seeking info about microsurgery post Gamma Knife

[girlfromthenorthcountry]

Hi,

 I am wondering if anyone has had microsurgery post Gamma Knife and is able to share their experience.  I am four and a half years post Gamma Knife and my tumor has grown substantially. I've read the medical literature on salvage surgery, but wonder if anyone on the forum has experienced this.

 I have been told that in my specific case any surgery would be difficult as my tumor is compressing the brainstem as well as the root of the trigeminal nerve and I have had facial nerve issues even before my tumor was diagnosed in 2012. I also had significant brain edema that became apparent a year after the gamma knife. 

Thanks!

[Patti]

I have not experienced that and hope that question never arises, but I am very interested in what people say.  I had microsurgery in 2000 and it grew back in 2015.  I had stereotactic radiosurgery 18 months ago and am waiting to have an MRI soon.  I often wonder what will happen if it regrows.  Do you live in the north country of NY? Where did you have your procedure?

[girlfromthenorthcountry]

No, I live near Lake Erie in Ohio.  I've been looking at articles I find in PubMed on microsurgery after Gamma Knife but I haven't talked to anyone who has experienced it.  I'm sure I can't be the only one who may be in this boat!

[Patti]

I hope you get some answers!

[JLR]

Hi I had CK 2010. In 2016 the AN was growing. On brain stem and most of all pressing on trigeminal nerve. That pain is excruciating. I had surgery on Nov.1.  95% was debulked via retro sig.  5% was left as it is tangled on my facial nerve.  Although the nerves were tested throughout the surgery the facial nerve was ultimately damaged. The surgeons were able to get the tumor off the trigeminal nerve. I have zero pain. I also have very little feeling on the AN side. I think there was a degree f difficulty since it was a radiated tumor. But the good news is that I'm (very) slowly recovering and my feeling is coming back. I spent 7 weeks in rehab hosp getting my balance back but I'm walking perfectly now. Still out patient rehab.  I know now that a slow growing AN getting CK or GK doesn't always work. The radiation is a quick easy painless fix but ultimately removal is the way to go. Bottom line is you'll be fine. Get that AN out. Make sure you have the best surgeons in the best facility. Oh by the way by the 2nd day after surgery I only needed Tylenol. All the best and you can contact me anytime. Joan

[girlfromthenorthcountry]

Hi Joan,

Thanks for your reply.  I'm  glad to hear you are walking again and that your trigeminal pain is gone. That's worth a lot.   it sounds like your recovery has been a long process.  I guess I am discovering that there are more of us out there who had radiation that didn't work than I realized. Knowing what I do now, I wish I had chosen surgery initially.  I guess  both  treatments have their risks.  Thanks again for sharing your advice and optimism.

[ANSydney]

All three treatment options have their risk!