ANA Discussion Forum
General Category => AN Issues => Topic started by: tsr on July 20, 2010, 01:34:38 pm
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i had a 1.5 cm An surgically resected ( supposedly completely ) (middle fossa) in 2003 and it has grown back to 10 mm. i am considereing cyberknife radiation treatment which my doctors at UNC hospital (north carolina) are recommending. how do i find out which cyberknife centers/doctors have the most experience/success treating AN's with cyberknife, especially the ones that might have more experience treating post op recurrent AN's. thanks to all.
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Read your post a couple days ago. There was a man at our last local support group meeting who had some sort of second-time-around treatment. I've tried to contact other group members to learn his name. If I find out who it was, and if it's relevant, I'll let you know.
Just ask the docs up front how many ANs they've treated with CK. I was only about the third or fourth AN the docs treated with CK, although they do other brain tumors every week. Pros - Had CK in local area, plenty of folks who know docs and can recommend them, easier for followup, although I haven't been entirely pleased with followup I've received. Cons - I've had some ongoing issues in recovering from treatment, and I have the nagging little thought in the back of my mind whether or not "issues" are the result of their relative lack of experience. UNC has a pretty good reputation for medical care overall, don't know specifics about CK.
Hope others chime in!
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Hi tsr,
Welcome to the Forum! You will find lots of information about CK here as well as on the CK Forum.
[I have been trying to read a lot about CK, as I am in W & W and would choose CK too, if necessary.]
I hear wonderful things about Dr. Chang at Stanford, in California.
However, i am also on the east coast and would be concerned about any post-treatment care and issues.
I am sure others will chime in to help answer your questions.
Keep researching and reading and posting your progress.
My thoughts and prayers are with you.
Sincerely,
Sue
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Hi tsr,
I am currently in pretreatment mode trying also to find a high volume Cyberknife center. If you go to www.cyberknife.com
you can find the centers that use the Cyberknife all over the country. That site also has a patient forum where you can ask questions and get answers from docs.
I live on the East Coast and have met Dr. Barry Hirsch (ENT)who does CK at UPMC (Univ of Pittsburgh Medical Center). I was very impress with him personally and he does a high volume. Have you considered Gamma Knife? I hear Dr. Kondziolka (Neurosurgeon) also at UPMC has a great reputation and does high volume of Gamma Knife.
You can also send your MRI disc to Stanford ( I sent mine to Dr. Chang) and get a consult, no charge, over the phone. I think they do the highest volume but of course that is a trip across the country.
Hope this helps some. If you have any questions don't hesitate to "PM" me.
take care,
Linda
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Hello tsr,
I live in the Raleigh/Durham area, but I'm more familiar with DUKE than UNC. I have met one person who had GK after surgery, and they went to Dr. Steiner at UVA and had no side affects from the GK. Dr. Steiner has been associated with GK from it's earliest use.
As others mentioned, the CK Forum may be able to help with your questions about CK centers. Good luck with your second treatment.
Regards,
Rob
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Hi,
I am new here. Just learned I have AN, only 5mm at this time. My ENT wants me to go to Vanderbuilt in Nashville for a consult which is 9 hrs drive for me. He also said he would recommend surgery over Gamma Knife, but they may recommend watch and wait. Is anyone familiar with any of the drs at Vanderbuilt? I have not heard of Cyberknife, but I have family in CA and I am in MS, so I could probably see Dr. Chang because I visit CA often. I am wondering how would I go about sending an MRI disk to Dr. Chang at Stanford? My MRI was done at the hospital and I did not receive a copy. Also, at this point I am more fearful of the financial burden than anything else. I am a single school teacher with state insurance. I have already been through a year of hearing tests, hearing aides in both ears, VNG, ABR, and MRI so I am already maxed out on credit cards. How does everyone else handle this financially?
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T -
I sent a persona message to my partner in crime, Lori (lori67). She lives in Virginia Beach now, but used to live in Nashville.
She may have some advice on doctors.
Jan
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Hi T....
