Tumbleweed's 9-year followup MRI

[Tumbleweed]

Hi, everyone:

First of all, I apologize for not being active on this forum for quite awhile. Since being successfully treated for my AN over 9 years ago, my life has virtually returned to normal and the forum has been rarely on my mind. This is in part because the few times I've visited over the past year, it seems that all the information newly diagnosed people need can be gleaned from my and everyone else's archived posts. I haven't felt like I had much to add anymore.

However, I think people do appreciate hearing from people who were treated long ago to see if their treatment's successful results have been sustained. Thankfully, mine have.

To wit, I had a followup MRI in November of last year (three months ago). My treated AN is stable in size. I'm very fortunate that it has shrunk 78% in volume since receiving CyberKnife treatment from Dr. Steven Chang (renowned Stanford University Medical Center doctor) 9-1/2 years ago. My balance has returned to normal (I had a severe balance deficit before being treated) and I have retained serviceable hearing on my treated side. For anyone considering radiation for treating their AN, I very highly recommend Dr. Chang. He is the most skilled and caring doctor I have ever met. I can't say enough good things about him.

My small hypoglossal brain tumor remains untreated; it has not changed in size or dimensions since being diagnosed 10 years ago, and I'm happy just to leave it be as it causes me no symptoms or other harm.

I'll try to remember to visit the forum again in the coming months, but can't promise. Life is full and busy - and wonderful.

Good luck to all on your path to healing.

Best wishes,
TW

[Gtmochi]

Thank you for sharing this! Like many on this forum, I've been trying to figure out my path of treatment, and hearing how someone is doing post GK is wonderful. I've sent my scans and reports to Dr. Chang, and am awaiting his recommendation. Meanwhile, I am  carefully (read obsessively - ha!) weighing surgery vs. GK. 

[notaclone13]

Thanks for sharing your positive outcome of Cyberknife treatment. It is always helpful to those of us in W&W that may need treatment sooner or later to hear positive stories. Now that you are 9 years post treatment, how often will you require MRIs? Also, have all of your MRIs to date been with contrast?

[Tumbleweed]

Now that you are 9 years post treatment, how often will you require MRIs? Also, have all of your MRIs to date been with contrast?

Sorry for my late reply, notaclone13. I only visit this forum every few months now (sometimes less often). I'll try to remember to come back more often.

To answer your questions, I am now on a 2-year schedule for followup MRIs. It might be less often if it were not for my second (untreated) brain tumor, a hypoglossal schwannoma. Since it's not been treated, Dr. Chang wants to see scans every two years. All of my brain MRIs to date have been done both with and without contrast.

Best wishes,
TW

[mwatto]

Hi Tumbleweed I read all your posts - I had CK 18 months ago and very bad insomnia. Did yours improve? I am on compounded prescribed melatonin.