My personal gamma knife experience 1-24-13

[robinb]

Thanks Adam; I hope you are feeling well.

Started reduced dose of Gabapentin 100mg 1x daily.

Had an eyebrow wax and facial yesterday with no tingling or twitching, let alone a spasm, so that's good!!

[robinb]

I cant remember if I ever posted this anywhere.

I had Bells Palsy almost 20 years ago. I had no records and could not remember if it was left or right side. All I remembered was which emergency room I went to and that the doc I saw prescribed Prednisone. I had no further tests as it began to subside in a week and was gone in less than a month. The emergency docs  recommended a CT, but I don't think I ever did it. I did see the neurologist for follow up and additional Prednisone.

When the AN journey started, all of the docs guessed it was the right side, same as my AN.

I contacted the hospital system to try and find the records and they just arrived this week.

Lo and behold, the Bell's Palsy was on the left side, although I did report numbness and tingling on the right according to the records. But perhaps that's because my left side was paralyzed from the Bells'.

I was trying to find some correlation, but there is none that I can see.

[robinb]

Good news; another month has gone by with NO SPASMS, not even a twitch!!

Travel has been minimal but I have two flights tomorrow so will take an extra dose of gabapentin tonight. New job going well.

The only thing new, noticeable is that I am getting headaches several times a week, pronounced on the AN side. Tylenol provides immediate relief but I emailed UPMC for advice. Also asked them if I should get another MRI before next July.

Still fluctuating tinnitus, bad hearing on AN side, nothing new.

Will post again if anything to report.

Be well everyone.

[Echo]

Excellent news Robin regarding the spasms!  Hope you continue to do well.  With any luck the headaches will disappear as well.

Cathie.

[ASG]

Congrats on being spasm free, Robin!  Keep grindin'.

[robinb]

Thanks Adam and Cathie for the support; hope you are both well.

I heard back from Lana in Dr. L.'s office today. They said no immediate concern over the headaches but if they persist will authorize MRI around my 1 year GK anniversary. (probably more for my own piece of mind) Also I can start trying to reduce gabapentin to every other day and to gauge my reaction and stress/travel levels and adjust accordingly.

Happy Holidays!

[robinb]

With Thanksgiving approaching I just realized I rec'd my diagnosis one year ago and was spending this weekend (albeit the holiday was earlier in 2012) frantically researching treatment options.

I was trolling this forum like most do before having the courage to register and make my first post.

My news of AN was given to me on 11/16/2012, the Friday before Thanksgiving.

I was able to send off my MRI's to various places the day before Thanksgiving so they would have them the Monday after. By then I had almost 100% ruled out surgery and was able to enjoy time with my family.

By Christmas, I had my appointment ready to go to UPMC.

So here we are, the weekend before Thanksgiving again, one year later.

I wish everyone a happy holiday season. Take time away from your AN and enjoy the holidays with family and friends!

[Fender3131]

I too, had gamma knife with Dr. Lunsford. I am nothing but 100% satisfied with the whole experience. I had a small round of slight vertigo for a couple days, about three weeks after the procedure, but since then I feel great. I have a small amount of numbness/sensation on the AN side of my face, but nothing I can't live with. My AN was 2.8cm and very cystic.

Great news for you! Good luck moving forward.

[robinb]

Time for an update of more good news;

No more spasms!!

I was a little nervous as over the last 5 days I had six flights; so added stress of that plus missing connections and delays. I did feel a little tingly and tightness in my face a few times, but that was the extent of it. Prior to trip I increased the dosage of the gabapentin to 100 mg 2x daily. Will go back to 100 mg 1 x every other day.

Happy Holidays and best to all for 2014.

[mesafinn]

Hi Robin,

So very glad to read your travel is behind you and that you are seemingly spasm free!!   That is fantastic--and hopeful--news!!  Your updates are welcomed and appreciated.

Hope you are great, great, great.

P.

[ASG]

Congrats on being spasm-free, Robin!  It sounds like you've turned the corner and you're post-GK lifestyle is awesome! 

Are you having your one-year MRI in January?

Adam

[Derek]

Great to learn of your successful outcome Robin. Very best wishes to you too for a joyous Christmas and continued success in the New Year.

Derek

[robinb]

Thanks all!

I am not sure when I will have next MRI; doc said a year from the 6 mos, which would be 18 mos from GK. When I was having all the spasms and the amount of swelling shown on the last one, I was thinking in Feb, so 1 year after GK. Doc will support that if I want to do so.

Being I feel really good, I may wait. Hearing and tinnitus fluctuate, but the AN side hearing is bad, difficult or rare word recognition.

[Petrone]

Hi Robin,

Congrats, on your continued recovery and positive outlook!  You've set a great example on this forum of someone who has weathered the adversity of post-GK side effects with courage and aplomb.  I found strength from your shared experiences and I hope others who have or will opt for GK will read your journal to help find the courage within to get through these and other post-GK side effects. 

Thank you!
Petrone 

[robinb]

Hey Petrone-

haven't heard from you in a while; hope all is well with you.

P-

a little more travel; flying to Vegas tomorrow and mtg up w/family for Xmas; hopefully my luck will continue and I will return w/more $$ then I arrive with! Should be interesting to see if the noise or obnoxious people in the casino bothers me; if it does I can turn a deaf ear (hahaha; a little AN humor).

Going to up the dose of the gabapentin again starting right now...