Author Topic: Beginning Stages of Research  (Read 11565 times)

pearchica

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Re: Beginning Stages of Research
« Reply #15 on: January 24, 2007, 03:48:46 pm »
Phyllis thanks for your repsonse- I did call and I have an appointment with Chang for next week.  Again, doesn't hurt to get a second opinion within the same group of doctors.  And great info- I know my family seems to be freaked by the whole radiation thing ( but then they have been freaked about this from day one- nice to be loved!). Take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

pearchica

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Re: Beginning Stages of Research
« Reply #16 on: January 24, 2007, 08:52:26 pm »
Thanks Brucifer- you are right on with leaving no stone unturned.  I worked through my referral coordinator at my primary care physian and ended up with an appointment with Jackler, although my paper work said Chan (not Chang). When I called to get clarification it was the day before the appointment so I went ahead with the appointment anyways. Although I did question Jackler about the option and he gave a very good explination, of course he recommended surgery and we (my husband and I) scheduled accordingly. Ironically, I was having a gut check this afternoon, checked the website and found both your response and Mark's validating the gut check that I hand't done all my homework. So I called the office directly and have Chang next week. Thanks for the posting, I  really do appreciate it. I do have time, and I can always cancel and or reschedule surgery to a later date if that's the ultimate option. Thanks again for taking the time to contribute to the postings.  Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

pearchica

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Re: Beginning Stages of Research
« Reply #17 on: January 24, 2007, 08:56:40 pm »
Oh and Phyl- thanks for the report- what do you mean you are and old lady! (I think I am one year yonger and no way do I think I am old HA maybe that's my problem). Thanks for the posting- inbetween you, Brucifer and Mark, you all validated my gut check today. I really appreciate it- Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Mark

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Re: Beginning Stages of Research
« Reply #18 on: January 24, 2007, 10:54:33 pm »
Hi Annie,

Thank you for sharing that you were going through a "gut check" today. I thought it was worthwhile in my last post to at least raise the issue that Dr. Jackler, while a great AN surgeon, really is not a great source of information on radiosurgery as an option. ( by the way he gave me the same "book" of his An publications, very sobering reading)In essence his response will always duplicate what you get from a doctor from HEI. To use an investing analogy, people who own 20 mutual funds that are all classified as containing large growth stocks think they're diversified, but really probably own the same stocks in each fund. Similarly, 20 neurotologists like jackler or the docs at HEI will all give the same answer re: surgery vs. radiosurgery. That being said, in raising an issue like that I am very sensitive that it doesn't come across that I am ever challenging anyone's decision. There is never a right or wrong in this, just what each individual feels is the best choice for them.

However, I am very glad to hear that you are set up to see Dr. Chang. I would echo Bruce's sentiments that he will provide you a very accurate view of radiosurgery as an option based on your circumstances. Whichever way you end up deciding to go, you can truly say you heard both sides after that visit. Most folks who post on this board would probably say they have a lot of confidence in the docs who finally treated them and I am certainly no different in my view of Dr. Chang. He is one of the few that actually does both options equally and will actually answer the question " what would you do if this was you or a member of your family?" In fact, if you look in the archives of this forum for posts from "CC" you will see her recap of an e-mail exchange with Dr. Chang and the questions she asked which may be of interest. ( Since Phyl is now a high paid web policewoman for this site, maybe she knows a quick way to find it  ;D, just kidding Phyl)

Regarding your questions in the previous post, the most complete explanation of my decision rationale is probably found in my story posted on the CPSG site. In short, while not a clinician, I have been in the medical supply business dealing solely with hospitals for over 25 years and I understand the risks of open surgery, especially a major one like a craniotomy, so yes, if that was avoidable it was a factor for me. More importantly, I weighed the probable outcomes based on all the studies I could find and made my decision based , in descending order, on tumor control , facial nerve preservation, possible treatment complications & hearing preservation. In terms of the latter, my hearing today almost 6 years out is unchanged from what it was before treatment. I think the facial nerve preservation issue was probably the biggest differentiator and I think the stats clearly favor radiosurgery in this area. Actually, what I remember doing was scrolling through this web site and checking how many references to facial palsy / dry eye were made by surgery and radiosurgery posters. The sample would probably be more realistic today than when I did it since there is a larger universe of radiosurgery posters active. So those were some of the things I thought about in my process.

