ANA Discussion Forum
Archive => Archives => Topic started by: Mark on August 15, 2005, 08:30:07 pm
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Hi all,
as a follow up to my post yesterday where I pasted an exchange from the Cyberknife board, the patient involved had some specific comeback questions which Dr. Medberry responded to. Whereas the post yesterday focused on the misleading information some surgeons will give to patients, this one addresses some of the more common questions for those considering radiosurgery.
Hope this is helpful
Mark
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PATIENT
Just a couple of clarification questions:
1) Is age a consideration when choosing treatment option? I know the surgery has a longer "history" so there's likely better longitudinal data on long-term results.
2) What are the rates of hearing preservation in surgery vs GK vs CK?
3) I saw a study from Stanford in which a significant number of tumors stayed the same size following CK. Is the goal of the CK to reduce or stunt the growth of the tumor? How often do they "die" or "shrink"?
I want to get this entire episode behind me and to maintain my hearing/minimize my side effects.
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Dr. Medberry
1) Yes, but usually in terms of being more willing to wait it out on slow-growing tumors in elderly patients. Actually, age is always a consideration, but not usually a significant factor in deciding between treatment options. If anything, younger age would argue in favor of the treatment least likely to produce significant long-term complications/side-effects, since the younger patient has longer to endure them.
2) With surgery, hearing preservation rates vary according to the procedure. In all cases, chance of preserving serviceable hearing is low to non-existent. THe situation is less clear with the two radiosurgical options. THere is fragmentary data suggesting that rates of preservation may be about 65% with CK and about 50% with GK, but whether there is a real difference is, in my view, unknown. There are a number of factors that make the subject difficult to interpret. Biologically, one might expect fractionated treatment to be better at preserving normal structures. We are hoping to start a randomized trial.
3) Much of what is seen on images of AN's is not viable tumor cells, and the fibrous stuff stays after treatment in most cases. We generally see slight to moderate shrinkage over months. However, the goal is to kill off tumor cells and prevent further growth, not to produce a normal MRI. Radiosurgery is 98% effective in that regard.
In summary, I think that there are few centers that have radiosurgery available who will now recommend surgery except in very large tumors. There is not sufficient data to allow indisuputable recommendation of CK over GK or vice versa. CK allows fractionated treatment and avoids frame placement.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102
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Maer,
I'm interested to see the originating site forthis info. Can you post the kink?
Gary
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Gary,
you bet, it is www.cyberknifesupport.org
click on message boards , go to the doctor section
Mark
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  Just that a patient might remember...
  "Disclaimer ( from the cyberknife group )
This is a nonprofit site which does not profess to have any medical expertise, however, we have asked doctors to periodically monitor the message board to answer questions regarding CyberKnife treatment. CPSG claims no liability for nor endorses any medical opinions or advice given by doctors on this site. Doctors participating on the message boards are all volunteers and are not financially compensated in any way.The CyberKnife Patient Support Group, established July 2001, reserves all rights to this web site. CyberKnife® is a registered trademark of Accuray, Inc.
Russ
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Russ,
Thanks for posting the CPSG disclaimer to go along with posts I copied from that board. It's an unfortunate necessity in today's world. When one talks about treatment options and potential outcomes for an AN there can be only probabilities based on academic studies and physcian experiences to date. There are no guarantees one way or another. Each one us "rolls the dice" and hopes for the best
Mark
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Indeed, those who maintain the site itself do not have any medical expertise, but the doctors that respond to the patient inquiries certainly do. I think the doctors on that board go above and beyond to answer our questions quickly, and they don't even get paid for their time. Moreover, a couple of doctors on that board practice both radiosurgery AND microsurgery, and in my opinion are the least biased, like Dr. Steven Chang and Dr. William Rosenberg, who on the very thread Mark has quoted, fully agreed with Dr. Medbery about the dishonesty and desperation of alot of surgeons, who stand to lose money to technology, using scare tactics:
Dr. Chang wrote:
"In my experience, I have found the the some MDs are using these scare tactics since more and more patients are choosing to go with radiosurgery, and thus they feel they have to resort to scare tactics to try and prevent even more of their patients from disappearing. However, most patients can see right through these scare tactics, and come away feeling that the doctors employing these methods are less than honest.
I agree with everything that Dr. Medbery states above in terms of statistics.
Steven Chang, MD
Stanford, CA
650-723-5573"
And Dr. Rosenberg wrote:
"I feel obligated to add my two cents, since I am equally outraged by this nonsense. I trained at one of the centers of acoustic neuroma surgery (Massachusetts General Hospital in Boston) where, for years, radiosurgery was considered the wrong choice. Even THEY have come around to radiosurgery for AN. The only thing "unethical" here is the ENT you saw.
William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
Midwest Neurosurgery Associates
6420 Prospect Street, Suite T411
Kansas City, MO 64132
(816) 363-2500
wsr@post.harvard.edu"
http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=2683
As technology and medicine advances, there will be less and less need to open people up, surgery will become a rarity and I think many surgeons see this on the horizon and need to "get while the gettin's good", and that's fine for those who do not wish to embrace technology, or for those who are not candidates for treatment with new technology, but as for me, I'm all for taking 90 minutes out of my day at work for 3 days, walking right next door to the CyberKnife, and walking back to work. That opposed to getting put to sleep with no guarantee of even waking up, coming around in pain to remember I just had my skull opened, staying in the hospital for several days, enduring whatever nerve damage likely occured while my brain was retracted, and then recovering however long that takes while only getting paid 60% of my wages while on medical leave. No thanks, I'd rather give the robot a chance, and the chances are good. If I'm in the minority for whom it doesn't work, then I'll resort to surgery, but if there's a chance to avoid it, I'm there.
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This is my first time on this website. I had Fractionated Stereotactic Radiosurgery at Johns Hopkins Hosp. in April of this year. I was told that the dizziness would get worse for a time, due to inflammation, etc.. Now, after almost 4 months, I am still quite dizzy and get nauseated easily, in spite of Vestibular Rehab.. I am unable to read, or drive. In fact, I am very limited in what I can do. I also have noise and light sensitivity. I do not go back to Johns Hopkins until the 6 month mark (November), but in the meantime I will see my doctor at Mayo Clinic next week to see if he has any helpful suggestions. I so badly just want to feel normal. My hearing on the tumor side comes and goes.
CTerrell
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CTerrel,
It sounds like you need to make an early follow up appointment with the ENT doc...maybe they can put you on a steroid treatment. They also can do another hearing/speech recognition test to see where you are currently at...   Fear not, as this too my friend shall pass :)  and you'll be on the road to recovery.  I still deal with tinnitus, and once in a while some ear clogging.ÂÂ
The good news is that your on the road to recovery! Every patient is different on how they react to the radiation. For me (Gamma Knife), I was just tired for a few days. My tumor swelled from
1.8 to 2.0 cm. I really didn't have any new symptoms from the swelling.ÂÂ
Your still very early in your recovery stage, did you have a large tumor?ÂÂ
Gary
Gary
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I am in Sydney and have a recurrence of an AN that was removed 3 years ago. I am considering Stereotactic radiation instead of surgery but am reading about dizziness and nausea. As i am self employed I can't afford to be off work for too long. When i had my AN removed, i was off work for 1 month. I'd like to hear about the different experiences that people have had with FSR.
Larry
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Larry,
I have my experience posted over on the Cyberknife patient support board under "Mark's acoustic Neuroma". The link is www.cyberknifesupport.org. Dizziness and nausea can certainly occur following radiosurgery, but is not common based on all the CK patients that I have interacted with the last few years. That being said, there have certainly been individuals who have had more severe reactions. In my case, I never had any nausea and only one significant vertigo spell about 8 weeks after treatment that lasted 2-3 hours.
