ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: gtseg on February 13, 2015, 06:09:34 pm

Title: Proton therapy and facial problems
Post by: gtseg on February 13, 2015, 06:09:34 pm

Has anyone heard of post proton treatment facial problems.  Spoke with a neurosurgeon and he warned us of the post proton horrors.  Is this hype or reality?

Title: Re: Proton therapy and facial problems
Post by: PaulW on February 15, 2015, 11:53:53 pm

Here is a link demonstrating the results of Proton Therapy
http://www.ncbi.nlm.nih.gov/pubmed/19054586

Facial Nerve Preservation of 90.5%   or failure rate of 9.5%

http://www.ncbi.nlm.nih.gov/pubmed/12943574
Facial Nerve Preservation 91.1%

Hearing and trigeminal nerve preservation rates well below Gamma Knife or Linac

Here is a link to Gamma Knife results
http://www.ncbi.nlm.nih.gov/pubmed/25077305
Less than 1% facial neuropathy...

2991 People treated for AN's at one Gamma Knife Centre......
http://www.ncbi.nlm.nih.gov/pubmed/22682708
Transient Facial Palsy 0.5%

Cyberknife
383 Patients No Facial Weakness
http://www.ncbi.nlm.nih.gov/pubmed/21558974

Title: Re: Proton therapy and facial problems
Post by: keithmac on February 16, 2015, 05:49:03 pm

I was told that the proton beam can not be targeted so accurately as GK and CK, perhaps better suited to other forms of tumors.

Title: Re: Proton therapy and facial problems
Post by: Susan59 on February 17, 2015, 12:02:24 pm

Yes, I was also told that Gamma Knife or Cyberknife was more accurate than Proton Beam for an AN.  After lots of research, I decided on Gamma Knife at UPMC.  Good luck in making your treatment choice!

Title: Re: Proton therapy and facial problems
Post by: Ahollo on February 18, 2015, 09:59:55 pm

OK, so after lots of stress thinking about my options, I'm going to call Tricare to make sure there is not a loop hole to be treated elsewhere. Wish me luck!

Title: Re: Proton therapy and facial problems
Post by: NYLady on February 19, 2015, 08:02:34 am

Ahollo,

Without a doubt you are wished good luck!  I think just about everyone on this forum would encourage you to ask all the questions you need to and explore every option in connection with your treatment.  Take your time until you feel comfortable with your choice.  Certainly to rush into treatment because of one doctor retiring is not a good enough reason to move forward if you do not feel you are ready to make your decision.  There are many, many wonderful surgeons out there, all over the country.  Being in the military might limit you to some degree.  Not sure about that, but if they allow you to "go out of network" you have a wide open field to chose from.  Just dont rush into anything....follow your gut.

Best to you,
NYL

Title: Re: Proton therapy and facial problems
Post by: KeepSmiling on April 28, 2015, 06:41:14 pm

-I'm guessing that there could be other studies about Proton Therapy. I wish I had more time and could do a little more research. I don't have a pressing reason to try to research it further simply because the results for my husband have been fine. 
Here is our story:
-My husband had no facial problems whatsoever after or before  his Proton Therapy. He finished his proton treatments at the end of August in 2013 and now it is 2015.
-He continues to have minor hives, (treats it with a half of an antihistamine pill -Allegra). He gets these hives  usually  when Spring hits - maybe twice or three times a week.  The Spring Season hits us early in the year where we live. He sometimes gets these minor hives when there is a sudden change of temperature (ex:hot tub)
-He occasionally gets tinnitus.
-His balance seems to be superior. He rides bikes and climbs ladders.
Hope our anecdote is helpful. Best wishes to all!