ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Nick M on March 01, 2007, 06:45:25 pm
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AN Friends:
I just disocvered this message board and my wife and I are reading all the posts with great interest.
I am 53 and just got the news that I have a 1.8 cm AN. I am scheduled to see Dr. Getch at Northwestern Hospital in Chicago. From our reading, we think the GK procedure looks less frightening than surgery, but we are still gathering information.
Thanks for sharing information. Has anybody on the boards had surgery or GK at Northwestern?
Looking forward to getting to know you.
Nick M
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Welcome Nick to our little club that no one wants to join! I can't answer your question, but I just wanted to say that we are glad you found us and that there are a lot of people on here who are so knowledgable and willing to share their information and experiences with you.
The best of luck in your decision making and your eventual treatment and recovery.
Sue in Vancouver USA
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Hi there Nick...
I have a 2 cm AN having been on 'wait and watch' since diagnosis 5 years ago.
I am now 63 and will opt for GK if and when I have to make the ultimate treatment choice as at my age I consider invasive surgery to be an unnecessary additional risk.
Whatever your ultimate treatment choice, ensure that it is YOUR personal decision based upon thorough research and that it is one that you are totally happy with.
Very best wishes.
Derek
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Welcome to our exclusive club Nick M. Before choosing a treratment mode-please look at the pros and cons of each treatment form. In radiosurgery GK-CK-FSR are all good options but each as a plus and a minus. Here is the Key element to me. The treatment protocol is the topmost important criteria. Check out the treatment success and failure rate where you choose treatment. Many places will try to sell you a golden egg. If they can not support with data and facts I would look someplace else. WHy you ask? Well once you choose mode of treatment that cannot be reversed. At 1.8 you still have plenty of time unless it speeds up over nite-hardly unlikely. Best Wishes and keep us updated on choices etc. I chose FSR last summer at John Hopkins. I am scheduled for a 9 month MRI on the 19th of this month. How much hearing-if any do you have left.
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Sue, Derek, and Dealy:
Thanks so much for your responses. It is nice to have company in this.
Derek: I really like the fact that you are on "watch and wait." That may not be my best option since I have bad headaches and some dizziness.
Dealy: I do have hearing loss on the right side (tumor side) but we haven't seen specialists yet so I don't know the percent.
Waiting to get word on our appointment time. Will keep you posted and looking forward to being of assistance to you as well.
Nick M
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Hi Nick and welcome!
I am not personally familiar with GK out at Northwestern, but I am familiar with Radiosurgery..... and am one of many that have done well with it. Please take time to read the "Radiosurgery" and "Physician" forums here, as well as the "Archives" for info... if you are looking for specifics, you can also do a "Search" for info as well.
Hang in there... we're here for you and your wife.... and again... welcome.
Phyl
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Hi again Nick...
Having only recently been diagnosed you will undoubtedly be subject to an understandable element of stress which may have some relevance to your present headaches. At the time of diagnosis I too suffered headaches and an element of dizziness.
However once I had become accustomed to the news of the dreadful diagnosis of an AN, that shock soon dissipated when I became fully aware that the AN condition was benign and could be successfully treated. I then undertook loads of research and as my initial fears receded my headaches subsided and my dizziness disappeared. Since then I have continued enjoying life to the full and regularly ride my motorcycle and walk at least 5 miles every day...rain or shine!
I am due my annual MRI scan next month and hopefully if there has been no enlargement I will continue in 'wait and watch' mode for another year.
Hang on in there Nick and do NOT be rushed into any treatment option that you are not comfortable with. If necessary, get other professional opinions before making YOUR ultimate decision.
Best Regards
Derek
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Hi Nick,
My wife had a 1.9cm AN successfully removed at the House Ear Clinic in LA. This board is a great source of support and information. I echo what others have said. Take your time and do lots of research. House does a lot of research, so you might want to consult their site. Medline is another good place to go. We looked very closely at radiosurgery before making our decision. Radiosurgery and microsurgery are both reasonable options, but you want to make sure you are in the very best hands. So, ask lots of questions about outcomes and experience. If you opt for microsurgery, you want someone who has done hundreds of procedures and has hard data on outcomes.
Hang in there,
Fred
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AN Friends,
I just found out I have an appt. Mar 12. I really appreciate all the input everyone gives on this page. I know more about what to expect and some intelligent questions to ask from the reading I have done from your contributions.