Mark
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As technology and medicine advances, there will be less and less need to open people up, surgery will become a rarity and I think many surgeons see this on the horizon and need to "get while the gettin's good", and that's fine for those who do not wish to embrace technology, or for those who are not candidates for treatment with new technology, but as for me, I'm all for taking 90 minutes out of my day at work for 3 days, walking right next door to the CyberKnife, and walking back to work. That opposed to getting put to sleep with no guarantee of even waking up, coming around in pain to remember I just had my skull opened, staying in the hospital for several days, enduring whatever nerve damage likely occured while my brain was retracted, and then recovering however long that takes while only getting paid 60% of my wages while on medical leave. No thanks, I'd rather give the robot a chance, and the chances are good. If I'm in the minority for whom it doesn't work, then I'll resort to surgery, but if there's a chance to avoid it, I'm there.
Jamie,
While I appreciate your position (and I followed your links to the CK Support website), I would question some of your statements in both forums. You posted statements from the House Ear Clinic website, characterizing them as "scare tactics." These are the opiions of some of the most experienced doctors in the world in terms of treating acoustic tumors. They have clearly cited their position with clinical studies. Which studies have they misinterpreted or misquoted to support their own agenda? Do you truly believe that they are acting out of fear for their livelihood - that technology will soon replace the need for their skills and experience? I liken your characterization to this statement (which I use for illustration only - this is certainly not my opinion): Doctors who advocate radiosurgery are doing it to help pay for the very expensive machines their hospitals have purchased for them. They see the latest delivery technique GK, CK Proton, Novalis, Peacock..whatever, like I see the new Nano Ipod. "Hey let's try this new technology and see what it does."
I think in the vast majority of cases, doctors tell you what, in their experience and research, they truly believe. Just as other professionals disagree, I believe doctors do. This does not make them unethical. Not giving an honest opinion is unethical.
I have a fairly extensive family experience with both treatent methods (My father, brother, and I have NF2), and have felt and seen the effects caused by both. Regrowth, both after surgery and radiation, facial nerve damage, and deafness have become part of my families life. I encourage you to consider your characterizations carefully before posting them. I mean no offense. Please accept my apology if I have offended you.
Sincerely,
Jeff
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While I appreciate your position (and I followed your links to the CK Support website), I would question some of your statements in both forums. You posted statements from the House Ear Clinic website, characterizing them as "scare tactics." These are the opiions of some of the most experienced doctors in the world in terms of treating acoustic tumors. They have clearly cited their position with clinical studies. Which studies have they misinterpreted or misquoted to support their own agenda?
They provided no clinical studies on acoustic neuromas, quite the contrary, they stated only opinions based on long term results of pituitary adenomas, a completely different kind of tumor made of secretory cells from the anterior lobe of the pituitary, not schwann cells of nerve sheaths, so to compare those results to AN's, while not stating results of actual acoustic neuromas, which have been treated with gamma knife as long as pituitary adenomas I believe is entirely misleading. Why would they not report the long term results available for AN's, while reporting results of a biologically unequivalent tumors when long term studies are available for both? Because the AN control rate is much higher than pituitary adenomas. They may be highly experienced surgeons, but they have no business reporting on radiosurgery since they do not practice it. They also use the completely unfounded scare tactic of future malignancies or malignant transformation following radiosurgery, the studies they cited for that......non-stereotactic radiation administered to apes. Funny, there have been VERY few cases of malignant transformation following radiosurgery, and an equal amount of malignant transformation following surgery. And there also have been no reported cases of new malignancies forming due to radiosurgery, despite 30 years in use. And they supplied no evidence, other than speculation based on non-stereotactic radiation applied to healthy tissue of apes. But you're right, they didn't misinterpret or misquote any studies, because they didn't provide any, just misinformed speculation to support their agenda.
Do you truly believe that they are acting out of fear for their livelihood - that technology will soon replace the need for their skills and experience?
Absolutely. Do you truly believe they are in their profession strictly to help people? Try scheduling a surgery through House without insurance. And I believe technology will replace the need for surgery, as I've stated.
I liken your characterization to this statement (which I use for illustration only - this is certainly not my opinion): Doctors who advocate radiosurgery are doing it to help pay for the very expensive machines their hospitals have purchased for them. They see the latest delivery technique GK, CK Proton, Novalis, Peacock..whatever, like I see the new Nano Ipod. "Hey let's try this new technology and see what it does."
If that's how somebody felt, they would be entitled to that opinion. However GK is far from "new technology", and the newer forms of that technology have the same effect as GK, the radiaition effects the tissue the same way. Radiation has been used in medicine since the early 1900's, so the "new technology" argument holds no water.
I think in the vast majority of cases, doctors tell you what, in their experience and research, they truly believe. Just as other professionals disagree, I believe doctors do. This does not make them unethical. Not giving an honest opinion is unethical.
No, in the field of medicine, a doctor's opinion must be based on hard fact, not speculation or myths, otherwise it's not honest, and not ethical.
I have a fairly extensive family experience with both treatent methods (My father, brother, and I have NF2), and have felt and seen the effects caused by both. Regrowth, both after surgery and radiation, facial nerve damage, and deafness have become part of my families life. I encourage you to consider your characterizations carefully before posting them. I mean no offense. Please accept my apology if I have offended you.
NF2 is a much more complicated genetic issue than those of us with spontaneous tumors, in which regrowth after either treatment form is more likely than in spontaneous tumors. You're experience, while duly noted, does not apply to those of us with spontaneous tumors. My opinions are just that, but I stand by them firmly. I am not a doctor, but I work with many as part of the healthcare industry, and aside from a few noble exceptions, most are in it for the money, including radiation oncologists. However, I have not seen any cases of radiation oncologists using unfounded myths or irrelevant studies to deter patients from surgery. I take no offense, and assure you my characterizations have been fully considered before posting. If you have some studies you can provide that support what the House site claims, please provide them, because they certainly didn't. I enjoy debate and would love to compare studies. ;D
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Jamie,
You make some great points. I appreciate your candor. I certainly understand that NF2 is a very different situation, with a totally different outlook and goals for quality of life, as compared to unilateral patients. I did not mean to imply that my family's experiences were indicicative of anything. I was only trying to clarify how my views have been shaped. I do think (be it naive or not) that the House doctors I have dealt with are truly passionate in their wish to help patients. I have seen them waive their fees to help at least one acquaintance of mine. They have pioneered a technology called the auditory brainstem implant (ABI) to help NF2 patients to have some sense of sound after they lose normal hearing. Most recently, they are testing the Penetrating Auditory Brainstem Implant (PABI) http://www.hei.org/news/pabi/pabipresskit.htm . I am hopeful that I may join this linical trial when I need surgery again. Without question, implanting these devices is not a financially beneficial proposition for them. They do it to help those of us who have NF2.
You have obviously selected your course of action based upon your understanding of the facts, and I think that is great. The one thing I have learned through my experiences is that we all have to choose the course that we can be happy with. I wish you the best.
Jeff
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Well, I had my tumor removed in St. Louis, not House. I had complications not related to to the AN (I have had a reaction to the bone cement) While researching what could be done, I spoke to a doctor at house for over an hour on the phone regarding my situation. They were helpful but said that it would be best if doctor Brackman spoke with me. Doctor Brackman then called me and offered to call my doctor (when he found out who my doctor was he said it was unnecessary as he was a very experienced doctor)
If they were just in it for money, they would have attempted to get me to come to LA. They only asked me if I was seeking to go out there. I told them I wasn't planning on it. This was before our conversation even started.
As for all the troubles of AN surgery. I was out of the hospital in 2 days. I had more problems with morophine than with the surgery.
It is a personal decision people must make. however I do not believe that we will ever be able to do away with surgery.
Also I see many people taking the radiation route because they fear being cut open. I do not see this as an informed decision but rather a fear motivated decision.
I prefered to go through life knowing that my headache was just a headache and not worrying that maybe my tumor had started regrowing.
