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Microsurgical Options / Re: Those who traveled for treatment...
« Last post by Shah_jl on August 16, 2018, 10:30:23 pm »
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
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Post-Treatment / Re: Keloid
« Last post by Shah_jl on August 16, 2018, 10:12:13 pm »
Hi Marvin! I'm prone to keloid. I am 4 weeks post op from middle fossa and has my dermatologist keeping an eye on my scars. My scars are healing nicely and are mostly flat except the incision that was in front of my ear is more raised. I am putting a scilicon sheet on that part. I did get an injection of the scar on my stomach because it was more raised due to them using an old incision line and it is now flat. Have you seen your doctor/dermatologist? Maybe it's time for something other than the silicone if you are still having issues? Sometimes the keloid can be under the skin as well.
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Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by SP on August 16, 2018, 06:59:44 pm »
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
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Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by notaclone13 on August 16, 2018, 06:47:10 pm »
Congrats on your good news Stella! Here’s to many more years of good results and hopefully no further problems of any sort. You traveled a long way for treatment, but it sounds like it was worth every mile.
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Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by Gtmochi on August 16, 2018, 05:43:45 pm »
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  ;D.

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
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Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by gary.s on August 16, 2018, 02:21:38 pm »
Great news Stella, the tumor is stable. I am sure that is quite a relief, those MRI's cause anxiety in all of us. I guess a decrease in hearing is something we should not be surprised by. It is part of the acoustic neuroma challenge. Best of luck at the ophthalmologist appointment, hope all is well.

Gary
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For those in the 'watch and wait' status / Re: Gandolinium Lawsuit Advertisement
« Last post by Cityview on August 16, 2018, 08:01:18 am »
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.
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Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by SP on August 15, 2018, 06:18:51 pm »
Thanks for your lovely support Jessica!!!  L.A. good vibes sound great to me :)

some additional info from Stanford:  ...this increase in ventricle size occurs in about 4% of patients, (similar to my case), due to release of protein. Usually, it's just incidental findings with no need for intervention...
I'll post my ophthalmologist updates after next week... fingers crossed ...

It's sunny here again today --- some Vitamin D therapy is due; a walk in the sun  8)

I hope that you are doing really well !

Stella
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For those in the 'watch and wait' status / Re: Gandolinium Lawsuit Advertisement
« Last post by ANSydney on August 15, 2018, 05:30:15 pm »
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.
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Radiation / Radiosurgery / Re: My AN Story – Sydney to Stanford CK
« Last post by Gtmochi on August 15, 2018, 04:00:18 pm »
Hi SP!

Woot! Stable in size! How pleased you must be for that aspect of your report?!

The slight hearing decline and slight enlargement of ventricles...not so much. Hearing is tough to lose. That's an aspect of this whole thing that never fails to make me a bit emo - I am sorry you got that news.  But if you are feeling ok, that's good! Also, that you have had the slight enlargement before and all was well - history is in your favor. All will be well again!  Keep enjoying the sun, yoga, and taking great care of yourself!

Sending positive vibes from LA ;-)

Jessica




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