Anyone had a second surgery for regrowth? Experience, Recommendations, etc

[Michellebelle007]

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.

[james e]

Answer to your first question about regrowth is no I have not had regrowth, so no 2nd surgery.

My question is do you have a 2nd opinion from another qualified doctor?

Prayers out for you.

[babilarson]

Hello my friend, I am aware this is a scary time for you. Hopefully you have had your surgery by now and everything is going as well as expected. That being said I know this is a whole new world for you and much adjusting to your new life and normal if indeed it has resulted in the right sided facial paralysis as expected. I also had a large/aggressive AN that resulted in right sided facial paralysis and right sided deafness. Long story short, in the end I had to have had to have: 1 original surgery, followed by a 2nd because of aggressive regrowth, followed by 28 rounds of max dose radiation, unfortunately that did not do it as what was originally thought to be the normal “swelling process/dying” of remaining tumor tissue ended up being regrown once again requiring a 3rd surgery. Although this is an extremely rare event and I do wish you all the best, I completely understand there will be new normals for you. Some things I have learned that may be helpful to you knowing sooner than I did was 1- eye care: lacrilube type stuff, punctal plugs, eye weight ect all unfortunately did not work for me personally but what is called a “ mini scleral lense” was a game changer. In combination with other things in regards to eye care but the mini scleral was an important one! If there is anything I could possibly answer for you or any issues I could help with I am more than happy to help if I can. Just an fyi, this journey started in 2014, it has been 10 yrs, I am an LPN by trade and have gotten myself back to work part time(because of chouce options at my particular hospital) with minor adjustments, a little bit more difficulty than I realized but not too an extent of being undoable👍🏻I am also from Canada, this site just seemed to have more information options than the Canadian version. All the best to you my friend, you’ve got this 🙌

[Stinkyinks]

2.9 neuroma removed 2021 after months of missed diagnosis. Surgeon did not remove all due to facial nerve wories. I have continued to have symptoms such as dizzyness, memory problems, and of course deafness to affected ear. Now again having ear pain and vertigo, last MRI showed 1.4 cm, but am having difficulty getting treatment, probably as I have had no to scant insurance, (I was only diagnosed the first time in the ER, because of a suicide attempt). My question is if anyone else has had difficulty having anyone take them seriously, and whether having radiographic is effective. I do NOT want to have surgery sgain.

[Director]

Hi Stinkyinks,

Sorry to hear that you are experiencing regrowth.  Some patients that experience regrowth do have radiation. The ANA has a Regrowth Support Group as well as peer mentors that have experienced regrowth and required another treatment.  Reach out to Melanie at the ANA for more information.  melanie@anausa.org

The ANA Team