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I do think (be it naive or not) that the House doctors I have dealt with are truly passionate in their wish to help patients.
I'm sure they are, and I believe the same of my radiation oncologist at Barrow Neurological, another center of excellence, to me he came across as very genuine in his concern for me as a patient. However, they must get paid to keep their facilities state of the art and their practices going, not to mention making all the money they spent in school worthwhile. I didn't mean to portray the House doctors as money hungry brain butchers, but I did find their representations of radiosurgery completely speculative and based on myths, not fact. It's not just the House surgeons, it seems to be just about any surgeon who does not also practice radiosurgery, I'm sure there are a few exceptions, but not many.
I have seen them waive their fees to help at least one acquaintance of mine.
I find that pretty astonishing. They performed surgery for free? Was your acquaintance a patient before who had regrowth? I'm curious as to the circumstances, but I understand if you don't wish to elaborate.
They have pioneered a technology called the auditory brainstem implant (ABI) to help NF2 patients to have some sense of sound after they lose normal hearing. Most recently, they are testing the Penetrating Auditory Brainstem Implant (PABI) http://www.hei.org/news/pabi/pabipresskit.htm . I am hopeful that I may join this linical trial when I need surgery again. Without question, implanting these devices is not a financially beneficial proposition for them. They do it to help those of us who have NF2.
I wish you the best of luck with the trial. And again, I understand NF2 is a special situation, and I must admit I don't know alot about it except it's rare and it causes bilateral AN's. I'm also not well versed in how effective radiosurgery is for NF2.
You have obviously selected your course of action based upon your understanding of the facts, and I think that is great. The one thing I have learned through my experiences is that we all have to choose the course that we can be happy with. I wish you the best.
Yes, I selected CyberKnife based on my understanding of the facts, also because like you, my situation is fairly unique. My schwannoma is not an AN, it's on the lower cranial nerves, and surgery is more difficult, total resection would very likely result in damage of multiple nerves. For me, surgery is a last resort. Thank you for your well wishes, and I wish you the best as well. :)
Well, I had my tumor removed in St. Louis, not House. I had complications not related to to the AN (I have had a reaction to the bone cement) While researching what could be done, I spoke to a doctor at house for over an hour on the phone regarding my situation. They were helpful but said that it would be best if doctor Brackman spoke with me. Doctor Brackman then called me and offered to call my doctor (when he found out who my doctor was he said it was unnecessary as he was a very experienced doctor)
If they were just in it for money, they would have attempted to get me to come to LA. They only asked me if I was seeking to go out there. I told them I wasn't planning on it. This was before our conversation even started.
I doubt they would be so rude as to say, "if you're not coming here, we won't talk to you", it's well known that House does free phone consultations, and it would damage their reputation for that to be conditional. They may also feel that even though you're not initially planning on going there, you may change your mind after the consult. It's also possible that Dr. Brackman did not want to step on your surgeons toes, so to speak, being as he knew your doctor and they may be friends or acquaintances.
As for all the troubles of AN surgery. I was out of the hospital in 2 days. I had more problems with morophine than with the surgery.
All the troubles of brain surgery do not occur in every case. You're body was able to cope with the invasive procedure very well apparently. I never said surgery was a bad option, but we should all have all the facts before choosing an option, and no medical professional should comment to a patient about a treatment option outside his/her field. They should inform the patient of the existance of other options, and if the patient wishes to explore that option, they should be referred to a specialist in that field.
It is a personal decision people must make. however I do not believe that we will ever be able to do away with surgery.
You don't think so? With all the studies underway now involving tumor targeting viruses and nanoshells? Technology continues to advance, I'm almost 100% sure surgery, at least for tumors, will disappear in the not so distant future.
Also I see many people taking the radiation route because they fear being cut open.
Well that's a no-brainer. It's not a natural occurance to have your head drilled into and your skull opened.
I do not see this as an informed decision but rather a fear motivated decision.
A patient can become informed, when fear motivates them to explore other options before jumping head first (no pun intended) into brain surgery.
I prefered to go through life knowing that my headache was just a headache and not worrying that maybe my tumor had started regrowing.
It would seem then you made a fear motivated decision as well, but your fear was of radiosurgery failure. I guess our decisions are based on what we fear most as individuals. However, if you were told that surgery guarantees your tumor will not regrow, I'm afraid you did not make an informed decision. There are many on this board that will tell you surgery guarantees nothing. An informed patient should be aware the tumor control rates for surgery and radiosurgery are just about the same. That's fact. There are no right or wrong choices as long as the patient is fully aware of all the facts about both procedures. I wish you the best, and I hope your tumor never grows back. :)
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"I have seen them waive their fees to help at least one acquaintance of mine.
I find that pretty astonishing. They performed surgery for free? Was your acquaintance a patient before who had regrowth? I'm curious as to the circumstances, but I understand if you don't wish to elaborate. "
I'd like to share with you the following. I know these events to be true.
About 4 or 5 years ago on the old ANA listserve a posting appeared that touched many of us. A young girl. age 10 was diagnosed with a large AN. They lived in Jakarta and basically the doctors there could no nothing, they sent her home. Reading between the lines they basically sent her home to die.
It was a desperate plea for help from a mother who dearly loved her daughter.
A short time later a second posting appeared. The matter was brouight before the doctors at The House Clinic. The decision was made to offer this child free treatment and hospitalization, as well as a place to stay during recovery. No other medical treating facility offered help, even tho requests were made by members of the listserve. Ezzy was in serious need of immediate treatment. She was very symptomatic and declining as time went by. From point of posting the first message to treatment was 3 months.
Thanks to members of the old listserve, funds were privately raised to cover the airfare for both Bina and Ezzy. (all told about $1800.) The average wage in Jakarta was about $100. a month at this time so the gift of airfare was very important to the treatment and was the last stumbling block to treatment.
The tumor turned out to be a giant cell tumor rather then a AN. Regardless Ezzy still needed surgery to save her life.
Drs Brackman and Dr. Hitselberger did a wonderful job. Every medical need that Ezzy needed was met by the The House Doctors. Ezzy retained her beautiful smile, and she is leading a full and wonderful life.
No publicity for personal gain was ever done. A short segment did appear on the local TV stations in the area of LA. Basically a feel good, fill in type story, the type the news stations run on slow news days. At no time has The House used this child for any personal gain. Nor is this event known by many outside of the circle of people that responded.
I was blessed to be a part of this. I will be forever grateful to Dr. Brackman, Hitselberger and other members of the medical team and office staff that worked so hard to save a childs life. I believe that this speaks volumes about the Doctor's and The House Ear Clinic.
How do I know these events to be true? Because I was the person that organised and set up the account for the airfare. We received contributions mainly from members of this listserve and some of my co workers. Together we as a group came together to make a miracle happen. A Mother's love for her child was able to move mountains.
Raydean
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Raydean, thanks for sharing that great story. I was member on the old site almost two years ago when I was in need of support and advice. At that time there was a lot of bashing going on between radiation and surgery patients which created much more emotional stress for me as a new member. Seems like it's heading in that direction again. I wanted to be 100% comfortable with my choice and I chose surgery. The tumor is gone and I have no regrets (at least today) but if that tumor ever grew back I would like to know I can come back here and seek new and additional advice without someone pointing fingers and saying "Ha! should of listened to me." I'm sure the same can be said for radiation patients whether it be 5, 10 or 20 years from now if treatment should fail and require another treatment (same or alternative.) I've seen some good people leave that old site because all they wanted to do was help but instead others attacked them and their decisions. It would be a real shame if this site goes in that direction again. I don't wanna debate or even root for one particular side. Personally I think both procedures are very effective. Long term was an important factor for me since I am only 36 years old and if 40 years from now I have no regrowth then it's mission accomplished. I am optimistic. I do enjoy informative and unbiased advice just like everyone else does but where do we draw the line. I wouldn't criticize a well respected doctor knowing he couldn't even defend himself. My family doctor had his AN removed surgically ten years ago. I also read about a doctor who was glad to have radiation. About the doctors being out of jobs doesn't make much sense to me since there will always be larger tumors to remove and doctors probably make more money being in their office and making rounds versus surgery itself anyway. Dr. Brackman wasn't my doctor and I had surgery close to home (east coast.) I sent a letter to Dr. Brackman with some technical questions that I wanted to get his point of view on and sure enough he answered every question in order and in great detail. I couldn't believe my eyes when I received that letter. Here is a doctor that is so incredibly busy and doesn't even know me or even has me as a patient taking time out of his day to answer my questions. There was no money to make off me ...I already had surgery and mentioned it early in my letter. Many doctors would have tossed that letter. Take Care!
