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Radiation / Radiosurgery / Radiation for fast-growing tumor?
« Last post by RGG on March 28, 2024, 10:16:04 am »
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
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Radiation / Radiosurgery / Re: Fractionated radiation therapy
« Last post by dominic12345 on March 27, 2024, 06:58:03 pm »
Drink ginger tea,
chew ginger gum.  See a Vestibular therapist immediately.  God’s speed and prayers
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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.
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Post-Treatment / Re: Post surgery bicep tendonitis
« Last post by Greece Lover on March 27, 2024, 07:31:45 am »
How long ago was your surgery?  I definitely had a sore neck for weeks, along with some other body discomfort.  My understanding is that that strap you down pretty good, so that there is not some unexpected movement during surgery, which could cause serious problems. 
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Good luck to you and let us know the outcome.

Take Care,

Dan
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Post-Treatment / Post surgery bicep tendonitis
« Last post by marilynvanbrunt on March 26, 2024, 11:10:27 am »
I was wondering whether anyone else is experiencing bicep tendonitis after surgery.
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Thanks, and yes I watched Dr. Chang's webinar before making my treatment plan. I also got to attend a (Zoom) support group he was in; great team at Stanford! Too bad they schedule many months out. . .
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Don, I very late posting my response here and sorry for that! I’ve had two facial reanimation surgeries since my original post and I’m doing much better. Still have obvious facial issues, but much better. If you go back and read the June 2023 newsletter patient story you can see my story and see photos of before and after.
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I’m a bit late posting this update, but Phonak has released the update that allows the user to control the hearing aids via the Smartphone app. Finally!! I’ve had my Phonak CROS system since 2022 and I’ve had a very good experience with them. My only minor complaint is the rechargeable batteries will not last a full day if you start them up early (8:00am). I get about 10 hours on the charge, so I have to top them off late in the day if I want them to last until 10 or 11pm.
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AN Community / Re: Is there anyone on here from New Zealand?
« Last post by Director on March 22, 2024, 08:42:19 am »
Hi kiwi,

I'm sorry no one has responded to your post.  Have you reached out to ANA New Zealand?  I'm providing their info below. I hope this is helpful.

The Acoustic Neuroma Association of New Zealand
https://www.acousticneuroma.org.nz/
P.O. Box 222
Taumarunui
New Zealand
info@acousticneuroma.org.nz
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