Surgery and then radiation

[JLR]

Hello all 3 months post op. Had retrosigmoid. Left 5% on facial nerve. The 5% is now grown considerable. Dr now recommends radiation to stop the growth. I had CK in 2010. Tumor started to grow after 5 years and had to have surgery. Anyone have experience with radiation after surgery.  Appreciate the help.  Joan

[ColleenS]

Hi Joan, not sure if you are still on here, but that is my story too. Had surgery 16 months ago and now the tumor is almost back to original size. Having stereotactic surgery in a week for 5 sessions.

[Patti]

yes, i had radiation after surgery.  it came back after 15 years so i had it zapped 3 years ago. there has been no shrinkage but, more importantly, no growth.

[notaclone13]

Joan, I posted a response on a thread started by Colleen regarding fractionated radiation to control tumor regrowth. I think you will find the information useful and I think it applies to both hers and your situation. Here’s a link to the publication:

https://www.redjournal.org/article/S0360-3016(02)02763-3/fulltext

It sounds like they have had very positive outcomes using this approach at Johns Hopkins, one of the best medical centers in the country.

[JLR]

Hi all, thanks so much for your responses.  Nov 1 will be2 years post op.  The regrowth has remained stable. Have MRI every 4 months. I do still have facial issues. Eye still dry but can now close easily but I do have synkensis. Had therapy, Accupuncture, more facial excercises etc none have worked. I think it's time that has to heal. My forehead was numb and now I do have feelings there but at surgery site remains numb. Re additional radiation for regrowth my biggest fear is that my facial paralysis would get worse. And any progress would go back to square one!  Any direction about this.  Good luck with your radiation. Please keep me posted. I wish all continued good health. Joan

[Sanderson]

I have the same concerns. Should I be seeing a neurologist and my neurosurgeon? My eye closes but I can’t blink or smile. Will radiation seal the deal in my ability to improve with my facial paralysis? I feel stuck!

I have asked this question before: Are there recovery stories or just getting used to circumstances?