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I believe the story is true, and it's awesome they would do that for that little girl. But it's not only the House doctors who have reached out to help children from underdeveloped countries, there have been several other instances (conjoined twins, etc.) where American physicians have done this. Unfortunately, there are still many children that do not get the help they need, even here in the U.S., and House or any of the others will not do this regularly. I'm not questioning their motives, or saying they were not genuine in their concern for this child, but the physicians would not be able to stay in business to offer these occasional outreaches if it weren't for paying customers. House has $100,000 brain surgeries lined up like jets on a runway. If the majority of patients started choosing radiosurgery as their first treatment of choice, House would lose ALOT of money. You can be assured they know that.
And that's really what this discussion is about, doctors intentionally providing patients with misinformation based on myths about medical procedures they do not specialize in, in order to stay in business. I understand there are probably many folks who would still choose surgery when provided with accurate info about both treatments (in order to get the tumor out right away) but not nearly as many, in my humble opinion.
The fact remains, House's website provides misinformation, myth, and pure speculation instead of medical facts when explaining the option of radiosurgery. House is affiliated with a community hospital, and their assertions about radiosurgery directly conflict with the research and info provided by the many major teaching facilities that offer both surgery and radiosurgery.
sdinapoli
I am not "bashing" anybody or any option, it just upsets me that the radiosurgery option is so blatantly misrepresented by a facility that does not practice it, and those misrepresentations are parroted by patients of that facility to newly diagnosed patients. I'm sorry if legitimate oppositon to that caused you any emotional stress, but you still chose the option you felt was best for you, hopefully with accurate understanding of both.
I know House patients are as loyal a group as humanly possible, and I respect your devotion. All I ask is that newly diagnosed patients have the opportunity to explore both options, without being fed myths and misinformation about either. That's all. :)
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Jamie, I am sure the radiation sites promote their treatment just as much. This is the world we live in. That is what makes this site so unique. We get to hear actual stories of real people dealing with the same common problem. It's not like surgical patients enjoy getting their head drilled open any more than a radiation patient getting an invisible lightning bolt through their head. We need opinions and stories on all forms of treatment and I'm glad you are here trying to help. We will always be here for one another and that alone is a relief.
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My above posting was in response to your reply to a previous posting regarding The House Ear Clinic providing free surgery. ÂÂ
My personal opinion is that both surgery and radiation are valuable tools in the treatment of AN. The "right" and "best" choice of treatment is the option that a patient choses based on evaluations from all treatment options. It's a highly personal decision based not only on the medical condition, but life style, responsibilites and a host of other reasons. Kate Besserman on the ANworld website www.anworld.com has an excellent article on "One size does not fit all" that addresses the issues.
The House Ear Clinic is a world renown place of excellence. I am well aware of
the "Hall of Shame" that the archives has placed this premier facility in. As the wife of a AN patient that was treated under emergency conditions by a doctor that did not have the specialize training as this regional center of excellence has. I wish circumstances would of allowed us the option of his being treated at The House or other regional center of excellence. It would of made a difference in quality of life issues. I am always concerned when I see postings bashing any treatment facilities of any treatment option. ÂÂ
Regardless of treatment option chosen it is of the upmost importance that a patient chooses a medical team with vast experience in the treatment option of choice for the best possible outcomes. I am sure this is one of the reasons you made the choice of Barrows.  No one is questioning your choice of treatment, or facility. I would ask the same respect of you for other facilities. At the table of AN there is room for all.
Best to you
Raydean
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Jamie, I am sure the radiation sites promote their treatment just as much. This is the world we live in.
I agree. Providers of both treatments have a vested interest in promoting their treatment. However, I have not seen any sites promoting radiation while posting false information about surgery. I just think providers of each treatment should respect each other's specialty, and not comment outside of their field.
It's not like surgical patients enjoy getting their head drilled open any more than a radiation patient getting an invisible lightning bolt through their head.
The invisible lightning bolts weren't a big deal, but I did feel pretty cruddy each night after treatment. Radiation is not something to take lightly I agree. Also, right now I look like a leopard on one side of my head because of all the bald spots, lol. But it was a risk I was made well aware of, and I took it. Hopefuly it grows back, but if not, what can I do. I won't let it get me down.
We need opinions and stories on all forms of treatment and I'm glad you are here trying to help. We will always be here for one another and that alone is a relief.
Absolutely. :D
My above posting was in response to your reply to a previous posting regarding The House Ear Clinic providing free surgery.
Thank you for sharing that story. I'll admit I'm surprised and humbled that they took the time to help that girl. You're a great person for coordinating it and the world needs alot more people like you. :)
My personal opinion is that both surgery and radiation are valuable tools in the treatment of AN. The "right" and "best" choice of treatment is the option that a patient choses based on evaluations from all treatment options. It's a highly personal decision based not only on the medical condition, but life style, responsibilites and a host of other reasons. Kate Besserman on the ANworld website www.anworld.com has an excellent article on "One size does not fit all" that addresses the issues.
See, we totally agree. As long as the patient has correct information to weigh, they are in charge of their treatment and will make the best decision based on all the facts.ÂÂ
I am well aware of the "Hall of Shame" that the archives has placed this premier facility
ANarchive was created and maintained by patients not medical professionals. However, I'm not aware of any "Hall of Shame" on that site, I'll look again. The only criticism I have seen on that site about House, is that of the perpetuation of radiosurgery myths by them. That hardly amounts to being placed in a "Hall of Shame", unless all the merits of a facility are based on the info they give regarding alternative treatments.ÂÂ
I am always concerned when I see postings bashing any treatment facilities of any treatment option.
The thing is, I wasn't bashing any facilities or options. Please show me where I bashed anything, in fact I've stated several times that I'm sure the House surgeons are excellent at what they do. I just took issue with their statements about radiosurgery. Again I say that a medical proffesional should not comment outside of their field, especially when using irrelevant studies and pure speculation to do so. You're concern is unfounded, and you seem to be assuming that criticism of any kind equates to bashing, when it does not. ÂÂ
Regardless of treatment option chosen it is of the upmost importance that a patient chooses a medical team with vast experience in the treatment option of choice for the best possible outcomes. I am sure this is one of the reasons you made the choice of Barrows.  No one is questioning your choice of treatment, or facility. I would ask the same respect of you for other facilities. At the table of AN there is room for all.
Hey, that's the motto of this site isn't it? ;D Actually I chose Barrow because they are right nextdoor to my work, lol. And because they're a center of excellence. Also, I never questioned anybody's choice of treatment or facility. This all started when Jeff posted that he disagreed with a posting of mine on the CyberKnife support group in regards to scare tactics being used by neurosurgeons, in which I linked to the House sites page on radiosurgery as an example of those tactics, and my views on how it was disappointing that such a reputable group of doctors would resort to that. He also seemed to object to my personal opinion that I would rather not have my head cut open if I didn't have to.
