ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: BusyBonnie on October 19, 2006, 02:21:10 pm
I'm lucky to have so many options open for me but it's making it so hard to decide. The doctor I'm seeing now is Dr. Harris at UCSD. They are soooo nice there! They only offer Gamma Knife and surgery. I've decided against surgery due to recovery and my neuroma is only 11mm. There is a Cyberknife Center here where I live called San Diego Cyberknife but I may have to jump through some hoops to get a referrel for cyberknife. Stanford just called me and the Doctor on the phone was wonderful! But it will cost me two plane tickets, time off work, hotel, and I have two kids so I don't know what to choose. My main concern is preserving what I have since my tumor is small. I just keep thinking cyberknife may do that better than Gamma Knife. I'm so confused! Any advice out there? Thanks,
We have some friends in my home town. Their son had a 1.2CM two years ago and had in Surgically removed by a Dr. Thedinger in Kansas City. This is the doctor that did my first surgery back in 1988. Anyway- I was led to believe by this Surgeon that some AN's that fall under 1.2CM-the hearing can be saved by Surgery. In this case his hearing was saved by Surgery. Being this small-it might be the best option. Now I do not expect you to go to KC-I am just giving an actual case where hearing was retained and preserved. In one of my posts-I related how decisions that can affect the rest of your life should NOT be based on money or convenience. I traveled all the way across the US to get my radiation no matter the cost. Take your future into account and then decide what is best for you-Good Luck.
Thank you Dealy! Any info helps. My hearing isn't very good in the AN ear but I just don't want to lose what I still have left. I just recently went to the air show and I put a plug in my AN ear so the tinnitus wouldn't be worse after and I couldn't stand not being able to hear at all out of that ear even if the speech recognition isn't very good. It helps my good ear in some weird way. I'm just worried about balance ,headaches, facial palsy and such with surgery even if temporary. All I have been hearing sounds like horror stories to me. I have two little kids and no one to help me with them. My Husband can not take off from work. He's already missing enough dealing with his newly diagnosed Multiple Sclerosis and going to doctors, specialists and such. Thanks for the info and I will keep it in mind before making a final decision.
Hi Lana and welcome
Now 6 mos post CK..... I'm doing great. Occassional side affects that have really minimized over the past months (ie: facial numbess, hearing, etc). I know it's overwhelming to try to figure out what is best for you, but either way, GK and CK are both very viable options in the treatment of AN's. GK has a fantastic track (historical) record, having been around for over 35 years. CK is, yes, newer and I think of it as the grandbaby to GK. You know that GK is a single dose vs. CK which is fractionated. GK uses a metal head frame (temporary discomfort when you think of the long term affects of the radiation)... CK is frameless and uses a mesh mask (if you click below on my frappr link, you will see me in CK treatment, as well as what the mask looks like). Recent reports show that CK is slightly more "accurate" than GK, but to compare them both, they are pretty fairly even. There are many here that have had CK... many that have had GK. If you get the chance, I would probably suggest emailing some of the folks to start communications to get a feel for their treatments and outcomes.
I can only wish you the best in this very overwhelming time... my inbox is also open to you if you'd like. Just know that we are all in the same family and are going to help you get through this.
I want you to know that having AN is not the end of the world although I thought it was in the first few days before I did my research. Yes, there are some inconveniences and some pains but they are all manageable. I know there are times that we all feel very stressed out and despaired. But please take the positive approach for your family. Everything should work out fine as long as you do our research and make the right decision.
As far as GK and CK are concerned, they have the same biological effect in destroying the DNA of the tumor by radiation. There are differences however as Phyl and others pointed out. You will need to make the right decision for yourself weighing all your preferences and options.
In my case, I am one of those people who dread pain. So, between GK and CK, CK became my natural choice for me and my local neurosurgeon confirmed my decision on CK. Since I live in San Diego, I visited the San Diego Cyberknife Center in July, 3 weeks after they opened and 1 week after I found out about my AN. The CK forum doctors also said recommended them since it is in my hometown. However I decided to go with CK at Stanford because in July I wanted a facility with more experience and I feel very comfortable with the team there. I had my treatment at Stanford in August and am very pleased with the results so far.
