61
Radiation / Radiosurgery / Re: CK update
« Last post by DodgeAU on June 19, 2024, 01:59:48 am »Thanks Michelle, I will tell the MRI team here in Sydney when Im due for one in September this year. All the best
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62
Radiation / Radiosurgery / Re: CK update
« Last post by mwatto on June 18, 2024, 11:00:13 pm »Dodge I am in Perth. I just said if anything is flagged then sure I will come back and have the contrast - everyone agreed this was sensible. The MRI technician and my specialist. In any event good to know your renal function if you must have it. Imaging is way superior these days to what it was. And after radiotherapy its more about tracking and comparison every year I was told.
63
Radiation / Radiosurgery / Re: CK update
« Last post by DodgeAU on June 17, 2024, 03:55:35 pm »Good to hear your progress Dan. I'm on the second year post GK and wish to drop the contrast as well. I hope I can convince the local MRI staff 
64
Inquiries / Re: Tumor increase
« Last post by paddlecajole on June 16, 2024, 10:38:27 pm »Hi it is in the webinar library. If you look at my posts you may find a link or maybe ask Admin? For me it was very useful a few years ago...I searched again and found the article. The information provided is very useful to me.
65
Radiation / Radiosurgery / Re: CK update
« Last post by UkulelesAreAwesome on June 16, 2024, 04:21:58 pm »Congratulations! That first post radiation MRI is scary. The positive outcomes give the rest of us hope for the future.
66
Radiation / Radiosurgery / Re: CK update
« Last post by DanFouratt on June 15, 2024, 02:07:24 pm »Thanks,
Dan
Dan
67
Radiation / Radiosurgery / Re: CK update
« Last post by mwatto on June 14, 2024, 08:22:16 pm »Dan I am so happy for you! And also glad re no contrast :-)
68
Radiation / Radiosurgery / CK update
« Last post by DanFouratt on June 14, 2024, 02:21:33 pm »I finally had my 6-month post CK follow up at a mere 9 months. A little OHS came in the way. I went back to my ENT for long term follow up. I have previously posted the Oncology department at UNC is not patient friendly. That aside my tumor was marginally smaller, good news. Dr. Brown was very satisfied. I have a year break! I am so glad I went radiation in the fall. Dr. Brown, no so much, but support my decision and was part of the radiation team.
I asked about dropping the contrast, long story short it is easier to drop contrast if you have radiation. I was told I no longer needed it! 😊 Next meeting with him in 12 months.
Next event for me is in 30 days for his OHS review. This was made possible by the radiation decision. I would not have be able to do the stress test in December, that led to OHS in March and a great recovery form that.
Thank you for your support through the years.
Dan
I asked about dropping the contrast, long story short it is easier to drop contrast if you have radiation. I was told I no longer needed it! 😊 Next meeting with him in 12 months.
Next event for me is in 30 days for his OHS review. This was made possible by the radiation decision. I would not have be able to do the stress test in December, that led to OHS in March and a great recovery form that.
Thank you for your support through the years.
Dan
69
AN Issues / Acoustic Neuroma / Li-Fraumeni Syndrome
« Last post by karenmet on June 13, 2024, 06:17:09 am »I was diagnosed with AN in July/2023 have been watching for year now the tumor has started growing 11mm x 3.5mm . I have Li-Fraumeni Syndrome it is a rare autosomal dominant hereditary disorder. I am missing TP53 gene on chromosome 17 that normally assists in the control of cell division and growth, my body does not fight off cancer! I have had 5 types of cancer over the last 32 years. I have had cancer from radiation treatments. I am checking to see anyone else out there has had these two things there are very few people that have Li-Fraumeni. Trying to make right decision on treatment type. Gamma knife and take chance it will not turn the tumor into cancer or Middle Fossa surgery and remove tumor??
70
Physicians / Re: Golfinos NYC Retro
« Last post by MarlaB on June 12, 2024, 11:44:50 am »I'm originally from NY but am living on the West coast now, so I had a retro for a 2.7 cm in Seattle.
I've met Golfinos and Roland, and have heard only wonderful things about them.
At the time of my surgery, my son was in high school and my daughter was already living away from home, but I still needed help for the first two weeks to comply with discharge orders regarding rest and not bending too far over. (I even moved my socks from the bottom drawer to the top...)
One friend who had surgery sent her son who was not quite a teen to have a "Vacation" with friends for two weeks after her surgery. I think it was harder on her because she missed him.
I did lose the hearing on one side, but it's tolerable, as is the tinnitus.
Wishing you the best.
Marla B
I've met Golfinos and Roland, and have heard only wonderful things about them.
At the time of my surgery, my son was in high school and my daughter was already living away from home, but I still needed help for the first two weeks to comply with discharge orders regarding rest and not bending too far over. (I even moved my socks from the bottom drawer to the top...)
One friend who had surgery sent her son who was not quite a teen to have a "Vacation" with friends for two weeks after her surgery. I think it was harder on her because she missed him.
I did lose the hearing on one side, but it's tolerable, as is the tinnitus.
Wishing you the best.
Marla B