Patient - doctor exchange #2 on CPSG - general radiosurgery questions

[Raydean]

"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

 

[sdinapoli]

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!

[jamie]

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.

[sdinapoli]

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.

[Raydean]

My above posting was in response to your reply to a previous posting regarding  The House Ear Clinic providing free surgery.   

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.   

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

[jamie]

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. 

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. 

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. 

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.   

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? 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.

[Jeff]

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

[sdinapoli]

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!

[jamie]

I only meant to ask Jamie for clarification on her statements.

His statements. Darn this unisex name! lol  

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.  

In fact, I have tumors in my neck that I may choose to have irradiated if treatment is necessary.

Hopefully it won't be.  

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.

[jamie]

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.

[Raydean]

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. 

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

[JHager]

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!) 

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

[jamie]

Or the Barrown Cyberknife and Microscurgery Center? 

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/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. 

[jamie]

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. 

[wanderer]

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.