Jan's partner in crime here! ;)
I had my surgery a little more than 3 years ago at Vanderbilt. The doctors there are amazing and it's a top notch facility. I don't know much about CK, as that wasn't an option for me, but we did discuss it and I know there are doctors there that do it. If you need some names or contact info, let me know.
As far as the financial issues, that's a tough one. I was fortunate enough to have my insurance cover everything. The only thing I had to pay for was the neurosurgeon who worked with my neurotologist because he was not in network. I only had to pay a co pay for him and the cap on that was $1000. He let me pay it a little at a time and considering what insurance did pick up, $1000 seems like quite a bargain for surgery!
I would suggest discussing your concerns with whatever doctor you choose. Most of the offices have an insurance person who can figure out the best way to handle things and really know how to get the most out of whatever insurance you have. As far as the copy of your MRI, you will probably just have to call them to request it. I've never had to pay for a copy of mine, but I know some places charge for it. Your ENT should also have a copy of it if he's the one who sent you for it. Might be best to start there.
If you want to talk or have any other questions, send me a PM or I can send you my phone number.
Welcome to thr forum!
Lori
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Hi all
I had CK done just shy of 5 years ago in Boston at Beth Israel (some other BI CK folks here as well).
When it comes to chosing a radio-team (regardless if CK, GK, Trilogy, Proton, etc), experience is key. Many of these radio-teams meet quarterly to discuss the trends in their treatments, success rates, compare notes. It terrific that they come together as a "think tank" to discuss how radio-treatment options are working, what can be done to improve, post-treatment issues that may be reported to them, etc.
It is also good to obtain "patient referrals" from these teams. Much like inquiring here with other AN patients, its terrific to be able to speak to others that have walked in the shoes. What I can note is that the ANA offers a "Willing to Talk" (WTT) list of many AN'ers that are willing to volunteer their time and energy to speak (ie: telephone, email, etc) to share knowledge and experience. Contacting the ANA directly (you can find their contact info on the home page... www.anausa.org) and asking for the list may be of help. I know many of us are on the WTT list, many noting radiation as the treatment option.
Just my 2 cents for "been there, done that" and for me, being able to speak to those on the list was a terrific help to me in helping me ease anxieties I may have had once I was diagnosed and trying to go through the decision-making process.
Good luck with your efforts... we're here to help!
Phyl
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I am wondering how would I go about sending an MRI disk to Dr. Chang at Stanford?
Email Dr. Chang here: sdchang@stanford.edu
Dr. Chang will review your MRI and advise you for free.
Tsr: Stanford and Dr. Chang have the most experience with using CK to treat ANs. As of 3 years ago, Dr. Chang had treated over 700 ANs with CK. Stanford Univ Medical Center has been using CK on AN patients at least 5 years longer than any other institution; Dr. Adler (Stanford-based doctor) invented CK and Stanford has been using it to treat ANs since 1994, when the facility began clinical trials. It wasn't until 1999 that CK was government-approved for treating ANs by all institutions. Many many doctors travel to Stanford from all over the world to get hands-on training in CK treatment. There are other very experienced facilities, including Johns Hopkins and one in Boulder, Colorado (I can't remember the name of that one). But if you want to be treated by the doctor and facility with the most experience, that would be Dr. Chang and Stanford U Medical Center.
As an aside, I was treated by Dr. Chang at Stanford and have nothing but praise, admiration and deep gratitude for the man and the hospital. As for follow-up exams, you can always have your MRIs and audiograms done at a facility nearest your home and have the results sent to Dr. Chang for his evaluation. Dr. Chang is remarkably available for consultations over the phone and via email, should you have any questions or worrisome symptoms after treatment. He usually responds to my emails within a couple hours!
Best wishes,
TW
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Wow! That was unbelieveable. I emailed Dr. Chang and within seconds he replied!! I will be sending my films. Thank you so much!
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You're very welcome, tgillesp.
