GK 3 days ago -- mild headache. . .

[Scribbler]

Feeling very relieved to have GK procedure over with!  It was relatively painless, I traveled to UPMC, where I got great care.   I've known about my AN for 10 years, it was discovered as an incidental finding when I had an MRI for another reason.  I have had NO symptoms--my hearing and balance are fine. . .But over 10 years of "watchful waiting" my tumor grew from 2 mm to 1.2 mm, so it was time to do something.   I researched for a long time before deciding on GK at UPMC.  Now I'm just taking tylenol for the headache.   I'd be grateful for any advice on handling this next stage of the process--more "watchful waiting" to see what the effects of the GK turn out to be.

[arizonajack]

You might not have a next stage.

It's rare to be symptom free and retain all your hearing while the tumor grew.

Mine was 9mm when diagnosed and I had the loss of hearing, the balance problems, dry eyes, and tinnitus. It was 1.3cm when I had my GK 13 months ago but just within a few months before the GK I was getting some relief from the balance issues and the tinnitus.

As of now, whatever is left of my symptoms are barely noticeable, other than still being deaf in one ear.

Anyway, best case scenario for your future is the periodic joy of seeing the MRI images of your dying/dead tumor.

[mesafinn]

Hi Scribbler,

I, too, am a UPMC GK Alum and concur the patient care there is terrific.   My "recovery" advice is to listen to your body.  Fatigue set in for me (something I still struggle with nearly 9+ months out).  It's not overwhelming, but it's real so remember that you have been through radiosurgery and it does take a toll on the entire body.   Sleep.  Rest.  Recuperate.

Tinnitus also might set in, and it will take awhile to adjust to that "side effect."

As we each react differently, you may have other questions and symptoms pop up.  There's a great resource here, and several folks here are also UPMC alums although I'm convinced there are great resources throughout the country.

I wish you very well during your recovery and much peace!

Patrick

P.S.  I asked Dr. Lunsford from UPMC to write me a steroid script so I could have "on hand" in case intense swelling did occur.  About 90 days after GK, I did start to have hemifacial spasms which lasted about 3 months before subsiding.   But he encouraged me to start taking the steroids since I had them in stock.  I opted not to--I didn't want the additional side effects from the medication--but it was comforting to know I had them at-the-ready if I needed them.  The steroids can also help if you take them immediately if you notice any sudden hearing loss.

[Scribbler]

Thanks so much for your kind replies.  I realize my situation is unusual--as I had NO symptoms and only learned of my tumor as an incidental finding, then watched it grow over 10 years of MRIs . .  Dr. Lunsford did give me an Rx for steroids to have on hand.   I'm grateful that, at least for now, I don't feel any different than I did before my GK.   But I appreciate the advice to be mindful that I have been through radiosurgery and need to be kind to myself.    I'm a yoga teacher, so I'm very used to listening to my body.  .  .   

[leapyrtwins]

Strangely enough I thought I'd have a whopping headache after my surgery, but didn't even have a mild one.  Go figure 

Sounds like you are doing well, Scribbler and that you made a wonderful treatment choice.

Hope all continues on a great path!

Best,

Jan

[ampeep]

Hi Scribbler,

Sounds like you had GK a day after me.  Second messafinn's suggestion about getting rest.

Hope your recovery continues to be uneventful.

Keith

[ewhitese]

Hi Scribbler,

Welcome to the post toastie club, I am also a UPMC alumni.  I was in wait mode for about a month before I asked myself (waiting for what?) for the tumor to grow bigger and narrow my choices on treatment?  I had GK surgery in August and am going end of the month (feb 2014) for 6 month MRI.  Hoping to see positive results.

I had hearing issues for approximately 3 years before discovery of the tumor.  I had a respiratory issue last year lasting about 2 months and during that time the ENT found the tumor through CT scan and MRI while preparing for sinus surgery.  Prior to surgery I only had hearing and tinnitus issues, hearing at 80%.  Post GK symptoms appeared slowly and randomly around month 3.  I would get dizzy, had trouble walking a strait line down a windowless hallway, tinnitus became troublesome.  I began to lose voice recognition and started noticing I was reading lips to understand conversation even with a hearing aid.  I heard random phantom voices in the middle of the night or when very quiet, kind of unnerving to here a conversation with no one there.  Not that I understood the sound it just sounded as though a group of people were carrying on a conversation around a corner somewhere, only lasted for a while it is gone now.

By month 4 I had lost all but 20% of my hearing in the AN ear.  I am getting used to it and not so bothersome as it was.  I have been in Vestibular rehab for 6 weeks and that has helped to manage the balance dizzy issues.  By 4 months I started having fatigue issues as well.  I notice stress brings on fatigue but sleeplessness as well.  Not sure how that all works but the more fatigued I am the harder it is to fall asleep.

I am currently at 6 months I am becoming accustom to my tinnitus managing my imbalance and dizziness.  I am getting better at predicting the weather now, I get a headache just before the weather changes.  I am currently off work due to Bronchitis, which is where I started my AN journey a year ago January.  Plan to go back to work on Tuesday.  I am quick to make a Dr appt. now, not going to relive the last respiratory saga.

I am confident the issues will subside or I will become adjusted to them.  I already am less surprised when they come.  Fatigue is the hardest for me to deal with, I am used to being pretty active and just can't go like I did just a year ago.  But what I see in these pages is a general return to normal in a majority of posts.  That gives me hope and makes me just keep moving.

I hope I haven't caused you dismay, you should take a look at the sections about hearing loss, balance etc. I began to discover an explanation for my symptoms as I read others descriptions.  I was less overwhelmed as I could explain my issues.  I am keeping a diary of the days I experience issues so I can look back and follow my progress and learn the patterns, maybe I can discover triggers etc over time.

I guess what has helped me most is a self realization that things are different now and I am going to have to find ways to work around it and incorporate it into my daily routine.  I don't notice the issues as much now although they are still there.  I think they are subsiding but that might just be me getting used to them.  The only thing I did change was putting my ski's away for the winter.  I think I should get better at balance issues before heading down the slopes again. 

I am embracing my new normal and testing my new limits, some I except, some I will fight and some I will replace with new stuff.  It's not the end of the world it is just one of those transitions in life we all will face as we grow older anyway.  This one just happened really fast.

Good luck, keep the faith, know you aren't alone on this journey, it isn't the end of the world just different than it was.

Ed

[Scribbler]

Thanks all for your support!  I'm now nearly 3 weeks post GK and am grateful to feel no real difference in my hearing or balance as a Postie Toastie.  What I am struggling with is something I'd been dealing with for awhile, which is atrial fibrillation.  I was born with a congenital valve abnormality and had open-heart surgery in 2008 to replace my aortic valve.  That went well, but two years ago I began having occasional episodes of atrial fibrillation--people who have had heart surgery are at higher risk for this problem.   I'd been having a fib episodes about 2 or 3 times a month before my GK, now I'm getting them every other day.   Don't know if it's stress, or a potential radiation side effect but it's a struggle as I'm not able to do things I want to do (like my morning 3-mile walk) when I'm in a fib.  Anyone have any thoughts about the connection between Afib and GK?