I ask you to find where I directly questioned anybody's choice of treatment, or stated that the House doctors are not excellent surgeons. It never happened, I'm only concerned that newly diagnosed patients may be wrongfully turned away from radiosurgery, because of the ongoing spread of myths and misinformation. Like you said, there is room for all at the AN table, but there is no room for false information. :)
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I feel I must apologize to all. It was never my intent to instigate problems. If you feel that I have done so, please accept my apology. Jamie, if I seemed to be judging your, or anyone elses treatment choice, I am truly sorry. I could not presume to tell anyone what they should do. I only meant to ask Jamie for clarification on her statements. I have to say, I am glad I asked, because I hadn't read the House perspective in a while, and Jamie made some good points. Will I stil be treated there? Absolutely. Am I trying tell others they should go there for treatment? Only if they want to. As for surgery, I wouldn't wish it on my worst enemy. I certainly would avoid it if I felt it to be the best thing for me and my life goals. Every person is different. Their goals and personal situations will have a great effect on their treament choices. It was not my intent to uestion anyone's choice.
Jamie, I agree with your assessment of Barrow. I had my first AN surgery there in 2002. Dr. Spetzler is a top notch surgeon and I spoke with Dr. Porter about GK on the residual tumor afterward. I would likely choose radiation if I had a tumor such as yours. In fact, I have tumors in my neck that I may choose to have irradiated if treatment is necessary.
I am sorry if I have caused dissension among group members. Dealing with these tumors is hard enough as it is. Please accept my apology.
Jeff
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Jamie, I believe that you mentioned in a previous post that surgery was never a possibility or consideration for you due to the location of your particular tumor so basically all along you had only one option. You really didn't have to go through that emotional rollercoaster on what treatment to select. It's a little different when you have hearing loss, balance issues, tinnitus, stabbing pains on a daily basis along with the possible threat of future growth and brainstem invasion. I'm sure you have your own set of side effects and I hope they are mild.
Also, I believe you recently had treatments so maybe your high expectations are a bit premature. Same goes for me. I hope all works out perfectly for you in the long run.
It's been a while since I personally been on the House website so I quickly reviewed it again and I personally don't see any problems. The House site seems to support all (I'll Carefully Say Comments) through their very own expertise and experiences which are many. There are "trade offs" for all treatments. Choose your poison then live life to the fullest!
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I only meant to ask Jamie for clarification on her statements.
His statements. Darn this unisex name! lol  :P
Dr. Spetzler is a top notch surgeon and I spoke with Dr. Porter about GK on the residual tumor afterward. I would likely choose radiation if I had a tumor such as yours.
Yeah, my treatment was planned by Dr. Kresl and Dr. Porter, also an ENT, Dr. Josen. I'd never heard of an ENT learning radiosurgery but they're doing it at Barrow. I went to Dr. Josen for my hearing and vocal chord tests, and he said he felt I was making the right choice with CyberKnife, he said he felt I was too young for such a surgery and joked that I have my whole life ahed of me to have surgeries. He said this is what CyberKnife was made for. Personally, I was really blown away by this coming from an ENT, as they usually push for surgery. ÂÂ
In fact, I have tumors in my neck that I may choose to have irradiated if treatment is necessary.
Hopefully it won't be. ÂÂ
I am sorry if I have caused dissension among group members. Dealing with these tumors is hard enough as it is. Please accept my apology.
No need to apologize, you had a legitimate concern about my feelings that I was glad to address. House has a very loyal following and fully expected the responses I have recieved. I am always more than happy to address anybody's concerns with my posts, and clarify my position whenever necessary. Thanks for giving me the opportunity to do so. :)
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Jamie, I believe that you mentioned in a previous post that surgery was never a possibility or consideration for you due to the location of your particular tumor so basically all along you had only one option. You really didn't have to go through that emotional rollercoaster on what treatment to select.
Surgery was an option, however it is riskier than an AN as far as nerve damage goes. It's very similar only it's a little bit lower than an AN, and it affects different nerves. Instead of trouble hearing and balance issues, I would have trouble swallowing and voice issues. I went through the exact same roller coaster ride. I was back and forth for a couple weeks.
stabbing pains on a daily basis along with the possible threat of future growth and brainstem invasion. I'm sure you have your own set of side effects and I hope they are mild.
Oh I had stabbing pains, I thought I had a really bad ear infection for a couple months, but no fever. Finally I got tired of it and went tothe doctor who ordered an MRI. Brainstem invasion is equally a threat with me, as it's almost the same as an AN, just a couple cm lower. After CyberKnife, that earache is gone.
Also, I believe you recently had treatments so maybe your high expectations are a bit premature. Same goes for me. I hope all works out perfectly for you in the long run.
I have a upper ninety percent expectation, which is not premature, but based on studied tumor control rates. You should have the same high expectations, and if you're in the unlucky minority you will have to cross that bridge when you come to it, just as I will do. I won't live my life worrying about a 2 to 5% chance. After 5 years, the chances of a tumor regrowing after radiosurgery is even more slim.
It's been a while since I personally been on the House website so I quickly reviewed it again and I personally don't see any problems. The House site seems to support all (I'll Carefully Say Comments) through their very own expertise and experiences which are many. There are "trade offs" for all treatments. Choose your poison then live life to the fullest!
They have no expertise in radiosurgery, and their comments are based on pituitary adenomas (which are made of entirely different cells than schwannomas), and high doses of non-precise radiation administered to the healthy brain tissue of apes. I ask why they would cite results from a different kind of tumor, when AN's are more common, and have been treated as long. ??? I personally see alot wrong with their comments on radiosurgery, and if you wish I can provide you with many peer reviewed studies on actual schwannomas that directly contradict their comments. Please don't take my personal grievance with their site as anything personal, and I wish you the best outcome with the treatment you chose. :D
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Part of the problem between the two seperate options is that radiation and surgical doctors will put the best spin favorable to their specialty on basically the same statistics.ÂÂ
Personally i would like to see more standardization in measurement of tumors, hearing preservation and general better record keeping across the board. Measurements vary from doctor to doctor. Hearing tests are not done on the same basis. Patients will transfer to other doctors and the information is not kept, or sent back to the original doctors. There's alot of "lost" information that would be very valuable and in the best interest of AN patients. Regrowth for example is in my humble non medical opinion is greater then what both options list. More often then not the a patient will seek treatment other then from the first medical team. There's alot of valuable information floating around that would aid us in the decision making process.
Wouldn't it be great if we had some doctors within both treating options willing to sit down and discuss and set standards. I believe we will all benefit.
Just a thought.
Raydean
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Howdy, one and all!
Wow, great discussion! What I truly enjoy is what I read through the lines - while we all must make our decisions ourselves, based on the best information we can find, we're all in the struggle with AN together.
Raydean, I love you idea! Wouldn't it be great if we came to see the House Microscopic and Radiological Surgery Center? Or the Barrown Cyberknife and Microscurgery Center? Having all the treatment options at hand would certainly (at least, hopefully) diminish the bias held by doctors in their particular expertise.
Along those lines, I am happy to say I've found a doc who will do both, right here in Las Vegas. (And, even better, he's 'In-Network', that most blessed of insurance terms!) ;D
After discussing my AN with him (and having him remeasure it based on the MRI), he has decided on two-prong approach: translab surgery to remove the tumor, with the possibility of leaving a piece of it's too enmeshed in the facial nerve; and a follow up GK treatment if any remaining tumor shows signs of growth. Makes me feel pretty good!
As always, thanks for everyone's input, support, ideas, tears, and laughter! My surgery is November 7, so I'll keep everyone posted about my progress.
