Lost, totally lost

[Kilroy1976]

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.

[dgrummer]

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

[jamie]

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  

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.  

[russ]

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

[targa72e]

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

[Mark]

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

[Mary]

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

[Kilroy1976]

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.

[Mark]

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

[russ]

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

[Windsong]

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

[Jessie127]

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

[Kilroy1976]

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.

[russ]

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

[wanderer]

agreed even the most biased doctor still wants the best possible outcome they can produce.    This is not true of insurance companies.