ANA Discussion Forum
Archive => Archives => Topic started by: Kilroy1976 on November 22, 2005, 09:42:39 am
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I got diagnosed with a 16mm AN last week and am new to this group. I'll start by saying that this group is a real Godsend. You all offer so much relevant information and I thank you.
I went to the neurosurgeon for the first time yesterday and was not happy with the results. He recommended radiation, but not just any radiation, HIS radiation. I don't recall what "brand" he uses, but he spoke very poorly of the nearby Gamma Knife facility. He seemed irriatated that I kept asking questions about the disadvantages and side effects of radiation treatment and repeatedly dismissed my concerns with the contention that any side effects of radiation are minimal in comparison to the side effects of surgery.
I don't know where to turn now. If you read the House Ear Clinic's opinions, you'll discover that radiation is unstudied, experimental technology with a low sucess rate and a high probability of serious after-effects. If you read the opinions of a radiation facility such as Johns Hopkins they'll gloss over all of the side effects in one sentence and say that radiation almost always works fine. I would assume that these institutions are both top-notch in this field, so how am I supposed to decide on a procedure when "experts" are telling me two completely different things?
I am 29 years old, so I'm looking for a long-term solution that will leave as much of my hearing, facal function, etc., intact as possible. My first symptom of the AN was dizziness and my hearing seems to be fine for now. I would be very grateful for any help/advice that anyone can offer. Thank you.
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I would suggest trying to find a doctor who does both. My husband was diagnosed in Aug. and we've seen 2 doctors who specifically did both treatments. Due to the size and location - they both ruled out raidation - so he's scheduled for surgery on Feb 16.
Good luck!
dana
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If you read the House Ear Clinic's opinions, you'll discover that radiation is unstudied, experimental technology with a low sucess rate and a high probability of serious after-effects.
House does not practice radiosurgery, and the misinformation they provide in regards to it is just that. Radiaton has been used to treat tumors for a very long time, and it is far from unstudied and experimental. Quite the contrary, it has a very high success rate, above 95%, and a low probability of serious after-effects. There are many peer reviewed, published medical studies that you can refer to in the radiosurgery section of this board.
If you read the opinions of a radiation facility such as Johns Hopkins they'll gloss over all of the side effects in one sentence and say that radiation almost always works fine. I would assume that these institutions are both top-notch in this field, so how am I supposed to decide on a procedure when "experts" are telling me two completely different things?
Again, House is not "expert" in radiation, and all the claims they make on their site are deliberately misleading. There was a discussion on this board, here's a link: http://anausa.org/forum/index.php?topic=342.0 ÂÂ
John Hopkins performs both surgery and radiosurgery, as do many other maor academic facilities and they all use both. Why do you say John Hopkins is "glossing over" the side effects?
I am 29 years old, so I'm looking for a long-term solution that will leave as much of my hearing, facal function, etc., intact as possible. My first symptom of the AN was dizziness and my hearing seems to be fine for now. I would be very grateful for any help/advice that anyone can offer. Thank you.
Here's a link to a long-term study and some other info I recently posted: http://www.neurosurgery.pitt.edu/imageguided/papers/acoustic.html
The House doctors are very good surgeons, not the only good ones, but they are very skilled. However, they are not a good source of information about radiosurgery for many reasons. First and foremost radiosurgery competes for their business, it is in their interest financially that patients be deterred from radiosurgery. Also, radiation is not their area of expertise, it's not even in their field. However the several facilities that perform both, will usually recommend radiosurgery unless the tumor is too large. Both optons are equally viable, it's just a matter of what you prefer personally. I'm sure you'll make the best decision for yourself, just make sure you are weighing accurate information when you do so. :) ÂÂ
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Hi Kilroy!
Welcome!
This statement is interesting: "I went to the neurosurgeon for the first time yesterday and was not happy with the results. He recommended radiation". It is not usually the case where a NS will recommend radiation, so he does both? Mind if I ask where you are being seen?
To me, it seems reasonable to get at least an opinion from a top notch facility as HEI, MGH, JHH, Mayo Clinic, The University of Iowa, and other state medical teaching hospitals. and many others regarding just surgery and also opinion from a well experienced clinic which does radiiation only as JHH radiosurgery using FSR; One could Google 'irsa' and click 'Centers of Excellence' to find a GK clinic near you for an opinion.
