My personal gamma knife experience 1-24-13

[robinb]

Here's my latest update on Neurontin and the spasms;

I am almost three weeks into the 28 day regimen (not sure what happens then, I think I start to reduce the dosage, but have to check in weekly w/Doc). The spasms definitely less frequent and not as strong; sometimes have twitches of mouth and/or eye for a period after, generally not noticeable only that I can feel them.

In the last week, I have had a total of 4 spasms.

The med has reduced my energy level and I think its caused me to gain a few pounds. No other side effects.

Doc has said my tumor close the facial nerves but they still believe this is a temporary thing. Cant believe I am 4 mos post GK.

Be well everyone!

[robinb]

One more thing; I have posted about how wonderful docs and nurses were at UPMC.

Well it doesn't stop there. Their billing department is equally as good. I have one person to work with who is handling all of my claims and sending things back through insurance. Other than paying my initial consult copay I have paid 0!! They have all my bills on hold until insurance has totally been exhausted.

So on the back end, great customer service.

[robinb]

Had my weekly call /Dr. Lunsford's PA to review my spasms over last week. They are pleased w/decline and lesser intensity. After I finish my increased dosage next week, then the plan is for me to begin a 3 week declining dose regimen. They want me to send my spasm log before I do so.

I have ramped up my exercising w/resistance training, core and balance workouts, no cardio yet as the increased heart rate seemed to bring on spasms.

I haven't had any air travel since May 17th, wont have any more for at least another month,

Hopefully they will continue to diminish and be gone after I am done w/this med. Side effect has been fatigue and inability to shed any pounds.

TGIF!

[dtorres135]

I hope to be as good as you. GK June 25th

[robinb]

Hi Dtorres-

I will be thinking good thoughts for you on the 25th! I hope you are better than me w/no side effects at all!

Spasms decreased; only 1 in the last week, so med definitely helping.

[robinb]

Hi everyone-

Hers my update-

After my last post I had two spasms on June 6th, both while brushing teeth.

Then I went till June 14th, when I had two more, but 8 days, so pleased with that. My first flight since May 17h was in between the two.

Flew home on the 17th and had to turn around for two flights the next day.

Had one spasm this morning in shower.

I am not sure if the flights were the trigger, the fact that I am putting on eye makeup and washing it off or a combination of the two are the reason. Also, tapering off the Gabapentin. I still have weekly reviews with Dr. Lunsford's PA, Lana. Fly home tomorrow night.

Other than this, I feel great and really these are still minor annoyances. I cant believe I am almost 6 mos post GK and will need to schedule my first follow up MRI at the end of July.

Dtorres- will be thinking of you on the 25th, let us know how you are.

I saw another thread of costs of GK, will post there soon as I am close to final on all my insurance payouts.

[robinb]

Hi all-

I thought I would give you a "prequel" of how/when diagnosed/symptoms etc. as I have had inquires on this aspect and how I reached my decision. This is more for the newbies.

I travel often by air for both personal and business. In July of 2012, after several flights, I realized my right ear felt like it was clogged up and I could not clear it. I also could not hear well. Like most healthy people, I ignored it and chalked it up to too much air travel.

In August, after a few more flights, realized symptoms still there so went to my internist and was promptly misdiagnosed with a sinus infection and sent home with antibiotics and to call if not cleared up in 3-4 days. It wasn't and I did and then was referred to an ENT doc. Had a hearing test and was at 40% or so. He prescribed Prednisone, said I should consider an MRI. Well, the med worked and a week later hearing back to 90%, so I didn't go for MRI. Fast forward to much more travel, and its now late October and same symptoms, Go back to ENT, hearing low, more prednisone, no improvement. So I go for the MRI in early Nov. More air travel and I go back to ENT the week before Thanksgiving and get AN diagnosis. Long story short, my ENT very familiar w/AN, knows 3 best options are surgery/CK/GK. He arms me w/basic info and tells me I need to do my research and call him with questions.

I discover this great organization and many helpful people and spent about 1-2 weeks talking to folks bu I pretty much had made decision of CK or GK over that first weekend.

Next phase was where and what doc.

So here we are.

I don't post often, but am always available to anyone that wants to PM me!
 

[dtorres135]

Hello everyone:

GK done today at 5:30 AM by Dr. Kondziolka at South Nassau Hospital.   He practices from NYU but Hurricane Sandy did some damage to their equipment.   Staff was professional and comforting.  I walked in very nervous about everything.  My daughter, mom and dad were there with me but I had to get them out the room when prepping me for the headframe, etc because i was nervous and i couldn't put a brave face on anymore so I ask them to leave for now.  While in MRI was totallly out of it.  Going into the GK procedure I felt awake and had bad short dreams that felt so real.  I dreamt all of teeth fell out and woke up upset but realized I did have my teeth.  so bizarre.  Dr. Kondziolka was absolutely the right choice for me.  He credentials speak for himself and his confidence made me feel so much better about my GK choice.  Right now I just have a headache, and small bandages in the pin point area but feeling good.  I took a month off from work but may not need it but I will access as I go since i do have the sick time available to me.  I will keep posting my days before my next MRI in six months.  Thank you all for information and advice that help shaped my decision. 

[Petrone]

Hi DT,

Congrats on making it through GK!  Glad to hear that you were treated by a skilled and capable team. Now that you have braved it through an eventful day, give yourself time to rest physically, as well as emotionally. Wishing you a peaceful and speedy recovery! 

All the best, Petrone

[robinb]

DT-

I was thinking of you yesterday; so glad you are on the other side and had a good experience w/Dr. K. Hopefully, you will continue to do great and have no side effects down the road as the majority of people experience none.

[cindyjarrett]

I know you are relieved to have GK over.  I had GK on October 12, 2012.  Just went back last week for MRI and tumor is stable.  Doctors feel it is dying.  It is not taking the contrast like it did before GK.  I wish you all the best.

[robinb]

Hi Cindy-

Glad to hear of your good news on your 6 mo MRI. I cant believe my 6 mo anniversary is fast approaching at the end of July.

My challenges with facial spasms took a turn for the worse last week. Doc thinks its a combo of my increased travel (8 flights between June 17 and June 28) plus tapering off Neurontin. They increased dosage slightly and asked that I continue with weekly updates. Getting frustrated w/all of this, I must admit. Trying to slow things down again, pull back on air travel and working out. Had no spasms yesterday or today so far....

[dtorres135]

its now ten days and I'm feeling better and better.  still some soreness.  tired mostly.  ringing is still in the ear but i'm used to it.  I know its early and symptons come to surface 3 months from now...but I'm feeling good so far. 

diana

[robinb]

Hi Diana-

Glad you are doing well. Hopefully, no side effects down the road for you!

[robinb]

My spasms have subsided!

After last round of travel, was up to twice a day. When I got home on 6/28 had a spasm bending down and another while biting into a nectarine. Had my weekly update with Dr. Lunsfords office and they increased the Gabapentin back up to 200 mg per day. The next day, had one brushing teeth in the morning, another when going to lie face down on chaise from standing position; the usual triggers.

I am happy to say I haven't had one since! Eight days, spasm free. Went to July 4th fireworks out on a boat and we were close. Had no problems.

My six month anniversary is less than 3 weeks away, time to make the follow up MRI appointment.

Will post after that, or if anything else significant to report.