LOOKING FOR LONG TERM RADIATION PATIENTS

[ppearl214]

Gary... sounds like you are doing FAB and keeping those wellness wishes coming your way!  You've come a longgggggggggg way, bebe!
Phyl

Thanks Phyl for the kind thoughts and wishes...all of us I'm sure get stressed during these tumor "checks"

Tumor rot??  LOL…   at least my heads airtight (well I think it is)   

I just wanted to drop a quick update on my MRI results.  I normally don’t post the actual tumor measurements because I found that they seem to “hunt” from Radiologist to Radiologist…depending on who is reading the report.  The MRI reading showed that the tumor has not significantly changed in appearance to the prior examination.

No significant change in audiogram. Speech Reception/Aware Threshold:  Right Air 10dB, Left Air 65 dB.  Word Recognition: Right 100% at 50dB, Left 80% at 80 dB.

I’m still waiting for University of Virginia’s take as they are still monitoring me as well

[RamAir]

Patti...I'm one of those "10 year post-op people".


No issues here...check out my latest updates.

http://anausa.org/forum/index.php?topic=186.0

[Vivian B.]

 RamAir,

Your story is purely inspirational. Thank you for sharing. It came a good time as I was reading an article this week about gammanknife and risk factors years from now and was a little bit freaked out, but after reading your story, you make a lot of sense in choosing radiation treatment. Thanks again.

Vivian

[Patti UT]

Patti...I'm one of those "10 year post-op people".


No issues here...check out my latest updates.

http://anausa.org/forum/index.php?topic=186.0

Thanks RamAir,
  Great story, I am so happy to read it.  I am still in the deciding mode.  having terrible balance issues I'm not sure the radiation will hlep, might hinder.  The fist surgery left behind some of the vestibular that is causing havik, surgical removal I'm told can get rid of it.  My personal jury is still out. especially after reading your story.

patti ut

[Mark]

I heard my name mentioned and thought I'd drop in 

I'm scheduled for my 8 year MRI / audiogram in November with Dr. Chang. No changes from the last update which Steve posted earlier in the thread

Mark

[diverjeff]

Hey Patti UT,

Just this past Thursday my wife and I met with the nerolotologist and he said the AN after LINAC STR would be scar tissue. I asked because of fear that if the tumor returned or the radiation didn't work could the tumor be excised. He said after all of the people he has treated they had only one which returned and were going to operate soon.

Safety & blue skies,

DJ

[sher]

Hi Patti,
Just thought I would chime in and see how you are doing. I enjoyed our conversation a few weeks ago. Have you gone for a consult with Dr. Reilly at Cyberknife? Please let me know how you are doing. I have been thinking alot about you lately.
Sher

[Patti UT]

HI SHer,
  met with SLC CK,   Huntsman who does GK & Novalis, my orig surgeon and phone consult with HEI.  took another bad fall, 2 more bad injuries.  Suregry is my best bet for Improved balance, so as much as I wanted to convince myself to go radiation,   I need to go after the hope of not falling all the time. I'd like to get another 30+ years out of this body, I need to quit breaking it.  )

Can you do lunch next week?  Lets get Andrea and Jeff and get together.

Patti ut

[sher]

Patti,
I am so sorry to hear of your balance problems. Of course you would want to do whatever it takes to keep from falling. I still have that fear at times.
Would love to have lunch next week, just let me know and I will see if I can get off work.
Hang in,
Sherry

[Susie Q]

Hi,
 I had FSR at Johns Hopkins 9 years ago. I just had my 2- year MRI checkup. There has been no change in all this time. I have 90% deafness and a little eye blinking and smiling problems, but not too bad. The tumor is 2.5 cm and is just dead, I guess. It isn't rotten or anything. Nothing much has changed. I still drool sometimes and have trouble with eating and drinking, but as long as I stay away from soup and use a straw to drink, it isn't too bad. I feel lucky to be alive and have since become a nurse. It definately gives one character. Oh, and people think I'm pretty. Go figure. So, I'm glad I didn't choose to have the 18 hour surgery with all the scary risks. I would, and have, encouraged others to go this route. I find the weather, stress, and being tired affect the stiffnes in my face. My neurologist gave me lose dose valium to relax the muscles. We'll see how that goes. I'm a big believer in accupuncture but it's $90 a session here so I guess I can't do that. Feel free to write me. I'd love it!

[Joef]

I stay away from soup and use a straw to drink

I remember the first time I ordered a beer at a bar shortly after my surgery .... I quickly realized I could not drink it without getting half of it on my shirt.... so I asked the barkeep for a straw.... I bet I was his first person to drink a Guinness with a straw 

[Susie Q]

joef,
That's funny about the Guiness beer. No, I don't think you're the first. I have had Dos Equis with a straw- the waiter knows to give me one. Also, wine-merlot stains really badly so I have learned through many ruined clothes. I think we are doing well to have a sense of humor about this.