Josh
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Or the Barrown Cyberknife and Microscurgery Center?ÂÂ
Actually, Barrow Neurological does CyberKnife, gamma knife, and microsurgery. They just built a huge add on to St. Joseph hospital where they will be conducting alot of research. :)
(http://www.thebarrow.com/common/images/construction_BarrowTower.jpg)
http://www.thebarrow.com/home.asp
I was very lucky to have seen Dr. Porter, a neurosurgeon there, first. He told me of all three options, and the true risks associated with them. When I decided to go with CyberKnife he set me up to see Dr. Kresl and never once said radiosurgery would probably fail, or that I was too young. Of course he was involved in the treatment planning as well, but he never tried to pressure me into surgery.
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After discussing my AN with him (and having him remeasure it based on the MRI), he has decided on two-prong approach: translab surgery to remove the tumor, with the possibility of leaving a piece of it's too enmeshed in the facial nerve; and a follow up GK treatment if any remaining tumor shows signs of growth. Makes me feel pretty good!
That seems to be the new standard approach alot of surgeons who are also trained in radiosurgery are taking. That is what Dr. Porter suggested if I had chosen surgery, debulking followed by CyberKnife to kill the remaining. He said they do this to further minimize the risk of nerve damage, but my tumor wasn't pressing the brainstem or anything, so surgery wasn't necessary. Perhaps soon House will also come around to this procedure, combining the most experienced surgeons with the best technology.
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No I weighed the options and decided that at 28 I did not want radiation in my head. (I have a second spot inside my head that has not changed but would not be operable if it were to become invasive, I don't want to provoke it in any way)
Also AN's do not respond as well to radiation as cancerous tumors which was a factor in my decision.
Additionally delayed onset of symptoms from radiation were troubling to me. I wanted to take action. I wanted to have the tumor removed. Since I had Translab for my large AN there is a very small percentage chance of reoccurance but it can never be ruled out.
With radiation the tumor is not gone. It is still there it will always have to be monitored to be safe. My tumor is gone, and while I will have checks throughout my life to make sure it does not regrow I would not have the same confidence with radiation.
Also one of the neurosurgeons said he would be comfortable having me look into radiation.
Everyone deserves the best outcome and I don't think scare tactics should be used for either approach.
As for house, a free consult is one thing. Spending hours on the phone with you is another. My surgeon does not spend that much time on the phone with me.
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No I weighed the options and decided that at 28 I did not want radiation in my head.
Wow, we're the same age. However, I see your fear of radiation the same as you see my fear of knives and drills, as emotive. Just as surgery is a part of everyday life, so is radiation. We are exposed to it everyday, even as you read this post on your computer....
What is Electromagnetic Radiation
Many of us spend much of our workday and sometimes even our leisure time in front of a computer monitor. Electromagnetic fields (EMFs) are invisible lines of force that occur whenever electricity is being conducted, whether from a natural source such as the sun, lightning bolts, or atmospheric and solar disturbances, or a man-made source such as electric lighting, microwaves, televisions, or computers. Computer monitors generally emit an extremely low frequency field, called ELF, and they also give off energy in the form of static electric fields and high-pitched sounds
http://www.slais.ubc.ca/courses/libr500/02-03-wt1/www/A_Davis/radiation.htm
(I have a second spot inside my head that has not changed but would not be operable if it were to become invasive, I don't want to provoke it in any way)
That's an understandable factor in your personal decision making process. Did they say what they think it may be?
EDIT: to add that unless the second spot is very near (within millimeters) the location of the AN, I don't think there should be any radiation provoking it, perhaps you are confusing radiosurgery with x-ray therapy?
(http://www.accuray.com/ck/images/precise_targeting.gif)
Also AN's do not respond as well to radiation as cancerous tumors which was a factor in my decision.
Where did you recieve that information? Please share any actual studies you may have supporting such a statement, I'll start by sharing one provided by the New England Journal of Medicine....
Background Stereotactic radiosurgery is the principal alternative to microsurgical resection for acoustic neuromas (vestibular schwannomas). The goals of radiosurgery are the long-term prevention of tumor growth, maintenance of neurologic function, and prevention of new neurologic deficits. Although acceptable short-term outcomes have been reported, long-term outcomes have not been well documented.
Methods We evaluated 162 consecutive patients who underwent radiosurgery for acoustic neuromas between 1987 and 1992 by means of serial imaging tests, clinical evaluations, and a survey between 5 and 10 years after the procedure. The average dose of radiation to the tumor margin was 16 Gy, and the mean transverse diameter of the tumor was 22 mm (range, 8 to 39). Resection had been performed previously in 42 patients (26 percent); in 13 patients the tumor represented a recurrence of disease after a previous total resection. Facial function was normal in 76 percent of the patients before radiosurgery, and 20 percent had useful hearing.
Results The rate of tumor control (with no resection required) was 98 percent. One hundred tumors (62 percent) became smaller, 53 (33 percent) remained unchanged in size, and 9 (6 percent) became slightly larger. Resection was performed in four patients (2 percent) within four years after radiosurgery. Normal facial function was preserved in 79 percent of the patients after five years (House–Brackmann grade 1), and normal trigeminal function was preserved in 73 percent. Fifty-one percent of the patients had no change in hearing ability. No new neurologic deficits appeared more than 28 months after radiosurgery. An outcomes questionnaire was returned by 115 patients (77 percent of the 149 patients still living). Fifty-four of these patients (47 percent) were employed at the time of radiosurgery, and 37 (69 percent) remained so. Radiosurgery was believed to have been successful by all 30 patients who had undergone surgery previously and by 81 (95 percent) of the 85 who had not. Thirty-six of the 115 patients (31 percent) described at least one complication, which resolved in 56 percent of those cases.
Conclusions Radiosurgery can provide long-term control of acoustic neuromas while preserving neurologic function.
http://content.nejm.org/cgi/content/short/339/20/1426
Additionally delayed onset of symptoms from radiation were troubling to me. I wanted to take action. I wanted to have the tumor removed. Since I had Translab for my large AN there is a very small percentage chance of reoccurance but it can never be ruled out.
So your personal choice was based on the fact that you wanted it out of your head immediately. That is one of the most valid reasons for a patient to make the decison to have surgery, in my opinion. Also, what delayed symptoms from radiation were troubling to you?
With radiation the tumor is not gone. It is still there it will always have to be monitored to be safe. My tumor is gone, and while I will have checks throughout my life to make sure it does not regrow I would not have the same confidence with radiation.
I'm not bothered at all by the fact that my own schwann cells will remain in my head, there are schwann cells surrounding all of our nerves. As long as their growth is stopped, I'm happy. When radiosurgery fails, it almost always occurs within the first three to five years, after that the tumor becomes a fibrous carcass, and other than wild speculation and unfounded fear, there is no biological reason to believe the dead scar tissue will suddenly transform back to living tissue. We are both advised to have MRI's throughout our lives, after five years in either case, it's probably more for the sake of study than regrowth.
Another study in regards to radiosurgery and long-term outcomes....
Patient Characteristics: University of Pittsburgh
Eight hundred and twenty-seven patients underwent stereotactic radiosurgery for an acoustic tumor (vestibular schwanoma) at the University of Pittsburgh over a 15-year interval. These included 765 patients with solitary tumors and 62 with NF-2. Fifty percent of tumors were left-sided and fifty percent were right-sided. Fifty percent of patients were female. The patient age range was 12 to 95 years (mean, 56 years).
A resection had been performed in 165 patients (20%). Twenty-nine patients had 2 prior resections, eight patients had 3 resections and four patients had four resections. Most patients had normal facial function (House-Brackmann grade 1)(12). The Gardner/Robertson scale was used to code hearing function (13). "Useful" hearing before radiosurgery was noted by 33% of patients.
In our last review of 45 patients with NF-2, prior resection was performed in 13 (16). Multiple resections were performed in four patients. Normal facial function before radiosurgery was present in 74%, normal trigeminal function in 75%, and useful hearing (Gardner/Robertson grades 1+2) in 31%.