You can have a free telephone consultation with a Dr at HEI if you can get them your MRI. Same as with JHH's radiosurgical unit for FSR and UPMC is a good place for a GK opinion.
Best wishes in this!
Russ russvk@netscape.com
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Hi kilroy,
Welcome to the forum. I was diagnosed with a small AN 6th months ago. This is a great site to get information. You will find that most people have very definite opinions on Radiation Vs. Surgery. Having been researching treatment options I can totally understand. When you make a decision you must feel that it is the only right choice for you. People that have already been there will defend their decision, it is human nature. That said, I will give you my thoughts. First when looking at surgery, you cannot lump all surgery together. Surgery is the only option for large tumors, so by default surgery as a whole has more side effects because larger tumors have more side effects. If you research you options you will find that surgical outcomes are highly dependant on tumor size. The smaller the tumor the better the outcome in general.
Radiation (GK and CK in particular) as a treatment looks very promising as well. The down side is that long-term studies are not available. The longest studies on AN's with GK are about 10 years and for CK about 5 (I do not consider these long term). The other problem is that there are many institutions that performs radio surgery and there is no a standard treatment protocol, even the most experienced have changed there protocols over time. There is no mistake that doctors make big money treating these tumors, that applies to both surgical and Radio surgery centers. I live in Denver and the local CK center advertises on TV for their center" If you have a tumor come see us". You will see a surgical bias on surgical web sites and a Radio surgery bias on radio surgery web sites. Do your research and make a decision you can live with.
John
4mm x4mm AN right side
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Kilroy,
I would agree with 90% of John's comments ( targa72e) but have to take exception with the perpetuation of this "no long term study" perception. GK was first introduced in 1968 in Sweden and unless I do my math wrong that constitutes about 37 years. to quote the clincal trials web site
Since 1968, non-invasive Gamma Knife radiosurgery for the treatment of brain tumors and vascular malformations has enjoyed incredible success. More than 65,000 patients have been safely treated with focused gamma rays worldwide.
it was introduced to the US in 1987 at the University of Pittsburgh
The Center for Image-Guided Neurosurgery at the University of Pittsburgh Medical Center installed the first North American Gamma Knife in 1987 and subsequently introduced and pioneered each succeeding generation of technological improvement.During UPMC's first 18 years of experience, more than 7,000 patients have undergone radiosurgery in the department's Gamma Knife units
from the Yale New Haven web site (1999)
The track record of the gamma knife over the past 30 years has demonstrated that it remains the gold standard for stereotactic radiosurgery, with more than 100,000 patients treated worldwide
from the university of Virginia
The first vestibular schwannomas treated with the gamma knife were by Leksell and Steiner in 1969. Since then more than 21,272 have been treated around the world through June 2003.
It is is simply not correct to state that Radiosurgery is some new treatment that has been studied less than 10 years. It is true that the studies on CK are short term because the machine was developed in 1998. However, it is simply a more technologicaly advanced machine in terms of targeting and accuracy than GK, but the history of radiosurgery established by GK still applies to CK. Most people don't appreciate the fact that modern microsurgical techniques are not much more than 15 years old.
I think when looking at study lengths it is also important to realize that they will probably never extend much past 30-40 years in the future anyway in light of the fact that the majority of us get this when we're 40 plus years old and probably live til around 80 on average.
Mark
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Kilroy,
As you can see most of the people here have an opinion. The ones who have a strong opinion about one or the other, are the ones who had that type of treatment and things came out okay. You have to live with your decision so you need to do the studying yourself. Take their advice but talk to everyone you can. Mark and Russ have a great deal of knowledge about ANs. They won't give you an opinion but they will give you facts from studies they have read.
There are complications that could arise with both and you can beat this to death with worry. My suggestion to you is follow your gut feeling after you have researched. I finally did and things came out great for my mother.
I wish you the best of luck.
Mary
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Thank you all very much for your responses. I wish my soon-to-be-out-of-the-loop neurosurgeon had given me such useful information. Do any of you know anything about linear accelerator treatments? If I opt for radiation, it will likely be at either the Mayo Clinic in Jacksonville or Shands at the University of FL, and both seem to use the LINAC.