So good luck to you in your meeting with Dr. Chang and , if you remember, tell him I said "hi". Either way you go, please know you are in extremely capable hands as both he and Dr. Jackler are very much world class clinicians. ironically, if you do opt to do the surgery , you may have Dr. Chang in the OR as he is one of the neurosurgeons who partner sometimes with Jackler in AN surgeries  ;)

Best of luck to you

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

ppearl214

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Re: Beginning Stages of Research
« Reply #19 on: January 24, 2007, 11:06:11 pm »
Annie,

I found this old thread in the Archives that may help with a little hint of info from a microsurgical and radiosurgical viewpoint....

http://anausa.org/forum/index.php?topic=2000.0

Initial help.... this web policewoman now off to find CC's thread! ;)

(thanks Mark!)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Battyp

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Re: Beginning Stages of Research
« Reply #20 on: January 24, 2007, 11:20:40 pm »
Hmm...some people will go to great lengths to make sure they get flowers on valentines day!  Geesh!

Annie wishing you all the best on that day!

Pearly girl you too!  You ain't gonna be old you're gonna be spunky!

Mark

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Re: Beginning Stages of Research
« Reply #21 on: January 24, 2007, 11:21:35 pm »
Annie,

I found the old post from CC and will copy it below for your review. I thought I'd better save Phyl from looking for it  :D.

( BTW Phyl, Looking through the archives is a real pain now in this new format)

Mark

Re: Stanford Cyberknife
« Reply #9 on: September 28, 2005, 09:07:22 AM »   

--------------------------------------------------------------------------------

Thanks to all for their comments and assistance - especially Mark whose magic seemed to help things along.

I was provided with Dr Chang's e-mail and the e-mail of a nurse pratitioner in the clinic at Stanford.  I sent off my questions to Dr Chang yesterday afternoon.  By the time I logged on this morning (9am DC time) he had replied to all my questions.  In the interest of wiping Stanford's slate clean here is the nurse practitioner's reply:

"we have 3 nurse practitioners who work in the Cyberknife team.  We do a weekly pro bono review of outside scans a week.  We literally review dozens of scans each week to help people with decisions on treatment.  Usually we try and call the patient to discuss the review.  It is rare that we just send an e-mail.  I will give Dr. Chang an opportunity to answer your ?s.  If you wish to talk to me – you can call me or the other 2 nurses anytime."

I also thought that some may be intersted in Dr Chang's replies to my questions.  They're questions I think most people would ask in a consultation and his answers are considered and in plain english (always a good thing - shows he knows his stuff).  So here are my questions and his answers:


1.   On the basis of the position of my AN in the CPA and its protrusion from the IAC what do you judge to be the relative risks of CK and surgery (which I understand would have to be done through the sub-occipital approach)?

The surgical risks of the surgery include the usual infection, bleeding, stroke, anesthesia, etc.  The specific risks to the hearing nerve for a tumor your size is at least 90% chance of hearing loss even with a suboccipital approach.  The risk of facial nerve injury would be on the order of 20-25% with surgery.  The risks of facial nerve injury with cyberknife is less than 1%, but again, that is an average, so it is possible to have facial injury with radiosurgery.  The probability of maintaining your hearing is at least 70% with radiosurgery, but that means 30% may have some decrease, with the average decrease being 12 dB and an occasional rare patient having complete hearing loss

2.   As you may be aware I am a musician and a key goal in treating this is retaining my hearing given that it’s highly serviceable in the speech range (and <20dB difference between left and right ears).  I am attracted to the CK approach.  Can you tell me precisely what your outcomes are for hearing preservation and tumor control for a 1.77cm AN?