Technique of Gamma Knife Radiosurgery
All patients underwent stereotactic radiosurgery using the Gamma Knife (Elekta Instruments, Atlanta GA) supplemented with local anesthesia and intravenous sedation as necessary. Children under the age of 12 years with NF-2 had radiosurgery under general anesthesia. Radiosurgery was performed with computed tomographic (CT) imaging between 1987 and 1991. Subsequent patients underwent radiosurgery using magnetic resonance imaging (MRI) after a prospective comparison study confirmed the accuracy of MR-based stereotactic targeting (14). Multiple irradiation isocenters were used to conform the radiation margin to the intracanalicular and extracanalicular tumor components (7). The 50% isodose line was used to cover the tumor margin in 696 patients with solitary tumors (88%). An initial tumor margin dose of 18-20 Gy was selected based on the initial experience from the Karolinska group in Stockholm ( 8 ). This dose was decreased to 16-18 Gy within the first two years and by 1992 was decreased further to a margin dose of 14-16 Gy. Repeated re-evaluations of the cranial nerve response prompted additional small decreases in dose in order to preserve cranial nerve function (7,15). The mean dose delivered to the margin of both non-NF-2 and NF-2 tumors was 14 Gy, although the most common prescribed margin dose at the present time is 13 Gy, and this dose has been fairly constant for the past nine years (16,17). Dose selection in individual patients was based on the factors of tumor volume, prior surgical history, hearing status, facial motor function, and patient desires. After radiosurgery, all patients received a single 40 mg dose of intravenous methylprednisolone and were discharged from hospital the next morning.
Follow-Up Evaluations
Serial imaging studies (MRI, or CT when MRI was contraindicated) were requested every six months for the first two years, annually for the next two years, and then bi-annually. Serial audiograms were obtained at 6 - 12 month intervals in patients with hearing. Contrast-enhanced imaging studies were used to define the tumor response and to identify any peri-tumoral imaging changes. Before and after radiosurgery, each tumor was measured in five separate dimensions (three extracanalicular and two intracanalicular) using a method previously reported (1). A significant imaging change using this caliper technique was defined as a difference of + 2 mm.
The Long-term Experience
We continue to evaluate a cohort of patients managed before 1992 who are a minimum of 10 years out from their procedure (n=162). This study represented results of our initial techniques (11). The majority of irradiated acoustic tumors (approximately 70%) decreased in size over time. Nine patients had tumors that increased in size and all were identified within the first three years after radiosurgery (11). Enlargement represented either true neoplastic tumor growth (n=4) or tumor death with an expansion of the tumor margins as the central portion of the tumor became necrotic. In the latter patients (n=5) subsequent imaging studies confirmed tumor volume regression. Four patients underwent resection. No further increase in tumor volume was identified in any patient with further follow-up (15). Patients returned to their routine activities immediately. In our 5 to 10 year review, three patients developed hydrocephalus and required a ventriculoperitonal shunt (11). All new or worsened post-radiosurgery deficits occurred within 28 months of radiosurgery and no patient described a treatment related problem after the third year.
http://www.acousticneuroma.neurosurgery.pitt.edu/gammaknife.html
Also one of the neurosurgeons said he would be comfortable having me look into radiation.
That's good, did you then speak with a provider of radiosurgery? What were there comments in regards to the other spot and radiosurgery aggrevating it?
Everyone deserves the best outcome and I don't think scare tactics should be used for either approach.
Agreed. But you still seem to believe a couple. And just curious, what would you consider a scare tactic that has been used to deter patients from surgery?
As for house, a free consult is one thing. Spending hours on the phone with you is another. My surgeon does not spend that much time on the phone with me.
I won't deny that's pretty cool of them. The doctors that participate on the CyberKnife support board are also very prompt in thoroughly answering all questions posed by patients all around the world.
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The importance of Doctor-Patient communication is an important factor. Don't assume that the doctor of any treatment options "knows what is important to you". It's easy to fall into "Doctor know's best" especially for us baby boomers who were raised with the above belief. You must communicate your wishes.
Take the time to sit down and explain what is important to you. Explain to your doctor your needs, your wants , your lifestyle so there's no guess work on his /her part.
This holds true for both radiation and surgical patients. Take the time to talk about your life, and all of the pluses and minuses of treatment. Open communication is an important factor. Don't leave it to guesswork
Best to all
Raydean
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Sorry at one point I had lots of information. But my surgery was in January and since then I no longer have most of the stuff I printed or even the bookmarks to sites I found interesting.
I just got out of the hosptial yesterday from what will hopefully be my final surgery. (I had a reaction to the bone paste and it needed to be removed) so I will take a look and see if I can't find the info about radiation effecting cancer cells more readily than non-cancerous cells.
Something else that made it easy for me to make my decision was that I had a large tumor that was pushing against the area that controls breathing. There was concern that if the tumor was to swell I could be in for real trouble.
Some of the things that I have now been able to attribute to my AN (i started studdering and getting very tongue tied prior to having it removed.) I would also get overheated and pass out when working out (no doctor could figure out why i was having this problem) since the AN being removed I have not had either of those problems.
I am not against radiation. the spot that is in my head was listed as possible glioma, it is in the middle of their brain. but as my an had displaced my brain stem it was not so far away. I decided to go with caution.
As for delayed side effects of radiation. many times people have reported facial paralysis, loss of hearing, vertigo and the like 5 or more years after radiation treatment. I prefered to take my consquences right up front. I had facial paralysis for a few weeks but it's back to normal or at least close enough for me not to worry about it. Since I had no usable hearing loss of hearing wasn't really a major concern for me.
I think everyone needs to really look at their situation and circumstances. I box, teach martial arts and train a lot, I felt having it removed was the correct option for me.
I read about the tumor bombs using viruses a few months ago and I think that is really exciting, but from what I read viable use in humans is still 20 years off.
The only thing I found in my search for information was a complete condemnation for the Skull Based institute's use of endoscoping surgery for removing AN's all of the doctors felt it was much to risky.
When the doctor I chose to do my surgery (apparently he is very well known) looked at me and said "If you were my best friend I would not recommend radiation for you" it made me look real hard at it. I had already made the decision for surgical removal before I saw the surgeon anyway it just confirmed it when the other doctors chose the same approach with similar time lines and such.
When one doctor (who was a partner at house at one time) said he felt comfortable looking at radiation I was a bit surprised. He also felt I could wait and watch for 6 months with little risk. (however i started getting tingling in my face a week prior to surgery (after my facial paralysis was gone I knew that it was the nerve and not just in my head.)
anyway, I had what will hopefully be my last surgery on wednesday. I was home yesterday, I even went out to eat last night. I've had my ups and downs. It would be great if people didn't need to go through any of this in the future and who knows.
I just don't think we will ever get to the point where we will totally be able to totally leave surgery behind.
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I just got out of the hosptial yesterday from what will hopefully be my final surgery. (I had a reaction to the bone paste and it needed to be removed) so I will take a look and see if I can't find the info about radiation effecting cancer cells more readily than non-cancerous cells.
I believe radiation affects cancer cells more quickly, because the cells turn over faster, but not more readily. The process is just slower with benign tumors, but still very effective.
Something else that made it easy for me to make my decision was that I had a large tumor that was pushing against the area that controls breathing.  There was concern that if the tumor was to swell I could be in for real trouble.
That's definitely a good reason. It doesn't really seem like radiation was ever really an option for you.  ÂÂ
I am not against radiation.  the spot that is in my head was listed as possible glioma,  it is in the middle of their brain.  but as my an had displaced my brain stem it was not so far away.   I decided to go with caution.
That is also understandable.
As for delayed side effects of radiation.  many times people have reported facial paralysis, loss of hearing, vertigo and the like 5 or more years after radiation treatment.