Nick
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Dear Nick, I am in Chicago myself with an AN. Northwestern is the one place I have not investigated. If you see them ask how many ANs they have treated with the GK at their facility. I have checked West Virginia and Pittsburg and they have done thousands of the Gk treatments actually I checked every major facility in the US.
As far as I can tell if you have a large AN it is probably better to have it removed surgically and with possible GK followup.
If you have it removed surgically then you need to do more homework to find a great surgeon. I would agree that the House clinic in La appears to be excellent. There is also Dr Leonetti at Loyola in Chicago who has removed a thousand or so ANs. As for myself I have not decided yet what to do..I have time Woops I almost forgot Dr Wiet at the Ear Institute of Chicago who is also excellent. If you want more names please contact me
Dan
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HI Nick hope your appts go well. Don't let them tell you an's don't cause headaches as they can! Once I decided on my treatment doctor he started me on decadron which greatly diminished the head pain I was experiencing. Let us know how things go!
Michelle
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Hi Nick,
I'm from Chicago. I have 2 cm r AN. i pretty quickly decided on CK treatment in Stnaford (mu insurance coveredit, I could travel, they had huge experience in this trechnololgy). I have talked to Dr, Chandler in NMH but was not very impressed by his approach to my issues (ie. not discussing other options, kind of patronizing, and making decision for me - I must admitt I was still in shock and probably oversensitive). I also consulted with Dr. Leonetti in Loyola and was very impressed by his explanation dedication and time he spent explaining and showing to me my MRI, models of the brain etc. If I was to have surgery I would go with Leonetti. But then I discovered CK and after as much reasearch as I could do I decided on this procedure.
There is a CK center in Arlington Heights (and one more in IL) and one of the posters here had his AN done there very recently. His name on CK site is dowdog (www.cyberknifesupport.org) if you want to investigate his report and discussion with the MDs on that site. He also posts here but I cannot recall his name here.
I am not trying to tell you what to do it is a very personal decision based on your needs, your family needs, accessibility to cetain hospitals and doctors, insurance. How do you fell about keeping the bugger in your head and hope for good outcomes for a period of time until it shows signs of necrosis versus have it removed but deal with possible post-op consequences. As you can see on this site surgery doesn't guarrantee that the tumor will not regrow etc.
It is not an easy decision and you have to do your work to figure out the "right" treatment. And all of them have their pluses and minuses. Once you decided on tx option you will feel better about the whole thing and we will be here to add any info we have to help you thru it.
Flier58
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I had my CK in Nov.2006. Doing well with occasional bumps and for time beeing very happy with my decision.
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Hi Nick and welcome to the club. If you read some of my other post you will see I am not an ANer...but everyone is stuck with me anyway....at first AN was a possiblity which is how I became a little member of this group. I cannot stress from what I have learned that Both GK and CK are definate options and the best resource you could have at hand is the cyberknife support group.org...both Dr. Medbery and Dr. Spunberg are knowleable and patient as can be with good sense of humors.
There are lots of various facts concerning the differences ever so slight that they are concerning CK verses GK,,,,and for hearing preservation it is generally better to perform fractionated treatment rather than straight GK...However, depending upon your type, size, exact location etc. GK may work perfectly well..'
Both Doctors on the site are educated in both types of proceedures and you will find a wealth of info from it.
I would choose surgery as last option of hearing preservation....lots of info on the web is outdated etc. so you need to really research to discern the newest info...
There are argumenst from every site, doctor etc that all differ in opinions which can make it very fustrating, each doctor hospital etc has invested huge money in to thier approach for different reasons..some economic, some systems are upgradeable, training needed, insurance expenses etc. So with that being said..research some more, remember you have time..these are slooooowww growing, so you have the time to make a really informed opinion as to which you would like to have performed for you.
Watch and wait is certainly an option, but from what I have seen, most people do eventually have to have something done anyway....it is up to you, how long you can live with it.
Good luck and keep us all informed.
Ceeceek
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I'm a "newbie" myself, having just received my diagnosis this last December. Tenatively, I am scheduled for CK at Stanford the last week in March. Of great help to me is this forum and http://www.anarchive.org. Download/Read the list of questions to ask a doctor, whether open surgery or radiosurgery. There ARE differences in each of the radio treatments from the type of radiation to the dosage of radiation to the number of sessions. Bottom line, the stronger the radiation, the greater the likelihood of stopping the tumor and the greater the chances of other damage to the many sensitive nerves or to the brain. As of yet, there are no definiitive studies that "prove" the ideal formula of intensity and number of doses. You will ultimately have to decide what you will be confortable with.
