Proton radiosurgery

[Doug]

I'm new to the group and actually writing due the AN my daughter has.  Long story short. She had a 4cm AN found in May of 05, surgery at Mass. General in July 05- pretty good results, but headaches continued and more recently tinnitius - we had a check-up back in Boston this past week( we live in Buffalo NY ) and the MRI detected that the remaining tumor showed signs of growth.  Now they are proposing Proton radiosurgery.  They said that now that the tumor is smaller, this would be the best approach. Amanda is 22 and, needless to say, we want to do the best for her....but we had heard of the Gamma knife, but this one ( Proton ) is new to us. 

We are looking for feedback on the Proton approach....

Thank you.

[ppearl214]

Hi Doug and welcome!

Phyllis here in Boston and know of what you speak. Please give my best wishes to your daughter and tell her (and your family) that we are here for you!

Proton is done here in Boston at MGH... I think there is one out at Loma Linda in CA as well. Not sure about a 3rd facility but I think one does exist.

I just had Cyberknife done at Beth Israel here in town. I think there is a gentlemen here that just completed his Proton treatments at Loma Linda and if you look through this "Radiiation/Radiosurgery" forum, you should see his posts.  My short term memory is in place so I'm sorry I cannot remember if it's Gary or Paul.

As your daughter is young and the residual is small, radiation is a terrific choice of treatment.  There are many safe options available (via Gamma Knife, Cyberknife, Proton and FSR).  Reading some of the threads here about all of these forms of radiosurgery would be a good start as to advantages/disadvantages of one over another. I truly believe it's a personal choice as to which one is choosen.  For me, I based my decision on accuracy of the treatment (heck, if they are going to beam me, they better hit the thing!), the comfort level of the procedure, as well as the opportunity to have the healthy tissue recupe from the treatments.  All are very viable options in radio-surgery.

Any of us are here for you to help answer any questions... we truly do understand!

Happy holiday weekend to you and your family. My best wishes to your daughter. Please tell her to hang tough and we're here for you all!

Phyllis

[Doug]

Phyllis:

Thanks so much for the feedback.  We continue to search the site and others for information on this type of treatment.  Not too comfortable with "zapping" things in the brain and the resulting after effects.....if you know what we mean.  MGH seems to be a leader in this - Amanda has already gone through 15 hours of surgery and we would like to avoid another round of that.....anyway, we will continue our seach...right now we are schedule to have the Proton procedure done in June.

Thanks again and go Sox!

[ppearl214]

Hi Doug,

Oh, most welcome!

Here are some links that may be of interest that I thought I'd share:

Cyberknife - Beth Israel
http://bidmc.harvard.edu/display.asp?leaf_id=11051

Cyberknife Support website:
http://www.cyberknifesupport.org/forum/

Gamma Knife: Tufts University Boston
http://www.bostongammaknifecenter.org/new.htm

Proton - MGH
http://neurosurgery.mgh.harvard.edu/ProtonBeam/

IRSA website discussion of all forms of radiosurgery:

http://www.irsa.org/acoustic_neuroma.html

I hope some of these links will help with your research.

GO sox!  Heck, if Manny would hit a homerun someday soon, I'd be happy!

Phyllis

[jamie]

Not too comfortable with "zapping" things in the brain and the resulting after effects.....if you know what we mean. 

Hi Doug, I agree with Phyl that all radiosurgery options are viable and all have the same effect on the tumor cells, there doesn't seem to be alot of info on proton but ionizing radiation is ionizing radiation. However accuracy is not the same across the board, and if the whole "zapping" concept makes you uncomfortable you'll probably want a machine with the best accuracy so healthy tissue is spared. The two best machines are the gamma knife and the cyberknife, many of us personally are partial to the cyberknife, it offers the option of fractionating treatments over a few days which in theory (and I believe is being proven) allows healthy tissue to recover between treatments which leads to fewer nerve issues, also it doesn't require a frame to be pinned to the head, just a simple mask to keep the patient still. Treatment by cyberknife was a breeze for me personally, I've had far more uncomfortable trips to the dentist. Good luck with your decision.

[ppearl214]

Hey Jamie... sharing the same thought process as you. 

Doug, please check one thing for me when you continue your info search on Proton at MGH, please. In my research, I found that the Proton treatment was very expensive and not sure how much of your insurance will cover, based on your policy.   Just fyi... you may want to check.

I lucked out that my Blue Cross covered all aspects of my Cyberknife at 100%, but I've heard different things about the Proton.  Not sure about your insurance policy/coverage, but you may want to call the Proton center at MGH, get the "CPT" code for the treatment, then call your insurance carrier, give them the CPT code and diagnosis of AN... they will then tell you.