Dr. Chang is amazing, isn't he? The first time I emailed him was on New Year's Eve a few years ago, asking if he would consider reviewing my MRI and other tests. He replied to my email within two hours. Within two hours, on New Year's Eve! The man is what every doctor should be, dedicated to his patients (and to even those who aren't yet and may never be his patients). He is a true healer. This is why I tell other forumites who are considering out-of-state travel to be treated by Dr. Chang not to worry about follow-up tests after CK, needing advice long-distance, etc. Dr. Chang is more accessible from hundreds or thousands of miles away than most doctors who are in the same zip code. The peace of mind I get from knowing that makes me feel like I'll be taken care of no matter what the future brings. I can't imagine having a better doctor.
Best wishes,
TW
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Hi tsr,
You might also try going on the Cyberknife Support Forum at http://www.cyberknife.com/ForumLanding.aspx. When I was going through my decision making process I was active in this forum for a while and found the doctors and patients there to be very helpful and compassionate. I don't know if the doctors I communicated with there are still active in the forum (Dr. Spunberg and -- oops can't remember the other doc's name, but I really liked them both). They can probably give you direction and offer advice. Some of the patients may also offer information about doctors in your area.
Best wishes,
Wendy
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Hi tsr,
You might also try going on the Cyberknife Support Forum at http://www.cyberknife.com/ForumLanding.aspx. When I was going through my decision making process I was active in this forum for a while and found the doctors and patients there to be very helpful and compassionate. I don't know if the doctors I communicated with there are still active in the forum (Dr. Spunberg and -- oops can't remember the other doc's name, but I really liked them both). They can probably give you direction and offer advice. Some of the patients may also offer information about doctors in your area.
Best wishes,
Wendy
Wendy (and all)
Dr. Clinton "Buddy" Medbury out of OKC. Screenname: radsrus (cute, eh?). Both, "Dr J" (Spunberg, in FL) and Dr Medbery are still the ones (as well as others) that are volunteering their time to answer patient questions on the CK forums. Have met Dr Medbery in person (a couple of yrs ago when he was in town for a medical conference... waiting for Dr Spunberg to have college reunion at Hah'vaad!) and couldn't be nicer and most of all.... very knowledgeable about all modes of radiation, with a speciality in GK and CK. Don't tell either that I said something nice about them... they won't believe I did that! :)
Phyl
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i have chosen 3 CK doctors and fired 2. so i have experience - not all good? or thsi shows how bad i am at it?
dr 1 was knowledgeable -- she had planned differently than we had discussed as i arrived for treatment 1. on the day that i was again to start, she decided to send me to a neurosurgeon for his inputs. FIRED! - Tulsa, OK
dr 2 was also skilled and knowledgeable. as soon as the CK was over, he felt that his job was done. he said to see the neurosurgeon. this was not as described before we started. his direction had changed to fill the CK machine, not after care. FIRED! Tulsa, Ok
dr 3 - he communicates. he is available. he listens. he does not act as if he is god's gift to AN patients.
from what all 3 said, AN's are not hard to treat by CK --- but the human side is difficult. i now firmly believe that the ability to communicate / listen is the prime selector.
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Hmm, well I took the advice here and emailed Dr. Chang. He emailed me back within seconds and told me to mail my MRI films. He said he would contact me after reading them. I mailed them over 2 weeks ago on Sept 2 and still have not heard back from him. I emailed him again yesterday to see if he had received them and still have not heard back from him. I'm still waiting after 3 weeks for 2 other drs my ENT sent referrals to to call me back. I'm surprised everything is moving so slowly. I hope things will not always be like this once I have chosen a dr and treatment plan. Some days I question whether this is all real or I've been dreaming the whole thing. But I know its real.
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Perhaps Dr. Chang is on vacation ???
You might want to call his office. If he's not on vacation, just extremely busy or something, at the very least you can ask his staff to have him get back to you.
As far as the other doctors go, you need to be proactive. Don't wait for them to call you. Call their offices and tell the receptionists that you need to book an appointment ASAP. Mention you were referred by your ENT - gave his name and that he insisted you see the doctor.
Good luck,
Jan
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Thanks Jan,
I am going to call on Monday. I tried today, but of course, it is Friday and most offices closed half day.