I've never heard of any reactions that far out, I've only heard of such issues up to two years after treatment. The study I referenced above touches on this issue. For a patient weighing their options, as far as this issue is concerned, I would think quite a few would take a smaller chance of nerve issues down the road, over a greater chance immediately. But that is only one factor of many that must be considered.  ÂÂ
I think everyone needs to really look at their situation and circumstances.  I box, teach martial arts and train a lot, I felt having it removed was the correct option for me.
I am also very active, I'm a father with a four year old son, and a devoted bodybuilder. I make most of the money for my family and taking a 40% pay cut on medical leave would be very difficult. Another plus of radiosurgery for me was I didn't miss a day in the gym. ÂÂ
I read about the tumor bombs using viruses a few months ago and I think that is really exciting, but from what I read viable use in humans is still 20 years off.
I don't think it's going to be that long.
Now, Delta-24-RGD is expected to start the first phase of human testing in late summer 2004, with a two-staged clinical trial of 15 patients each. One stage will offer the treatment by injection to patients with recurrent gliomas who cannot be treated with surgery. Progress will be monitored with serial diagnostic scans. In the second stage, patients with a glioma will have the therapy, followed by surgery two weeks later. The excised tumor will be examined to see if it has been damaged.
This trial is just part of an ongoing larger "platform" of research that is continually refining Delta-24-RGD therapy, says Charles Conrad, M.D., an associate professor in the Department of Neuro-Oncology who works with Fueyo, Lang and others on the "Delta team."
They have already created a second and now a third generation of the therapy, each of which is proving more adept in infecting cancer cells and disarming them. One idea is to insert genes into the viral smart bomb that will switch on chemotherapy drugs. This way, a patient could receive an inert form of a chemotherapy drug that would be non-toxic to normal cells, but would be activated by the Delta virus when it spreads in cancer cells. "We would deliver the gene that activates the chemotherapy drug only to tumor cells," says Conrad.
http://www.bio.com/realm/features.jhtml?realmId=4&cid=700007
The only thing I found in my search for information was a complete condemnation for the Skull Based institute's use of endoscoping surgery for removing AN's  all of the doctors felt it was much to risky.
Yeah, I found that as well. I was seriously considering that option, I e-mailed them and they never responded. I guess if they accidentally nick a vessel, it's over because they can't open your skull fast enough to repair it. That's what is said anyway, and they don't seem to be out there addressing that concern, so I decided against it. It was an attractive option though, minimally invasive removal with a much shorter down time. Maybe soon that method will improve and it will be a viable option.
When the doctor I chose to do my surgery (apparently he is very well known) looked at me and said "If you were my best friend I would not recommend radiation for you" it made me look real hard at it.  I had already made the decision for surgical removal before I saw the surgeon anyway it just confirmed it when the other doctors chose the same approach with similar time lines and such.
That's no surprise because he is the surgeon. Did you read my post with the survey of neurosurgeons? If not check it out, I know you've already made your decision, but it's an interesting read.
http://anausa.org/forum/index.php?topic=369.0
anyway,  I had what will hopefully be my last surgery on wednesday.  I was home yesterday,  I even went out to eat last night.  I've had my ups and downs. It would be great if people didn't need to go through any of this in the future and who knows.
I sincerely hope this is your last one as well. It's a bummer you had that reaction to the cement. Hopefully it's fixed now. :)
I just don't think we will ever get to the point where we will totally be able to totally leave surgery behind.
I pretty much meant surgery for tumor removal would disappear. With the tumor viruses and nanoshells (another very promising treatment that completely dissolves tumors in days, just google it), surgery for tumors will hopefully soon be an endangered species. As far as all surgery goes, never say never, as nanotechnology improves, many scientists believe they will one day be able to create microscopic robots that will be injected into the blood and can travel to any site in the body and go to work. Like a mini construction team. Sounds like sci-fi I know, but with the rate in which technology increases, it becomes like a snowball.
Here's an article on the subject:
Robotics is already developing for applications in life sciences and medicine. Robots can be programmed to perform routine surgical procedures. Nanobiotechnology introduces another dimension in robotics leading to the development of nanorobots also referred to as nanobots. Instead of performing procedures from outside the body, nanobots will be miniaturized for introduction into the body through the vascular system or at the end of catheters into various vessels and other cavities in the human body.
A surgical nanobot, programmed by a human surgeon, could act as an autonomous on-site surgeon inside the human body. Various functions such as searching for pathology, diagnosis and removal or correction of the lesion by nanomanipulation can be performed and coordinated by an on-board computer. Such concepts, once science fiction, are now considered to be within the realm of possibility. Nanorobots will have the capability to perform precise and refined intracellular surgery which is beyond the capability of manipulations by the human hand.
Surgical nanobots are moving closer to the mainstream. With capabilities "coordinated by an on-board computer," they almost certainly will be built through some form of molecular manufacturing.
http://crnano.typepad.com/crnblog/2005/week27/
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I actually own a gym. I haven't been able to do much lifting lately but I'm looking to really get back into shape.
As for SBI I was told to look to Korea for endoscopic surgery, apparently they are the most advanced with it.
and for my surgeons reaction to radiation for me. It was not what he said, it was how he said it. It also didn't hurt that it matched my assessment of my situation.
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I actually own a gym.  I haven't been able to do much lifting lately but I'm looking to really get back into shape.
That's cool, I wish I owned a gym. But I like the gym I go to alot, the owner is really cool and it only costs me $70 a month for me and my girlfriend with unlimited tanning (which I hardly use, but she does), as well as childcare. The closest I've ever been to owning a gym was when I had a Bowflex, lol. I can't believe I ever bought that thing. ::) I guess it was okay for cutting up, but it was no good for gaining mass. I gotta have my free weights.
As for SBI I was told to look to Korea for endoscopic surgery, apparently they are the most advanced with it.
There's also a Dr. Hae Dong Jho on the east coast, I think in PA but I'm not totally sure. He's a Korean surgeon who uses that method, so you wouldn't have to travel so far. If I was ever to need surgery in the unlikely but possible event the CyberKnife doesn't work, I will probably contact him and see what he has to say.ÂÂ
http://drjho.com/acoustic_neuroma_surgery.htm
and for my surgeons reaction to radiation for me.  It was not what he said, it was how he said it.  It also didn't hurt that it matched my assessment of my situation.
Yeah, for you, given that you had some brainstem compression and other factors, he was probably sincere. Unfortunately not everybody has all the options on their table.
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Re: Radiation
Whether the cell is malignant or benign, the radiation does not affect at that level but at the DNA cell replicating level.
This is why NF-2 type ANs are more Tx resistant. Protein 'merlin' and 'schwannomin' are ALWAYS absent or mutated in NF-2. Since the formation of ANs is exactly the same as for a spontaneous unilateral AN and NF-2 mediated AN, radiation would have greater 'potential' effectiveness on the spontaneous, one time, unilateral AN.
By some, NF-2 is considered a 'benign cancer' as it does metasticize ( shows up elsewhere ).
My largest concern for radiation is the initial 'hit' is large enough to disrupt the DNA's ability to replicate more schwann cells than necessary. Seems this is most likely with GK. Each of the 201 gamma rays goes in weakly, intersect at target AN and exit at half their original weak entrance strength. So; Theoretically, there is no need for fractionalization. So; This person feels FSR and the like are producing a 'market share' for some providers with the appearance and promise of being very 'high tech'.
Just my opinion and, of course, anyone is free to own theirs. -Russ
Russ
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It's debated whether fractionated treatments result in less chance of nerve damage, the theory is that the nerve tissue is given the opportunity to recover the night between treatments, while tumor tissue cannot. But what is very high tech, is the targeting system used by the CyberKnife. Control rates are about the same, and CyberKnife is at least equal to GK as far as error margins go, maybe more precise according to some. CyberKnife can be done in one treatment, but usually three. FSR uses five. The main choice to make between CyberKnife and GK in my opinion, is whether you want to go in for the treatment two additional days to avoid the headframe being screwed in to the skull.