2. As far as hearing preservation, the risk with the cyberknife is not related to tumor size to any significant extent (unlike surgery) so I cannot make a generalization as to how 1.7 cm ANs do.  The average hearing preservation rate is 74 to 77%.  The average dB decrease in all patients (those 70% that maintain hearing and the 30% with decreased hearing is 12 dB).  Incidentally, hearing loss at the time of presentation is also not necessarily correlated to size of tumor.  I have many patient with a AN over 20 mm that have normal hearing, and other with decreased hearing at 5 mm

3.   If I was to have CK what treatment regimen would I undertake?  How many fractions, what dosage (including how much total dosage) and why?

3. We use 18 Gy in 3 treatments of 6 Gy each.  We feel that is the best balance between dose to kill the tumor and minimizing risk to the hearing nerve.  We have used 3 treatments for 12 years now, and our current dose of 18Gy has been used since 1999.

4.   Would you be so kind as to explain the process – how the Accuray machine determines the position of each “shotâ€??  Would you also advise who does the programming?  Do you supervise the procedure or do you delegate it?  If so, to whom do you delegate?

4. The choice of the positioning for each beam is chosen by the computer.  The doctors input the tumor volume, and the computer calculates the optimal beam positions based upon the millions of possible iterations.  The beam positions are not chosen by a human, but by the computer, so there is not any human input as to the choice of beam positions, and therefore nothing that gets delegated since it is all done by the computer.

5.   What is your measured error distance for the “beamâ€??

5. Total clinical error is between 0.9 mm and 1.1 mm for the treatment.  The largest sources of error 0.6 mm actually comes from the errors intrinsic to the CT and MRI images.

6.   How long have you been using this particular protocol? When did you last change your protocol?

6. We have been using our current protocol since 1999, with no changes.

7.   Given no complications, at what frequency would I need to have follow-up MRIs?

7. We typically request MRI and audiograms every 6 months for the first two years, and then once a year for the next two, and then every 2 to 3 years after that

8.   Every surgeon to whom I have spoken has recommended surgery, and every radiosurgeon radiosurgery.  Would you give me a medical reason why in my case CK is preferable over surgery?  Is the tumor sitting side by side with the cerebellum?  If so, and swelling occurs post CK treatments, what damage (and symptoms), both permanent and temporary can I expect?  I am currently reasonably asymptomatic for an AN of this size.

8. I can't speak for other surgeons, but I do both open surgery and radiosurgery, with roughly a 50-50 balance between the two.  Last year I treated 600 patients, with brain tumors, with slightly less than 300 going to the operating room and slightly more than 300 receiving the Cyberknife.  I operate on large acoustic neuromas, and I do radiosurgery on most others.  Since I do both, I try to choose the best treatment option for each patient.   I presume that the other physicians that you mention may only do surgery, for example, but I know of very few people that do radiosugery than do not do open surgery.  I suspect that those that you have spoken to also do open surgery, but I also suspect that those that you have spoken to regarding surgery only do surgery.

Radiosurgery is not zero risk, but the risks are much lower than open surgery.  I base my recommendations in your case on what I would do if I had this tumor or if it were in my mother or father, and if it were me or them, I would choose radiosurgery.  Each patient needs to make their own decision however, so you would need to choose what you feel comfortable with.



I'm pretty happy with the comprehensive replies to my questions.  And, although I offered payment for a phone consultation he refused as apparently insurance companies define "consultation" as a physical examination of patient by doctor and this obviously can't be done over the phone.  So there you are.  Seems this whole episode may have been a glitch in the system but good to make them aware when things go awry.  I would probably have just gone eslewhere had it not been for Mark's intervention.  Lesson to the wise I guess.  I just wait to get House's diagnosis today - primarily to compare information - I really don't want anyone going into my head at this stage now.  Maybe in 10 or 20 years but not now.