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Kilroy,
GK uses cobalt to create gamma rays whereas linear accelerators ( linac) generate x-rays. Most new technology machines employ linac. I'm not sure how much difference it makes to the patient but this is from the CK society web site
Unlike the radioactive cobalt-based Gamma Knife, linac-based systems use X-ray beams generated from a linear accelerator. As a result, these devices do not require or generate any radioactive material.
A complete discussion of the various systems is also on that web site
Mark
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Hi Kilroy
Here's a Shands link: http://radsurg.ufl.edu/patient/linacscalpel.html
Another poster mentioned what difference a cobalt source gamma ray as produced by GK versus X-Rays ( Like a microwave oven ) produced by a linear accelerator might be. My understanding is the two types radiation are very close to each other on the spectrum so there is in actually little difference in effect, but in protocol.
Seems a linear accelerator is used more often in fractionated radiotherapy but fractionated GK is used on occassion. Both have several years usage to draw results and stats from.
Rochester Mayo uses GK. I see a NS who does both microsurgery and GK and quite a few of both Tx types depending on what he thinks will work the best for the individual. Unfortunately, not all practioners are dual minded and rather exhibit bias.
Depending on the tumor size and location, I think you will find comparative facial and auditory nerve outcomes with midfossa vs. radiation. It's just with radiation, it takes longer to see result and that result may be merely to stop tumor growth ( Goal is to stop DNAs ability to replicate tumor cells ), hence "radiation therapy". GK still enjoys the title "surgery". 201 gamma rays are shot through a collameter from various angles to intersect at target AN. They go in weak individually and come out half that strength.
Cochlear ciliary hair can be damaged by radiation absorption so there 'may' be a slight reduction in hearing. Also, it has been said by some NSs that a failed irradiation attempt makes later surgery more difficult. Seems this is mostly untrue in the hands of very skilled surgeons such as at HEI and other good facilities.
Have a nice Thanksgiving!
Russ
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Hi Kilroy,
You never said in your original post here what exactly this neurosurgeon was recommending in terms of radiation . You only said he seemed to be thumbs down with GK.... so I wonder what type of radiation he DID recommend?
After reading the posted replies here I simply want to add that fsr is known as FSRS (fractionated stereotactic radio-surgery) so it too still enjoys the name of surgery.....
Best wishes in your search for a decision,
Sincerely,
Windsong
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Hello,
I had a 1.7cm AN removed at House Ear Institue on August 23 of this year..I live in Florida and most of the doctors that I went to here didn't recommend gamma knife because I am 26 years old and said I still had a long life ahead of me and felt I should have surgery and have it removed...I found the AN through an MRI because I had a sudden hear loss but luckily at House, my hearing was preserved, my facial nerves are great, and the dryness in my eyes went away after a couple of weeks with eye drops.....my balance is getting a lot better with time and I started working again part time 2 weeks ago......I wish you the best just get a couple of different opinions and whoever you feel most comfortable with.....take care........hope all goes well...jessica
1.7cm removed at House Ear Institue
Dr. De La Cruz and Dr. Hitselberger
August 23, 2005
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Well friends, it turns out that my concerns regarding treatment options were unfounded and I have wasted my time and yours . In order to get referred to a competent doctor, my insurance will have to review my case for some several weeks. At the end of that time, I fully trust that they will identify the doctor and facility best equipped to meet my specific needs. It's such a relief to know that my fate lies in such loving hands and that I need not worry/ponder/pray over what treatment to choose.
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Hi Kilroy!
Please touch base with us b-4 treatment, ok? Even though your ins. co. may choose a treating center for you, it will be to their financial advantage and not necessarily toward your best interests. AN Tx can be a life altering event positive or negative. Of course, one should always pursue the positive and what gives the best chance of success.
I've heard of ins. cos. working out of contract areas if there is pre agreement with the facility.
Best wishes in this and please, stay open minded in your Tx options no matter what just one web site statement is. Facilities and Drs. get very passionate about their territory and there's money to be made for them. Pts.also get very passionate about what has worked for them or what is interesting to them. Money aside, what works for you is upmost!!
Russ
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agreed even the most biased doctor still wants the best possible outcome they can produce. This is not true of insurance companies.
