one year post GK

[cathyroe]

Hello my AN friends,

I am here to report good news! I am now one year post GK and feeling just fine.
I must say though, that it is all a little bit two steps forward and one step back. At times, the tinnitus just rages, the pressure is uncomfortable, my face feels weird.... but then it passes. Maybe it’s the weather, the barometric changes. But all in all, I am MUCH better  than I was a year ago.

Admittedly, the stress of trying to figure out what to do makes a person downright sick. So that is no longer part of my everyday thought process. After deciding, things got considerably better just from making a decision.

I am so grateful that I got to go to Dr. Lunsford at UPMC for GK. His reputation gave me confidence. Those people at UPMC really know what they are doing.

It was a tad rocky at times during the past year, but like I said, the two steps forward happen after that one step back. One of the rocky days was after my six month MRI where the report showed that the tumor actually got bigger. But Dr. L said it was swelling, the tumor is injured. He told me to hold off on the one year MRI and get it in November.

For the most part, I think my tinnitus is less than a year ago. And my face doesn’t tingle and my eye no longer twitches. I really think the GK is working.

We all know that GK is not a quick fix, but delivers it’s benefits in time. Time will tell. But my gut feeling tells as well. I think it is working.

Good wishes to all of you, and I hold the vision that we will all get through this. Yes, we are in the club that no one wants to be in ... but since we are here, we have each other at least.  My thoughts and prayers go with us all and I hope to continue to be the messenger of good news and give those thinking about GK a hopeful outcome to envision. So far, so good... or at least not worse.

Cathy

[SueLL]

Hi Cathy - Glad that you sound stable and content with your GK decision!  You might recall that I happened to be at UPMC for GK with Dr. Lunsford the same day that you were.  I don't have much to report, but I thought I'd add to your post so that others can learn from our experiences.

I'd definitely agree that the first year has been a mixed bag.  Since I was basically asymptomatic with some slight hearing loss at the time of GK, I have been disappointed to have suffered severe hearing loss, numbness in my AN-side cheek and tongue, and fluctuating ear fullness.  I don't feel bad, but I rarely feel good.  I just try to ignore the discomfort the best I can and am working through hearing aid options.  I had/have a medium-sized AN, but if I had it to do all over again, I would have waited as long as safely possible before treatment.  Of course, that is hindsight talking, and the treatment decision is a tough, no-win situation for most of us.

I'll have an MRI next month - future shrinkage is what will make the GK worth it.

[Echo]

Hi Ladies,

Cathy, you summed it up perfectly when you said the recovery process has been "two steps forward and one step back".  My two year post GK anniversary will be in Sept. and I have to say the first year was the toughest.  I struggled mostly with exhaustion, the usual wonky head, some ocular motor issues and balance issues.  I have experienced a great improvement during this second year, however I have to admit that while some symptoms have completely vanished, others have appeared.  Lately I've had a weird pressure feeling coming and going in my head - worse when lying down.  I suspect there is some mild swelling going on or like you have suggested, the barometric pressure could be causing some of this weirdness.  For the most part I am doing great, and look forward to continued improvement.

Sue, I hope things improve for you soon.  I also had some numbness on my tongue post treatment but it disappeared very quickly and did not return. Lets hope you just need a bit more time for yours to go away.  I never noticed a change in my tinnitus, and my hearing remained usable, but  not great.  Word recognition in my AN ear went from 40% at time of treatment, to 20% six months post treatment and then at my one year anniversary, it was back up to 40%.  Have you checked out the Phonak Bi Cros?  I started wearing mine 6 months post treatment and it has been wonderful.   

I wish you both the best of luck and I look forward to reading your next reports.

Cathie.

[mcrue]

Thanks SueLL and everyone,

It's stories like these that make me want to "watch & wait" as long as possible if I can, regardless of my tinnitus and high-pitch hearing decline.

Thanks for sharing and best wishes on your continued recovery.

[ampeep]

Cathyroe,

Good to hear that you're doing well & that your symptoms have lessened.  After reading this post, I just noticed that the metallic taste I had has gone away.

[MG]

Hi Ladies,
Thank you for all of your posts on this subject of GK. I still haven't made up my mind on what to do except W&W for awhile longer. My hearing is close to being gone but other symptoms are pretty mild. This is my thrid year of W&W. My AN is 1.3 cm.  Just up in the air about what to do . Taking my time .
Best of luck to all of you and praying for good recovery in the future!

MG (Cathy)   Lot's of Cathy's!