Hope that helps.

Phyl

[jamie]

I work for a major insurance company, I only know of one CPT code for radiosurgery, it's '61793- Stereotactic radiosurgery (particle beam, gamma ray or linear accelerator), one or more sessions'...perhaps proton and particle beam are the same, or, proton is still considered experimental...

[ppearl214]

Jamie, I got the same CPT code.....but hear that the billing on Proton is higher than other forms of radiation, depending on the policy... not deemed experimental, to my knowledge...... be curious on this one based on his policy how much may be deemed "R&C" and what would occur as out of pocket.... thoughts?

Phyl

[jamie]

It should pay the same, unless it's a new CPT code or the facility is out of network. Otherwise, as far as the insurance company goes, it's the same thing, in claims they have no idea what the difference is between machines, heck neither do most of the medical directors...

edit to add: Also, as you said earlier, if the procedure itself is more expensive, they may be responsible for a higher % if their insurance only pays a certain %...

[Doug]

One more question, if you don't mind.  Headaches...Amanda takes excedrin to control these - they have been an issue from surgery on.  She takes close to 8 excedrin a day....we have tried massage therapy..still going to these sessions etc, but not much improvement - if any.
 Have you heard of anyone trying - acupuncture?  I'm sure it has been tried, but have not seen any information regarding results.  During our visit to MGH this week Amanda mentioned headaches as her number one concern - ( that fell to #2 when they advised that the tumor had shown signs of growth )  Dr. Martuza ( Amanda's Dr. at MGH ) mentioned that some people had tried acupuncture with success....but the conversation turned to  treatment for the tumor and we never really finished that part of the discussion.

Thanks to all for the Proton responses.  We are very appreciative of everyones concern...really!

[jamie]

Well, I know we usually cover acupuncture, so I'm sure it does work. Here's an article you may wanna read....

http://health.dailynewscentral.com/content/view/1388/63

[shoegirl]

Hi Doug,

I have been following this thread throughout the day, I have been thinking about trying acupunture myself for headaches and general wellness.  I know acouple of people who swear by it - so I may try their dr.  If your daughter tries it - I would be interested in what she thinks.

I am one of the radiosurgery patients that favors CK.  But like Jamie and Phyl I think that they all are good options.  I went with CK because of the accuracy (at my 3 month checkup my dr. reviewed my MRI and said that none of the surrounding tissue got radiated - Yeah!), like the mask approach versus head frame, liked that it is fractionated in smaller doses to give healthy tissue time to heal, and I like that it can make adjustments for movement if need be.   I also like the ways CK targets the tumor, it can conform to the shape of the tumor - which helps with avoiding radiating healthy tissue. With other treatments the tumor is targeted inside of a circle or a few circles to encompass the entire tumor therefore additional healthy tissue may receive radiation.  I hope this makes sense.  This worked well for me as my tumor is shaped like an ice cream cone. The treatment was really easy.   Felt comfortable throughout the entire process.  Hope this helps!

Good luck!   By the way, just curious, how old is your daughter?

Best Wishes, Suzanne

[Battyp]

Doug I've used acupunture in the past due to sever migraines and it did provide relief.  I had miserable headches prior to surgery and used zomig and excedrin migraine for relief.  I know others on here have used zomig for migraine relief as well as some other meds.  Before my surgery I noticed my headaches were more a pressure inside my head and they put me on decadron which relieved any headache pain I had. 

Here's praying things work out for your daughter!

[Doug]

First of all thanks to all for your comments and suggestions.  This entire process is new to us.... all our children have been blessed with good health....we have 4 with the oldest being our son followed by three daughters....our youngest daughter( 22 years old ) is the AN "champion". 

For the headaches we are searching for something - that may not exist - to give this kid some pain free days...not sure how the Proton will impact headaches - good or bad.  Anyway, this is why I ask about acupuncture - we are trying to find a reputable Dr. to give this a try in Buffalo.  Also, we are looking into  pain specialists for a more overall plan of attack on headaches.

Thanks again for all the input.

Doug
ps...I really need a spell-check on this site!

[Battyp]

Doug I know an excellent pain management doctor in Sebastian Fl.  You can vacation at disney world and get treatment!  Actually he might know someone in your area to help.  I know he's done extensive work with An patients and migraines.  His PA is my brothers room mate and they helped me considerably before surgery with mirgraines.  We were just talking about all his experience with an's over easter dinner  lol  His name is Harold Cordner.

Considering alternative meds for a hormone imbalance...there is a great accuptunturist chinese vodoo (as my brother refers to him) doctor in this area...can't say the other doctors are all that great LOL