Sooo confused!

[ppearl214]

GK to CK:

GK is usually done as a single dose, which means all radiation is delivered at one time.  Many people I know have GK done if most or all of their hearing is gone in their AN ear since it is a single application of the radiation and the single dose can affect hearing preservation more than other means of radiation (but not always).

CK (and others such as Novalis, Trilogy, Proton, etc) are usually (but not always) delivered in "fractionated" (ie: over multiple days/doses) in order to help hearing preservation. Many choose these in order to help with hearing preservation. There are recent studies (including one done out of Beth Isreal Boston for CK) noting successful hearing preservation with "fractionated" application of radiation.  By fractionating the delivery of the radiation... the goal is to help the surrounding structures by preventing a higher amt of radiation to be delivered at one time.

Both GK and CK are extremely viable choices for radiation treatment options for AN's. The decision as to which is totally personal.  Please remember that "individual results may vary....."

Hope this helps.
Phyl

[vsfunkhouser]

Thanks to everyone for their imput.  I have an appointment scheduled for a consultation at the Cleveland Clinic on September 2.  I wondered if anyone knows the precentage of patients who have re-growth when choosing the GK procedure.  And if you do have a re-growth can you have the procedure a second time or is your only option surgery.  Thanks!   

[sarahinPA]

Vafunkhouser,  I had gamma knife in 2009 from dr kondziolka at upmc pittsburgh. Dr kondziolka pioneered GK for an patients and has told
Me he has done 11,000 GK procedures in his time. He also told me that in those thousands he has seen regrowth in only 8-9 individuals, myself included. He used the percentage of about 2% of people having regrowth after GK.   With that said, dr kondziolka also told me that the regrowth occurred in older individuals - anywhere from 50's to 70's ( in only 26 so comparituvly
This is older, although we all know 50's isn't old!) in these patients, he did re-do GK and said he has had successful outcomes. Dr K was very shocked with my regrowth, and consulted about my case at a conference before referring me to my current surgeon. At that time, he, myself, and my
Current surgeon decided that because of my age and overall health, surgical removal would be my best long term outcome, therefore that's what I did.


My best advie to you, if you choose GK please don't get caught up on regrowth, yes it is a chance but it is so small that it's best to approach a procedure like this as if it will be the only
One! Stay positive and hood things will come!


Also, I just wanted to add to phyl's comment about hearing preservation and GK. Dr kondziolka originally explained to me that GK was the best option in preserving hearing, and like I mentioned before, my hearing improved post GK. But everyone is different and this was my experience!

[leapyrtwins]

if you choose GK please don't get caught up on regrowth, yes it is a chance but it is so small

Good advice.  I also think that's important to note that no one can guarantee that regrowth won't happen in surgery.

My docs surgically removed 100% of my tumor - to the best of their knowledge - but my odds of regrowth are still 1-2%.  Definitely very small odds, but I just want to point out that regrowth can happen.

With surgery, even one cell left behind has the potential of growing and although docs do their best to removed every cell, medicine isn't an exact science and docs are only human.

Jan

[teripo]

So are we saying GK is better for AN than CK .Or what are the percentages for CK regrowth?

[JAndrews]

Hi there! I just checked your age:) you are young.....I would have the tumor removed if it was me! Tumors are more difficult to remove after they have been radiated. There are alot of people on this site who have had gamma knife...and then ended up with surgery anyways.

[ppearl214]

So are we saying GK is better for AN than CK .Or what are the percentages for CK regrowth?

the same.  Both have approx same total success rates (well above the 90% success range) that both are deemed extremely viable AN treatment choices.  One is not deemed better than the other.  Some choose over comfort (framed vs. not-framed), some choose due to hearing levels at time of treatment, some choose due to amt of days, some choose over the technology (COBALT vs. LINAC).  It truly is a personal choice.

[deboline]

I had surgery for a 2.5cm AN Nov 2004, a small piece was left because of the possibility of facial nerve damage. I had several side effects from the surgery - dry eye, headaches, facial nerve damage, balance issues and a constant metallic taste in my mouth.  I chose a more aggressive option at age 35 so I would not have to deal with the tumor later. Unfortunately, I now have re-growth at 1.6cm and I am scheduled to begin Synergy (fractionated) treatment this week.  I made my choice this time to not have to deal with the more quality of life affecting side effects and also to hopefully preserve my already weakened facial nerve.  I figure if I do have to consider surgery down the road, I would most likely have further nerve damage and possible side effects again, so this is my best chance at preserving the quality of life that it took almost 5 years to get back after surgery. I also have no functioning hearing as my nerve was cut during surgery.
My advice is to consider what is most important to you - what you can and can't live with as an outcome - it can be a tough recovery from surgery and you have to be able to accept a different lifestyle. Continue to talk to doctors and ask opinions - the good and the bad. Percentages really can not be taken at face value - consider if you are one of the small percentages, can you live with that outcome.
Best of luck - most of all, do not move forward until you are comfortable.

[teripo]

Thanks for all the input ...you are truely very supportive in this dark time for all who have this.I went to see yet another.This time Dr. Selesnick in the city.I thought the city treats more like you guys said.He seemed very professional aand when I asked why people choose surgery he said to get rid of the tumor,size,etc.He said I am a good candiate for radiation and rec. me to Dr.Chan @ Memorial Sloan Kettering.I have an appt with him also.I felt like he was explaining what I have and got the gist that I wasnt interested and said radiation is a good option.He also said no to Proton Beam,not specific enough I think.I sent my CD's to Stanford, Boston,and Pa.Dr. said it grow about 2mm year.So I had this about 9 years vs .last weeks surgeon said I had this 20 years??!I guess they dont know enough about this and I will have to take the plunge soon maybe in the next couple of months.

[CHD63]

Just have to interject here that the average growth of ANs is 1 to 2 mm per year ..... some grow much, much slower or not at all ..... some grow way faster ..... some grow slowly and then suddenly fast or vice versa.  Always good to have regular MRIs if in wait and watch and keep careful notice of any change in symptoms.

Clarice