My personal gamma knife experience 1-24-13

[robinb]

I started the gabapentin 6 days ago and am now up to 100. Mg. 3  times daily.

Hi Cathy-

It seems like your dosage hasn't ramped up yet; I increased gradually to 400 mg 3x daily by day 17; started at 100mg 2x then 3x, etc. So maybe you haven't given it enough time. Push Lana for weekly consults via email or phone.

I did see a neurologist during this period, they found nothing.

Hang in there and reach out any time for support.

-Robin

[robinb]

I am just a few days shy of my 4 year anniversary post GK and received the following from Dr. Lunsford after reviewing my MRI.

Thank you for your recent communication and the opportunity to see follow up imaging studies. You underwent gamma knife radiosurgery 4 years ago. We are pleased that the tumor is stable if not slightly smaller, with no evidence of recurrent growth. We are very pleased with the current appearance, and would like you to get a new scan done anywhere from 2 - 4 years, if all symptoms remain stable.

So happy with this outcome, and I have lost 12 lbs!

[cathyroe]

Wow! Fantastic!

[robinb]

Hi Cathyroe-

Thank you and I hope your spasms have subsided; haven't heard from you in a while;

For me life is normal and am leading a more healthy and fit lifestyle overall and as a result have now lost 38 lbs; 32 to go to hit goal!

Be well!

[Echo]

Hi Robin, 

Delighted to read that you are doing so well.  Thanks for posting the update.  Always nice to see how others are doing that had GK in and around the same time I did.  I'll have my 4 year GK anniversary this Sept. and I'm also doing great.

Congrats on the weight loss!!!

Cathie

[robinb]

My 5 year diagnosis/treatment anniversary came and went with no fanfare. That's a good thing!

I'm amazed at how many times this thread has been viewed!

Life is better than good, I have lost almost 80 lbs!

Be well everyone!

[SP]

That's fantastic news!! Congratulations and continue to be well.

Stella

[robinb]

Thanks Stella-

For all the newbies, life can get better as you go through this experience. I wrote an article in the current ANA newsletter, Notes, about how my new normal is better than before. Down almost 84 lbs and in the best fitness shape I have ever been in my entire life (and I am 63!)

I remain on the volunteer list, please dm or reach out through the contact info provided through ANA.

-Robin

[robinb]

Wow I haven't been here in a while but this thread has been viewed 8,000 more times since the last time I posted an update!

I continue to be very well; reached my ultimate goal weight of 125 lbs; I lost a total of 91 lbs and I still strength train and/or do cardio 6 days a week.

Life is good!

-Robin

[robinb]

Today is my 6 year ANniversary for my GK treatment. WOW!

I continue to be amazed at how many times this thread has been viewed.

Just checking in with the AN community to celebrate this milestone. I continue to be well, and my Mantra is I Am Healthy and Fit; 64 is the new 24!

I have lost over 90 lbs in the last two years and my fitness level is beyond anything I ever did when I was 24. I work full time, travel 2-4 times a month, strength and cardio train almost every day.
I asked my personal trainer some time ago if my AN had any impact on how we trained and how he made nutrition recommendations for me and he said (konversionfit.com):
“I can’t say anything has impacted any of your journey with me. I think the recommendations that are given can be used for everyone:
1. Exercise to the best of your ability
2. Eat mostly whole foods
3. Focus on energy, mood, sleep, digestion
4. Get better over time (stronger, more athletic, more aesthetic)
5. Stay in your own lane (don’t compare)
6. Anyone with any dysfunction, disability, regardless of gender, age, etc. can get better” 

I shared this day with the ANA milestones, so you can see what I looked like undergoing my GK procedure and today. That's why my new normal is so much better!

Wishing everyone good health!

[Freelander]

All good Robin, inspirational, thanks for the updates!

[SP]

What an inspirational post Robin --- Thanks for sharing!!
It's so inspiring to hear of your improved fitness and amazing 90lb weight loss (over 40kgs in my language).

I am keeping a note of your  excellent 6 point summary..esp no.6

continued great health and fitness...

Stella

[robinb]

Thanks Freelander and Stella; glad you found it helpful; hope you're doing as well!!

[robinb]

Well, 6.5 years post GK, 7 years since symptoms began.

Had MRI a few weeks ago and report from Dr. Lunsford said:

"Dear Robin:   
Thanks for the opportunity to see your follow up imaging studies. It has been almost 7 years since you had gamma knife for acoustic neuroma. I very much enjoyed your note and the Acoustic Neuroma Voyages article you wrote last year. The tumor, of course, has gotten smaller since the time of gamma knife, and there is no evidence of new activity. Delayed activation or growth of this tumor would be highly unexpected. We hope that you continue to do well. I think we have a hearing test with a 40% speech score last reported in 2017 and we would still like to keep a long-term look at this time even though we know this is not useful hearing.
When you get a new MRI scan maybe in 4 years, perhaps should get a new hearing test to see where things stand at that point.   
"

I keep this thread going because I want people to see great outcomes are possible! Still in the best health and fitness shape of my life. Strength and/or cardio train 6 days a week, working FT, travel for business and pleasure 40% of the time! My mantra is 65 is the new 25!

[notaclone13]

Robin thanks so much for posting this update. So encouraging to hear about good outcomes. Even more impressive is your dedication to fitness. You have inspired me to re- commit to my own weight loss and fitness goals despite being over 65.