Initial Consult - Questions to ask about Radiation Treatment

[bfoley]

Greetings - I figured since most folks on this part of the site have been through radiation, I would ask those in the know.  So thanks in advance for your sage advise! 

Second consult at Mayo, but first with the radiation team.  They only do the Gamma Knife procedure.
What are the questions you asked or wish you would have known to ask.  I have the "take these questions to your first appointment" from this site - very helpful, but looking for any additional information. 

I currently have a 15mm tumor on right side.  Hearing is mostly gone, constant tinnitus.  Balance is affected, scored 21 out of 30 on balance assessment (20 is risk for falls).  I have a daughter getting married in October, I want to have as much function as I can at that time.  I am worried about how soon swelling can/will happen post Gamma (possibly losing facial movement, more balance).

Thanks!   

[gary.s]

Hi bfoley,

I had Cyber Knife radiation, different from Gamma Knife that it is fractionated. Meaning, I had five small sessions instead of one big one. The end result is essentially the same, shrink the tumor and cause it to become necrotic. I felt really tired for the first month after treatment, so I rested a lot. By the second month, I did some travelling, road trips and airplane flights and all was okay. Still felt tired, although my symptoms were essentially the same as before having radiation. My hearing is totally gone on my AN side, balance issues still occur, and I get dizzy from time to time. The AN side of my face is numb from my tongue and mouth all the way to the edge of my eye and ear. It has not gotten any worse since radiation with the potential swelling of the tumor. My doctor told me after my radiation treatment to go live my life, and that is what I have been doing to the best of my ability. I hope you can do the same after your Gamma Knife treatment. Have a wonderful time at your daughter's wedding in October. Best of luck.

Gary

[bfoley]

Gary -

Thanks for your response!  I really appreciate it.  I do understand everyone's journey is unique, but I am trying to prepare myself for possibilities.  Can you tell me if you had balance issues before treatment?  How about numbness in the face and tongue?  I plan to work hard at regaining balance again, as I love to travel, hike, Zumba and practice yoga (a big challenge as of late). Again thank you for your input! 

[gary.s]

Yes, I had balance issues before treatment and it has remained the same after radiation. My facial numbness and loss of taste on my tongue are also the same as before treatment. Nothing has gotten worse, the symptoms have been stopped from increasing in severity. But the symptoms I had before I still have now. Just keep pushing forward, I also hike, ride horses, my bicycle and love to travel. Don't let this thing stop you, take care of it and continue on. Best of luck and be well.

Gary

[Gtmochi]

Hi bfoley,

Like Gary, I also had CyberKnife, except I had 3 sessions.

I wanted to chime in and say that after CK, I was pretty much back to my routine fairly quickly. After CK at Stanford, we drove home to LA and I spent the next day on my couch. I love to ride horses, so the first thing I did the next day was get back in the saddle. The following Monday (we came back from Stanford on a Wednesday, I believe) I got back to work.  Since then, I haven’t really had to adjust my activities.  I ride 4-5 times a week, go to the gym the days I don't ride, walk my dogs a lot, and work from home (which makes things easier).

Previous to CK, I didn’t have any balance issues…that I was aware of at the time. But in hindsight, I recognize that instances of clumsiness in years previous were actually caused by my AN. In any event, balance  was not really an issue previous to CK in that I wasn't aware something was awry. A couple months after CK, I had one episode in which I got the spins…without the benefit of actually drinking. Other than that, I have been fine in that respect. In my case, my pre-CK symptoms were tinnitus and face feelings I thought were TMJ…but turned out to be my AN.

Early on after CK, those symptoms spiked a few times, but never too badly or for long. Now, a year later, things are pretty much as they were right when I was diagnosed.


I wish the same experience for you, and that you dance up a storm at your daughter’s wedding!


I hope this is helpful!

Jessica

[kestes]

Hi I had GK 6 months ago on a 14 mm AN.  I had slight balance issues, constant tinnitus, decreased hearing and fatigue ALL prior to GK.  I still have them all as well.  NO facial problems for me at this point - no metallic taste, no burning sensations.  My hearing has declined, which is expected, tinnitus was terrible right after GK but is the same now as before GK.  Fatigue is a little worse.  I just have to nap in the afternoons for a little bit and I am fine then on.  I went to UVA Dr Sheehan and they put you to sleep to apply the headframe, took 10 minutes.  Then awake for the rest of the procedure.  5 weeks after GK we flew from South Carolina to Utah and we hiked 25 miles - Bryce Canyon, The Wave and part of Angels Landing to Scouts Lookout.  I used walking poles but did fine.  I run a few miles several days a week, I bike and we still hike.  I have started having short vertigo/balance issues at the 6 month mark and that seems to be very common around that time after GK.  Happy to answer any other questions! 

Actually at the time I was diagnosed, we had plans to hike 5 National Parks last year and we did so...Camped at the Dry Tortugas, Hiked Alum Cave and another hike in the Smokey Mountains, Climbed to Boulder Field of Longs Peak in colorado, which is about 13,500 feet and finished up in Bryce Canyon and Zion.  I had my hiking poles each time and even at high altitudes did great.  All this was done while on watch and wait and then some after GK procedure. 

Also about 2 weeks before symptoms presented themselves, we climbed Half Dome Mountain in Yosemite.  Of course had no idea I had the tumor at that time, but symptoms struck me 2 weeks after - some thing maybe the altitude caused an early onset of symptoms which then led to .

My activity level has not changed much.  I am being careful with the recent vertigo episodes and will NOT be climbing any mountains right now.  Will wait the symptoms out and see how I do. 

Feel free to email me with any questions! 

[bfoley]

Gary, Jessica and Kestes -

Thanks so much for details.  I get that everyone has different experiences, but so far I don't think there is anything that you all have run into that sounds unmanageable.  I work full time, and fortunately I can work from home as I need.  I prefer to be in the office for face to face time with my co-workers, but its nice to have the option. 

Friday gets me back to PT for balance.  I can tell I have improved, but still feel like I have just gotten off the tilt-a whirl every time I walk.  Not falling down, just unsteady and "wonky headed". 

My list to ask the GK team is growing.  I appreciate any other insights you or others have.  June 10 is fast approaching.

[mesafinn]

I suspect you will be able to dance the night away!     I went back to look what I was doing four months post-GK and all was well.   About a month after my GK, I experienced hemispatial spasms for about a month--but then they dissipated.    I'm six years post-GK and still have tinnitus, some minor balance issues that I've learned to overcompensate for, but by and large all is well.

I have a long list of questions that I asked during consultations and/or during each doctor meeting.    When I met Dr. Lunsford in Pittsburgh prior to the procedure, he indulged me for about 30 minutes of questioning but then had his limit and politely said, "You're doing this to live a full and happy life.   Start now" because he could tell my questions were a result of my uncertainty!

I am confident all will be well--but feel free to write offline if you have more questions or want my laundry list of questions!

Patrick

[bfoley]

Mesafinn aka Patrick -
 
I would really appreciate seeing your list. My email is bfoley128@gmail.com.

Cheers!

Bonnie

[PaulW]

Questions to ask about Radiation Treatment
Will I get any super powers?
Will I glow in the dark?
Will I transform into a Mutant Cockroach?
Will my blood turn Green?

[bfoley]

PaulW - With a status of "Hero Member", I'm guessing you DID gain some sort of super power with your CK!    Congrats, and I hope to have a similar outcome with GK.