Issues after GK

[xjpaddler]

Hello,  i am 39 year ild male and was diagnosed with a facial schwannoma in july of 2014.  While stuck in the desert in colorado, i had what we thought was a stroke. After seeing the doc and having mri's done we learned of the tumor thhat was roughly 15mm by 21mm and has a small extension roughly 5mm that extends into a he right auditory canal. I had GK di e in august of 2014.
    Things seamed to be getting better, and was back to wirking pretty much full time. The tumor really wasnt shrinking, but wasnt growing either.  Over the past 3-4 mo ths things have really went down hill balance is really of, facial spasams that also go into my neck, headache and ringing in my ear, and starting to notice liss of hearing in that ear.  Its to the point i have not been to work in 4 weeks, and i do not feel comfortable trying to drive.
     I have went back to see the doc and the tumor is ( swollen )  he says it is not growing but is obviously irritating different nerves, and that i need to learn to live with this until it fades???
He says because of the location and  type of tumor that to have surgery to remove would be much wirse than the issues im now having.  He has said i would loose all hearing in my right ear, all facial function on the right side and would likely be on a liquid diet due to issues swalloing, and also the loss of my right eye.
      Honestly at this point im kinda lost. The symptoms are wirse now than when i originally went in. My job has been great theough all of this but at this they are suggesting i look into disability, i have worjed this job for 19 years.
      Has anyone else gad these issues?

[xjpaddler]

Also i should apologize now for my typing and spelling.  Seams my positioning is of and i miss things a lot.

[cathyroe]

Oh my gosh, I'm so sorry to read of your troubles. I had GK in July 2014 and also feel my tumor swelling and nerves being irritated . I hope it's swelling and not growth ! I'll be getting an MRI to see. I was pretty okay for a while, then I thought maybe the weather changed and the barrometor was causing discomfort . I will keep you in my thought and prayers when I do them for myself and all of us here. Good luck and stay in touch!

[PaulW]

I don't know why but quite a few people, me included seem to go through a bad patch around 24 months after radiation. I guess when we start the process we are accepting that is a 24 month process but we don't expect things to be worse all of a sudden at 24 months. It seems to me that your facial scwhannoma is now doing all of the lovely things an AN does. My personal opinion is that these symptoms will disappear in time, listen to the docs advice and continue to monitor it.
You maybe only a few weeks away from permanantly being relieved from your problems. A course of steroids may help. But I am not a fan of those things...
I had greatly increased symptoms at 5,12 and 18 months. The 18 month was pretty mild and felt pretty normal from 18-24 months... So I thought that was it... 24 months done
At 24.5 months balance went off followed by sudden hearing loss.. Took about a month to go away and my hearing mostly recovered over the next 6 months. Since then it's all been pretty good.

[xjpaddler]

Thank you for the replys,  after doing more research, it does seam this is kinda a normal thing.  I am getting a bit more concerened because my spasms are getting worse when they happen. I had the worst one to date a few nights ago.  It happened while sitting on the couch talking to my wife. Lasted well over 10 minutes probly closer to 15 and the after effects/ feeling that it was going to happen agin lingered for several hours after that.

[caryawilson]

Not sure if this is new to you or not. However, the facial nerve has five branches on the face, going to the forehead, eye, mouth, and the NECK.  So, if you are having spasms of the facial nerve, I could see how it easily affects the hearing, balance, ringing AND give spasms on the neck or anywhere else on the face.

However, as harsh as this sounds, some of these symptoms you need to do your best to live with them.  For example, I have loud ringing daily and complete facial paralysis.  However, my nerve spasms are more minor, but more aggressive nerve spasms are NOT unusual.  As discerning as they are, and I know it's tough, do your best to ignore them.  The head aches must make this even more unbearable.

Personally, I would seek a second opinion with a facial plastic surgeon and a brain surgeon.  The facial plastic surgeon may be able to help alleviate some of the spasms, with temporary treatments.  Not sure, but I would ask.  You should seek a facial plastic surgeon that has experience with facial nerve reanimation.  I'm sure there are many. I went to Dr. Boahene at Hopkins.

I agree an AN or Facial Schwanoma surgery could impact the eye, swallowing and tongue nerve. I had a high probability in my case, but tumor was 4.5cm. Surgery after radiation, I'm told, is more difficult.  The surgeon would be able to draw an initial assessment using your MRI. 

[mcrue]

However, as harsh as this sounds, some of these symptoms you need to do your best to live with them.   As discerning as they are, and I know it's tough, do your best to ignore them. 

Wow!

I would get as many "second opinions" from the best-and-brightest doctors. I've read on this forum Gamma Knife can be a 5-year journey, although typically side-effects manifest in the first 3-to-9 months.

[Blw]

I agree with Paul. My symptoms kicked up at 5 months post GK.

[jim j]

I have a question? I had a large AN removed in 2003 and as I said it grew back in little by little over the years I knew they left 1 and I say 1 small piece left so not to damage the facial nerve. I just had Gamma knife on the smaller An that grew back I just had my 8 month checkup and I had some good news the tumor is dying it is black in color in the middle and white around the edges. That I was told is good. Then I was told but there was another piece which was never mentioned it was left on the facial nerve right were the nerve enters the brain stem. It was a Cyst that is now larger I was shock I said a cyst right near the brain stem and on the facial nerve yet it was also a piece the original tour that was left and they did not see on the last MRI??? I asked how was i not told there was a piece there and why would a Cyst that is larger then the AN was appear now after Gamma Knife? Has this happened to anyone? I was told this is rare and needs to be watch. When I asked why well more surgery then why did I due Gamma knife. All i ask has anyone ever had this happen to them? Thanks Jim

[cathyroe]

HI there, I'm just checking in to see how you are doing. Did the facial spasms subside? You and I are both having similar issues, and had GK around the same time. Mine was July 2014. Now, at 2 years I have had some facial spasms, tumor is larger, wake up afraid every morning, like... what the heck is next?
Anyway, just revisited you post and hope you are getting better. I think these things do fade in time. Just a rough patch.
Cathy