CC

 
 
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CC
3cm AN
CK Oct 05
with Dr Chang at Stanford
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

pearchica

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Re: Beginning Stages of Research
« Reply #22 on: January 25, 2007, 06:15:38 pm »
Gang: Thank you! Wow, I am always so impressed by this group's passion. Phyl- like the new picture- Mark and Brucifer- don't worry, I am the youngest in my family and have 4 older brothers so I am used to the male uncensored opinion! HA!  (BTW- very intesting that Mark is in the medical supply industry- that explains your knowledge).  So we will see what Chang says come Wednesday. Again, thank you for taking the time to care about me- it really is wonderful and supportive. Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Ellid

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Re: Beginning Stages of Research
« Reply #23 on: January 25, 2007, 09:14:56 pm »
I made the mistake of telling my family prior to my consulation with the surgeon and consequently gave the family some outdated information ie: 16 hours of surgery according to the ENT guy when in fact it is 3-5 on average.  (Family also was visualizing coffin depsite my reassurance that this is a BENIGN tumor ;D). 

They sound like my ex-husband.  I posted an entry on my LiveJournal about my diagnosis, and he promptly sent me a condolence card on my having cancer!  He then got very pissy and called me a control freak when I rejected his kind attempts at sympathy and sent the card back.

I think you can see why we're not married anymore... ;)

Lisa

Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

Lorenzo

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Re: Beginning Stages of Research
« Reply #24 on: January 26, 2007, 12:54:52 am »
Annie,
All the best for your meeting with Dr Chang, he is a wonderful man. He was my radiosurgeon too. Looking forward to reading yhow you got on.

That ex-husband sounds... well. Ya. Anyway, my family is the same. obituaries were nearly written before I even got to explain fully. And still now, they have absolutely no idea of what is going on. Thing is, I can't divorce them!  ;D

Cioa, Lorenzo

macintosh

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Re: Beginning Stages of Research
« Reply #25 on: January 31, 2007, 09:50:25 pm »
If you want to plow through the primary literature, you can go to <www.pubmed.gov> and use the keyword strings <acoustic neuroma radiosurgery> and <acoustic neuroma microsurgery>. You will find doctors writing to doctors in peer reviewed journals, and the strong consensus favors radiosurgery in almost all circumstances for ANs under 3 cm. Personally, I think the age argument is bogus. If you have radiosurgery and need to get radiated again in 20 or 30 years, so what. Some doctors/researchers are beginning to say that radiosurgery is the best technique for cleaning up failed microsurgeries. I feel pretty strongly about this--my ENT insisted that I had to have surgery, but after reading the literature I decided otherwise. I took a few articles about radiosurgery to my PCP (who up to then believed the ENT), and after about five minutes he said, "This is what I would do." I had radiosurgery yesterday morning, and I took the dogs for a three mile walk yesterday afternoon. I feel fine, and my hearing is about the same as it was going in. If I'm in the tiny percentage of people whose radiosurgery doesn't work the first time, I'll have them do it again. But after reading the medical literature, I will never let anyone crack my head open for an AN.

mykey

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Re: Beginning Stages of Research
« Reply #26 on: February 01, 2007, 12:06:21 am »
Mcintosh,
 I am 48 yrs.old & recently diagnosed with a 2.5 cm AN. I have already confered with one nurotologist who suggest translab. I have appoitments in Feb. with another one and also a neurosurgeon.
 I am going to look at the site you are talking about. Being a musician I would love to keep any amount of hearing I can. In fact loss of hearing is about my only symptom up to now.
 I am having a very hard time with the idea of trading my situation right now for the possibilities of what will and might occur due to translab surgery. IE: facial nerve damage, complete loss of hearing on my right side.
Thanks for the lead on other possible choices.