You may want to post questions to the doctors at the CK forum. They are very good in offering advice and very responsive. They helped me with my decision as well as my doctors and many others on the board. So, please please ask all your questions to your satisfaction. You need to make informed decision!
Please do not hesitate to contact me in the forum or even send me personal mail if you prefer.
If I had to do it it again, I would have fractionated GK or just plain GK. I think it's more accurate in the right hands when all is said and done, despite the hype and claims that bounce around.
Well, I figured I'd chime in from the GK side.Ã‚Â I had GK in November of 2003 for a 1.8 cm tumor (left).Ã‚Â It swelled slightly after the treatment (to 2.1 cm over a few months), and is currently hanging out there.
The tumor does show slight darkening in the center, but I wish that the tumor had shrank...instead of just hanging out.Ã‚Â But I guess as long as it behaves it can stay.Ã‚Â :)Ã‚Â Ã‚Â The headframe wasn't as bad as it looks/sounds for the GK.Ã‚Â I didn't feel a thing.Ã‚Â I went on a Friday, had the treatment.Ã‚Â Stayed overnight and then went home.Ã‚Â I went back to work on Monday.
My hearing is about the same in my AN ear (hearing / voice recognition).Ã‚Â It really is a personal choice on which type that you want.
Go to the Cyberknife site and ask Dr. Medbery. He does both CK and GK. I think he can help answer your questions. He will even answer on his personal email.
He will also tell you about accuracy. I had the difficult decision to make between CK and GK. I chose CK and have never looked back.
My symptoms post surgery (10 mo. ago) contunue to improve. Facial numbness is gone, tinnitus is greatly reduced. Balance has been up and down. My up periods are getting longer and longer. So far slight shrinking of Ivan the Terrible. Dark line cutting through the tumor. Lost the bobble headed feeling I had before treatment and for about 8 mos after.Couldn't hear out of the AN ear before treatment and can't now. I am back to dancing and riding my horses. Most days I do not even think about Ivan. No one could have possibly stressed more than I did before treatment.
There is nothing that will make you as you were before the AN. I would say that I am at about 90% most days. I have never missed a day of work due to post treatment problems. No facial problems, dry eye or anything like that.
Thanks for all the wonderful advice everyone! I have an appointment with my primary physician on wednesday to ask for a referrel to San Diego Cyberknife. We'll see if I get it! I'm sure either one will be good but CK just sounds like what I want if I can get the referrel. I will check out everything you guys have said and thanks again!
Hi, I have been recently been diagnosed with a 4mmX7mm acoustic neuroma on 09/21/2006. I had my consultation with Dr. William McFeely (at North Alabama ENT in Huntsville, Alabama) on 10/23/2006. Dr. McFeely informed me of my options, and told me that I was at the present time a good candidate for the Middle Fossa, and the Trans-Lab was too risky for my situation.He also informed me that I was candidate for radiation.I have done a good deal of research on my options. The bad news I received from Dr. McFeely is that I would have to travel from north Alabama to Los Angeles at House Ear Clinic for the Middle Fossa.If I go with radiosurgery I have been recommended to go to Gainesville, Florida, which is another financial problem. Dr. McFeely talked more positively about the open surgery approach. I have been doing alot of research on "gammaknife" and "cyberknife". Dr. McFeely told me to talk to someone from both areas (Middle Fossa / Radiosurgery) to find out as much as I could (Pros/Cons) about both treatments. Could you explain to me about the Radiosurgery?
If I go with Radiosurgery, Will it be more difficult to have the tumor removed later if radiation fails?
Can the gammaknife or cyberknife be used again if the first time fails?
What are the chances of the tumor turning malignant after being radiated?
How often does the tumor begin to regrow after radiation?
I know that alot of people "just want the thing out of their head" but If I can live a normal life after radiation, I don't think I will let anyone cut into my head,"the brain can be very unforgiving".
Is there a closer facility that can treat me in Alabama, Tennessee, or Georgia?
Are there any good doctors within the same region that can perform the middle fossa approach?
Thanks Bruce. I have been leaning toward the radiosurgery from the research I have done, but when I had my consultation, the Doctor sort of scared me with the so called proven facts against radiation. I have also read an article stating that there has been the equal of microsurgerys that have later turned cancerous also. So it appears that the two forms of surgery are the same ending results, just nonintrucive on one.
