird, riding in a car was weird, even sleeping elevated was weird. But you just find a way to cope. Our hotel was approx 10-15 minutes away from the hospital because it was more cost efficient for us. It did have a refrigerator and microwave plus free breakfast, so we were able save some money that way as well. It was good to have snacks in the room because there wasnt a set schedule of how I would feel. After discharge I only returned to the area of the hospital again for my post op follow ups. While we were in San Diego we walked the area around the hotel as well as spent time walking in areas that we ubered to. I'm four weeks out of surgery, and have not had to go back. I have communicated with the doctors via phone or email. Good luck to you

Thanks for your kind words Gary! yes you're spot on the hearing; a challenge for sure, but I'm grateful for my little hearing aid; I hope that you are doing well and that your hearing aid fitting is a positive step forward.

Jessica-- thank you for taking the time to follow my journey -- I really like the way you focus on the positive , its a great reminder to me. It's great to hear that you are doing well !  how you feel is so important - It's a relief when when the testing milestones are done, I'll keep an eye out for your updates and wish for you the very best outcomes.

@ notaclone13, thank you kindly for your positive support! yes a long way to go but so grateful for the opportunity & support.

keep on moving forward,
Stella

You're welcome, Stella! 
That additional news from Stanford is super. Confirmation that something happening is not unexpected is so reassuring, and even better, the word "incidental".  Such a lovely, don't-worry-about-the-issue kind of word! I'd hang on to that one  .

Best of luck at the ophthalmologist appointment!

Also! I am good, thanks!! Thus far I've only had the one little blip. I'm super grateful to be able to ride, work, walk the dogs...whatever. I'll get a better idea in less than 2 months(!) when I finally get my 6 month MRI and hearing test. Hallelujah. I can't wait till I pass that milestone.

Glad to hear it's sunny there today - enjoy your time outdoors! 

Jessica

When first diagnosed they want to track the rate of growth because it's so new. So they space out the MRIs about six months apart. Depending on what happens next will determine how frequent the MRIs. Because of the recent attention the issue has gotten in the press now we'll see a push back against the contrast. Some doctors will follow people without contrast. It's also a case where maybe a person can have some MRIs without it and some with it. It's good to keep a close eye on these ANs but sometimes having too many MRIs too close together is meaningless because the readings vary so much. The problem is we can have an emotional response to the readings and meanwhile six months later it can measure smaller.
I like what Dr. Haynes said on the Vanderbilt Facebook Live event...that a person could have two MRIs on the same day and it could look like there was growth just because of the way the technology works.  He also mentioned something about not needing contrast every time. (I'm summarizing)
I found that Facebook Live event very good in so many ways....very interesting.
Lots of good stuff.

My first two MRIs were done with gadolinium contrast agent (GAD). The next two MRIs were done without. There is no problem identifying the edge of the tumor without contrast agent. Actually, it is better at defining the edge since there is no bright tumor image that makes it hard to make out the edge clearly.

My summation is that if you want to see if there is a tumor present, GAD is best. Particularly in identifying small tumors. If you want to do a measurement to determine the growth profile I actually prefer without GAD.

My unqualified opinion is to use GAD for the diagnostic MRI and then never to use it again.

In an unrelated MRI that I recently undertook, the doctor prescribed an MRI with GAD. I called back to ask if the GAD could be skipped and he said yes. According to the doctor, the radiologists prefer GAD, but can work with  it.