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Kilroy,
How nice of our insurance companies to be so interested in our well being and quality of life. I am sure mine had my best interest at stake when I had to cancel my surgery with HEI. I was given the option to go with a couple of local surgeons that have the compassion of a Bull Moose. However, it has been a blessing to me because I had not considered radiation at all.
After interviewing several local surgical patients and not finding one that came out of it as I would wish to be post surgery I started interviewing radiation patients. All were very upbeat and open with why they chose such a treatment. One lady had a failure and said she did not regret trying it. She later had surgery without facial problems. I went to a radiation oncologist who did not try to push me into anything. He took my MRI's before a panel of neuro surgeons and oncologist and a neurotologist that does both. It came back as I could have either GK or CK or surgery only if I felt I really wanted it. At about that time I got on a site called Cyberknife Patient Support. I started talking to a local radiation oncologist and set up an appointment with him. What a difference from the Neurotologist's I had been to. He did not see a thing wrong with surgery and explained the difference in CK and GK. He does both. Again my films were reviewed by a panel and I was a candidate for either GK or CK surgery was not reccomended.
When I went back to my neuro and told him I was going to have CK. His eyes turned cold and he said I am sure you will be just fine. We will talk about it just once more then I don't want to ever discuss it again. He simply said it is not without risk or side effects. It fails 10% of the time (not the same figures I had found). How will you ever know if it is malignent ? I ask him if he had ever had one that was cancer and he said no. The oncologist says no way is it cancer, I think the oncologist would know best. This man said he could do my surgery with out a neurosurgeon if I wanted. Yikes, why would I want that?
Kilroy, please get on the cyberknife patient support site and ask all the questions you want, the doctors will get back with you quickly. Dr, Chang does surgery and CK. Dr.Medbery does both CK and GK. A wealth of information is there for the asking.
Sandy
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Kilroy
I won't add too much to this already long debate other than to say that I understand HEI microsurgeons and Stanford radiosurgeons often accept whatever the insurance comapny would have paid had you gone in state or to their recommended doctors. I'm supposeduly "fully covered" to have whatever I like wherever I like with whomever I like. One of the bills from my treatment was $40,000. My insurance company offered them 20% of this and they accepted! So if you're particularly wedded to a certain doctor or form of treatment ask them if they'll accept what the insurance company offes them. You may be pleasantly surprised.
Finally the only thing I'll add to the GK/CK debate is to say that GK uses cobalt radiation usually administered over one treamtent. Stunningly deadly to the tumor but can have a spray effect sometimes damaging healthy stissue. Also is a little invasive as requires the use of a frame bolted to the skull. CK uses x-rays (but quite different from a microwave) administered over a few days. Their theory is that healthy tissue is given a chance to recover between treatments. Because the computer programs the radiation to avoid healthy tissue (or give less of a dose) the potential for healthy tissue damage is reduced. Both CK and GK have excellent rsesults at tumor necrosis and hearing preservation.
Good luck
CC
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Both of my local doctors referred me to Shands at the University of Florida, and insurance caved in. I'm having radiosurgery (linac) there, either next Monday or Tuesday. It's good to have a date and I have confidence in the doctors at Shands, both because they have an excellent reputation in these parts and because they did an outstanding job on a tumor my sister had.
I want to offer my sincerest thanks to everyone in this forum. I can't express how helpful you have been to me and how grateful I am that there are so many good people out there. God bless you all.
-Kyle
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Kilroy, I think I understand your situation because I am also confused about which treatment if that time comes.I have 4x5 mm AN and presented with dizziness (or vertigo?) also.I am in the wait and see mode for now.It sounds like you need to get another opinion.Red flag to me is when a doc says there is only one way to go.The doc I saw was open to all of the options, but he said Gamma Knife could be the one since he has seen good results, especially with the smaller tumors.But, I do find myself going back and forth, and I know this is a big decision to make so I think it is best to keep checking it out.I will probably get a second opinion if it comes the time.But, gosh is it hard to figure it all out especially since I'm just in the beginning stage.Also know that I might not ever need treatment, but still it will always be in the back of my mind.Feel free to email me-- nscooper31@att.net.Best of luck to you and to all of us who are confused.And I admire all of you have been through treatment one way or another.