I think we all are hoping for the best of outcomes when dealing with our AN.
I am always asking myself if I am doing the right thing? or if there is something better that someone has gone through. Only if I could read into the future to see how well my decision (whatever that will be) was made at this point and time. No matter what the outcome our decision will be final and we can look back and say "I really made the best decision for myself". I think I am in the same boat with a 1.2 CM AN, I really wanted the easy way out with radation treatment, but now after talking to a lot of nice people here on this Blog I am going with the surgery seeing I am sill younger. I hope our outcome is the best.
My friend Bridget (KUSI news anchor) just did a feature on San Diego Cyberknife yesterday after I told her to get the words out.Ã‚Â Here's the link:
BTW, did you see my post on "West Coast AN Forum Get-Together!!"
http://anausa.org/forum/index.php?PHPSESSID=c4a03f64f16a8b32aa5df7f7b667716a&topic=2301.0?Ã‚Â Since you are right here in San Diego, there should be no excuse ;)!!!Ã‚Â And others who are on the west coast, we'd love to have you!Ã‚Â I promise fun, ocean and great margarita!!!!
Hi Sam and welcome,
In addition to Bruce's notation of Emory (can't get any better than Emory for Atlanta area), I have also confirmed that Cyberknife is now offered at Kennestone Hospital. So, very very viable treatment options in Atlanta.
Bruce, next trip to Atlanta, I am so going to meet you for lunch! Mom and all are up in Roswell/Alpharetta. Will have Cheeky Bloke with me on my next trip there! :)
I'm not trying to hijack Lana's thread. but I will try to answer your questions here. I live about midway between the Alabama border and Altanta in Villa Rica, GA. I'm about 30 miles from Emory Hospital in Atlanta, and that is where I plan to be treated when and if the day comes. Currently, I am in wait-and-watch mode, but at the beginning of the year I plan on consulting with Dr. Mattox of Emory. Dr. Mattox does both microsurgery and radiotherapy (LINAC) and has a lot of experience and has an excellent track record. Several of our AN club members have gone to Dr. Mattox and have been quite pleased with their results. Drop Labott a line, and he can tell you more. He had LINAC and was very happy with the outcome. He can also fill you in on the teams that Mattox works with. One of the nice things about Dr. Mottox is since he does both forms of surgery, so he will steer you to the one that he feel is most appropriate for your specific situation, not one biased upon a particular specialty.
As far as repeat applications of GK or CK go, yes, absolutely you can have it done again if needed. We have a member who just posted yesterday who has had two treatments. The first zap had stopped half the AN a few years ago, and hopefully this latest zap got the rest of that wounder sucker (the AN, not the patientÃ‚Â ;D). I have heard that some ENTs will argue that radiation can cause the AN to matasticize over time and become cancerous. Out of the thousands of treatments over many, many years, there are only eight documented cases of that happening. Those are pretty good numbers for sticking with radiotherapy if your situation qualifies you for that. In terms of the composition of your AN changing, that is another argument that we hear certain ENTs expressing. The fact is, they just don't know.Ã‚Â Some ANs are sticky, and some are not. Some entangle the surrounding nerves, and others push them aside. I know I sound cynical here, but it's not the radiotherapy docs making those claims. GK, CK, and LINAC have a proven track record, so you can feel confident giving with that non-invasive form of treatment. The important thing is to follow your gut feeling and not feel shoehorned into a choice you don't really want. Anyway, I hope this helps. Best of luck on your AN journey, and welcome to our exclusive club..
I would love to meet you and Cheeky Bloke. Hey, that little Aussie bakery/cafÃƒÂ© is in Marietta which is pretty close to where your mom lives, so maybe we could meet there if you like. I bet CB would love it...Ã‚Â Ã‚Â :)
I just applied to Emory's doctoral program in Educational Studies. It's a looooong shot if I get selected since they only accept six students per year. I guess if I had all of my brain, I wouldn't have applied...lolÃ‚Â Lisa and I sure do love the Atlanta area though. So far it's been great...
Hello Future Dr. Bruce,
You are on! I'll be there with the Cheeky Bloke in tow! Nothing like bakeries in "May-ret-ta" :) (Use to work at Windy Hill Road... Dave and Busters was our after work thang!)