My first consultation with the neurosurgeon left me with the only alternative of surgery. But, that's when I found this group/forum. All of a sudden I knew the questions to asks and concerns to have. I discovered that surgery was probably NOT the best solution for me for my particular life goals and occupational aspirations. It may be right for others; it may not be right for me; you will find what you feel most comfortable with.
For me it looks like CyberKnife at Stanford under the care of Adler and Chang.
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... Bottom line, the stronger the radiation, the greater the likelihood of stopping the tumor and the greater the chances of other damage to the many sensitive nerves or to the brain. As of yet, there are no definiitive studies that "prove" the ideal formula of intensity and number of doses.
Hi musicman,
So thrilled that you are going to Stanford... you are in fabulous hands there as many here will attest. Great choice of location for treatment.
I have to ask about the comment you made that I have "bold/red" above..... As one that had 30Gy of CK over 5 days, I only know of a few that have had this amt of Gy for AN radiosurgery. Many I know have had 18-21Gy and their AN's have also been "nuked"/died.....so, can you please elaborate on your thoughts regarding this comment? I totally agree about formula intesity and doses, but as for "stronger the radiation, the greater likelihood of stopping the tumor". In my case, having have received 30Gy dose, I also (for me) have found that I have had no greater chance of damage to sensitive nerves or brain. My hearing remains 100% of what it was at the time of treatment (now 11 mos ago) and I'm doing fine.
Was this all based on info from the ANArchives or from conversations with staff at Stanford or ?
Thanks for helping me to clarify so I understand, unless I totally misunderstood what was written. If it was the latter, then me bad.
Phyl
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Hi Nick,
If you are still doing research, the ANA Chicago group is going to meet at the Downers Grove Library on Sunday, April 22, 2007 you are more than welcome to come. We usually have a guest speaker and we also have people that are pre and post op., watch and wait and CK and Gamma knife. If you would like more information, please give me a personal email. Ann
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My comment was based on explanations by Dr. Chang about CyberKnife vs. Gamma Knife. He mentioned that the radiation source was different and then he explained about European style of treatments which may be up to 30 sessions of very low dosage. His comparison was to "success" rates. The lower (European) dosages had about an 8% reoccurence rate but almost know "collateral" damage to nerves." There slightly higher dosages of radiation over three days has only about a 2% recurrence rate, but there goal is 75% of their patients maintain the resources: hearing balance, etc. A few lose a little hearing, even fewer regain some hearing.
To answer your question directly, the comments I made our my synopsis, summary of what Dr. Change told me while in my consultation.
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thanks musicman.. now, to me, that makes more sense and I appreciate the elaboration...... Although I was not a fly on the wall during your discussions, would it be fair to say that he was referencing FSR/Novalis for the European style (Tony, Derek or any of the Europe gang, if you care to chime in, please do! :) Thanks!) or something else? As many know, the Novalis FSR doesn't bring as good an accuracy (as noted publically on the Novalis website) as the GK or CK treatments, so it is interesting in what Chang shared with you.
Thanks again for the elaboration... truly appreciated.
Phyl
My comment was based on explanations by Dr. Chang about CyberKnife vs. Gamma Knife. He mentioned that the radiation source was different and then he explained about European style of treatments which may be up to 30 sessions of very low dosage. His comparison was to "success" rates. The lower (European) dosages had about an 8% reoccurence rate but almost know "collateral" damage to nerves." There slightly higher dosages of radiation over three days has only about a 2% recurrence rate, but there goal is 75% of their patients maintain the resources: hearing balance, etc. A few lose a little hearing, even fewer regain some hearing.
To answer your question directly, the comments I made our my synopsis, summary of what Dr. Change told me while in my consultation.
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thanks musicman.. now, to me, that makes more sense and I appreciate the elaboration...... Although I was not a fly on the wall during your discussions, would it be fair to say that he was referencing FSR/Novalis for the European style (Tony, Derek or any of the Europe gang, if you care to chime in, please do! :) Thanks!) or something else? As many know, the Novalis FSR doesn't bring as good an accuracy (as noted publically on the Novalis website) as the GK or CK treatments, so it is interesting in what Chang shared with you.
Thanks again for the elaboration... truly appreciated.