Mykey
Diagnosed  1/20/2007. Right side AN 2.5 cm
50yr, guitarist for 35 yrs.
Married w/10yr old son.
Translab 4/26/07 at Emory University performed by: Dr. Mattox & Dr. Olson
Surgery successful!
Extended time in ICU due to CSF leaks.

macintosh

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Re: Beginning Stages of Research
« Reply #27 on: February 01, 2007, 12:45:11 am »
Mykey--

I'll pass on what I've come up with re hearing preservation. Those who are doing multiple shot radiation (esp. Hopkins, Stanford) claim significantly higher rates of hearing preservation than with one shot radiation. But there's a problem getting accurate statistics on hearing preservation, because most people who are going in for AN treatment already have some hearing loss, and there is no clear standard for what constitutes "usable hearing." if you lose 5-10% of what you had going in, is that a sucesss or a loss? So it's hard to get precise comparable stats. I took one shot radiation because my AN was small  (7mm), and there was a world class facility (Shands at U. Florida) nearby. If I were a musician, I might have opted for multiple shot radiation.

Good luck. I hope your case turns out as well as mine has, so far anyway. And absolutely do NOT let people who do surgery for a living tell you what to do. Find the best radiosurgery facility in your area and get their opinion.

Mac

pearchica

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Re: Beginning Stages of Research
« Reply #28 on: February 01, 2007, 01:47:26 pm »
Hey Gang: met with Dr. Chang yesterday, who recommended that I go with CK treatment specifically as I have no balance issues.  If I had balance issues, then he would have recommended the retro sigmoid approach that Dr. Jackler proposed.  So I am in the process of scheduling the CK option.  What I have found amazing in this process was how biased the treatment is towards surgery.  And I really had given up hope that radiation wouldn't be a viable option for me.  So to Brucifer, Mark and Phyl, THANK YOU for giving me the inspiration to go the extra step in research. I will always be so grateful to you three for taking the time to address my concerns.

I really would recommend to others to at least talk to some radio-surgeons.  Some interesting facts that Dr. Chang discussed with me and my husband during the appointment are listed as follows:
1. Over 600 patients have been treated for acoustical neuromas, only one has failed to his knowledge.

2. No facial paralysis, hearing remains at currently level and/or slightly decreases-(I think he said 10% on average?? but not sure).

3. If I fall into the 1-2% that doesn’t' get the total bugger (tumor) killed off- a second radiation treatment is completely viable to kill off the remaining cells.

Also my husband questioned "why so many different" recommendations- Chang explained that in his case when he was studying in the 1990s- radio therapy was incorporated into his training. Also Chang gave a great analogy- each doctor has a tool box and he uses the tools that are what he is comfortable with. Most ENT's are only trained in surgery, hence the surgical option is the tool of preference. Chang was supportive of Jackler, i.e. he is one of the few surgeons who will recommend radio-surgery and he works with Jackler on a regular basis.  So what makes Chang unique (and it was Lorenzo that pointed this out to me) is that he is truly unbiased- he has a tool box, he uses the tool that is best for the patient.

Conclusion: this pearchica gets to have cyber knife surgery. WOO HOO!

And to my ANer's, thanks for being so supportive. You all are 'da BEST' - Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

macintosh

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Re: Beginning Stages of Research
« Reply #29 on: February 01, 2007, 10:26:38 pm »
First, congratulations to Pearchica, whose story is very similar to mine. I was told by an ENT that I had to have surgery, and I had to do my own research (including a lot of help from this board) to discover otherwise. I had radiosurgery Tuesday, and I feel fine.

I understand Dr. Chang's toolbox analogy (and it's one I've heard before), and I know that doctors are reluctant to criticize other doctors, but I really do not accept that ENTs and other specialists are doing their jobs properly when they push surgery for small to medium ANs. From what I've read on this board, and from what I heard from my ENT, too many doctors rely way too heavily on personal experience and not on the most recent studies in journals like Neurosurgery and Journal of Neurosurgery. If I can find those studies, so should they. That's their job, and it affects people's lives when they do not give the most recent, state of the art advice.

 


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