I was aware of this article and it fits my story just like it was written about me. I am 74. In the 1950s every kid had their tonsils removed. My androids became swollen and my mom took me to an ENT when I was about 4. I had at least 2 episodes of treatment with X-rays. They taped lead plates over my eyes and treated me.

When I was about 40 a doctor found a tumor growing on my thyroid and half of my thyroid was removed. In 2009 my AN was discovered and had a translab surgery 2010.

My AN doc said the X-rays I had in my youth probably caused my thyroid tumor. By the way it was benign.

It was a tough time for me back then. I had a stroke in 2009 caused by a hole in my heart (PFO). Had a surgery to close the hole and 6 months later my AN was discovered. I had excellent recoveries from a living a great life. Count your blessings that we have talented docs, nurses, incredible equipment that can change our lives. Every day is a blessing.

Its hard to believe that 10 years have passed since I posted. I apologize to those I did not respond to after I left this site. I can tell you that my journey truly became the new normal. All my follow up visits were as expected. Slow dying of the tumor form the inside out. It appeared like a sponge on the MRI's showing holes and a shrinkage. The worst part of this journey is the tinnitus which I had before the treatments. It is definitely life changing. At first unable to get to sleep, tasks were hard to accomplish, and even reading books was difficult. The PCP I was seeing did some research and suggested I try an off label drug to calm my brain before going to sleep. It made all the difference in the world. I was hesitant to try it as I had read numerous concerns about taking Xanax, but it worked for me. I tried every therapy I could find for some relief but being SSD my options were limited. Balance is good until the lights turn off. As long as I have point of reference, as in the headlight of a motorcycle, I am good. Turn off that headlight on a dark country road and I am toast. Thank goodness modern motorcycles have the light on whenever the bike is running. If the head light burns out I still have the two running lights shining forward. All in all this has been a difficult journey but I am still on two feet and two wheels. God is good and He has guided my path. Probably the worst part of this is being SSD. Noisy rooms, restaurants, several people talking at once, etc all put my brain in a state of confusion. We have attended several weddings and I had to leave the reception due to the noise levels. Another one in April and I am going to enjoy the food then leave when the festivities get going. The most difficult part is realizing that you cannot let this little bugger define you. You do what is best for you and make your life not only bearable but enjoyable.

Hello,

I've been monitoring the regrowth of my AN after surgery for several years, it was growing quite slowly (~1mm/year), so I was happy to watch it for a few more years before taking action. This turned out to be a bad mistake, as over the past year it suddenly grew around 8 mm (total about 1.4 x 0.7 cm now) and exited the IAC.  My surgeon previously recommended I do radiation for the regrowth.  I read however that fast-growing tumors have a much lower success rate with radiation (closer to 70% instead of >90%), so I'm thinking if I should consider a second surgery instead.  I'm meeting with a GK radiologist next week, but I'm not sure if they will consider this fast growth rate or tell me to do radiation anyway.

Has anyone had experience with doing radiation on a rapidly growing tumor?  Or had a radiologist mention to them that they don't recommend radiation for a rapidly growing tumor?

thank you in advance,
Rumen

I had translab. surgery in 2018 for a 3.5 cm acoustic neuroma, they left a portion that was wrapped on the facial nerve, 1.3 cm after surgery.
In 2021 MRI showed regrowth to 1.7cm, received Proton Therapy Radiation in 2022. MRI shows spots of tumor necrosis from radiation on MRI in, 2022-2023, at that time they were unsure if the tumor was swelling as it was dying or if it was actually regrowing. Most recent MRI shows rapid regrowth 2.7cm, brain edema and brainstem compression. I just found out I will need to have immediate surgery AGAIN on the tumor, although this time they foresee not being able to save the facial nerve and recommending a complete removal of tumor, debulking tumor not considered an option based on my case. Likelihood of total facial paralysis on right side is great, although grafting or other facial nerve reconstructive procedures could become available later down the line.

I'm told that a second surgery comes with many more complications, especially for a AN that has also been radiated.

I do have complete trust with my surgeron Dr Caetano Coimbra, Dallas Texas. My first surgery was successful I had no complications with my facial nerve, but for whatever reason I have a very aggressive tumor that continues to regrow. He has done many second surgeries from patients who had a different doctor the first time. In his 34 plus years I will be his second case ever, that he will have to perform surgery on again.

Has anyone on this forum had a similar experience? Or had surgery after radiaiton.

Pretty devastated to being going through this again. Im a 42 year old mom, with three young boys.

Good luck to you and let us know the outcome.

Take Care,

Dan