Phyl
My comment was based on explanations by Dr. Chang about CyberKnife vs. Gamma Knife. He mentioned that the radiation source was different and then he explained about European style of treatments which may be up to 30 sessions of very low dosage. His comparison was to "success" rates. The lower (European) dosages had about an 8% reoccurence rate but almost know "collateral" damage to nerves." There slightly higher dosages of radiation over three days has only about a 2% recurrence rate, but there goal is 75% of their patients maintain the resources: hearing balance, etc. A few lose a little hearing, even fewer regain some hearing.
To answer your question directly, the comments I made our my synopsis, summary of what Dr. Change told me while in my consultation.
Hi Phyl...
My knowledge of FSR treatment within the UK is very limited other than I believe it usually involves the Linac method as the Novalis procedure (to my knowledge) is not available within the UK. I am therefore not aware of the Gy doseage rates and frequency rates of the fractionated sessions that are administered within UK treatment establishments.
Regards
Derek
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Fellow AN'ers,
I've read so many great post, I'm getting confused about the difference in CK vs.GK. Should this be a question for my Doctor on appt. day Mar12, or can someone clear this up for me?
Nick
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Hi again Nick...
You are absolutely right in your analogy...the avalanche of data, stats, opinions etc can be very confusing.
On the understanding that you are eligible for stereotactic radiosurgery and that either CK or GK will be your chosen option then the next thing to consider is whether CK and GK are both available in your area re on a personal stance, CK is not available anywhere within the UK and therefore my ultimate stereotactic radiosurgery treatment option will be limited to GK.
If CK and GK are both available to you then there is very little to chose between either option relevant to accuracy of the delivered treatment. GK has been tried and tested worldwide for over 35 years and has data and stats to indicate a success rate of around 98%. CK has been available for a much lesser period in consequence of which the long term available data is not as substantive. The other main factor for consideration is that GK requires the fitting of a head frame, which most folks have no real bother with, whilst with CK a moulded plastic mesh type mask is used over the facial area to facilitate the treatment which may have greater appeal to some.
I hope that this brief synopsis is of some assistance to you. Best wishes for a successful outcome with whatever treatment choice you ultimately decide upon.
Regards
Derek
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Nick,
Derek is on the money and Derek... thank you :) I think I owe you Cadbury or Jaffa Cakes on my next trip over! :)
I can share 1 tidbit more on it.... since GK is a single dose treatment and CK is mostly fractionated (yes, 1 dose is sometimes recommended, but for the most part, it's usually done in 3-5 dose), fractionating the treatments thought process is... by fractionating, there is potentially lower risk of the surrounding, normal structures from being affected by the radiation....
(I think I need more coffee, that didn't sound right..., but I think you all know what I meant).
Nick, many of us here that have had FSR/CK/GK are more than happy to loan our good ears (and shoulders) if need be.... you can send any of us a PM here.
Phyl
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Derek and Phil,
Thanks for the info. We did our best through research and info on this site to schedule an appt. with a doc. that is experienced in neurological surgery and sterotactic radiosurgery. Reading your posts answered a lot of my questions before they had become an issue. I'll let you know how my Mar.12 appt. goes. Thank You everyone for your insight and support and all of you sure have mine!
Nick
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Good luck and let us know how it goes.
Ceeceek
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Derek, Phyl and gang: you continue to amaze me with your knowledge! Farm girl here just went for the zap! Nick, I was really pleased with my treatment at Stanford and while I'm not out of the wood, I do have full faith that the zapping will work. Keep us updated on your progress. Annie
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Good luck on the 12th Nick M and welcome!!
Kathy
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Fellow AN"ers
I'm scheduled to have GK surgery on Apr.26. I was very impressed both with Dr. Getch and the Northwestern facility. Dr. Getch is also a co- director of the Gamma Knife facility there. He spent a lot of time with me and answered my questions. We actually had an enjoyable appointment and Dr. Getch and I ended up talking about hunting and the outdoors.
Dr. Getch spent time drawing diagrams, talking about the MRI, etc. with my wife, our daughter (a medical student), and myself. He was interested in the fact that I had an aneurysm/stroke on the same side in 1991. He thinks it is probably a coincidence.
So far so good. Personally, I decided I wanted to avoid surgery if possible, so I was glad that he was in favor of Gamma. In fact, he opened our conversation by saying that 70% of acoustic neuromas treated in 2007 would be treated by gamma knife. Will keep you posted on my experience with the surgery and the after-effects. I have to report one day early for a CTA - some type of CT scan with dye to look at my blood vessels.
I can't tell you how much I value this site and all that I have learned from all of you. Thanks for your support.
Nick