Acoustic Neuroma Association:
how well does it serve us patients?


Comments on the ANA patient literature

All ANA literature, whether printed or published on their web site, is under the control of the ANA medical advisory board, composed of a dozen MDs.  The information presented at ANA bi-annual symposia is also chosen under their supervision. It is believed they are involved in setting many of the ANA's policies as well. Since this board is dominated by surgeons, it is not surprizing that the ANA literature, as well as their symposia, are biased towards surgery. 

Here is a patient's letter to the ANA, analyzing inaccuracies in the ANA literature. (italics added)

Lois V. Lowery, Executive Director
Acoustic Neuroma Association
P.O.Box 12402, Atlanta, GA 30355

Dear Ms. Lowery:

I am a recently diagnosed and treated AN patient, and would like to thank the ANA for recently sending me an information packet in the mail. I would like to offer some constructive criticism of the material you sent me.

Prior to receiving the packet, I had spent many hours analyzing information on AN on the internet, reading information supplied from several major centers by medical professionals, as well as a large number of accounts of patient experiences. I had come to the personal decision that Fractionated Stereotactic Radiation (FSR) was my choice for active treatment. This opinion is shared by a significant number of patients and medical professionals. This treatment is offered as a preferred treatment by several of the most well-known hospitals in the USA.

I was somewhat dismayed when I received the information packet to find that FSR was not mentioned in any of the three booklets which discussed treatment of AN. "Some Answers About ...Acoustic Neuroma" and "Diagnosis: Acoustic Neuroma What Next?" convey a quite negative tone regarding radiation treatment in general, and are not likely encourage patients to consider this alternative. "Acoustic Neuroma" does discuss single-dose radiosurgery in a less negative manner, but does not mention FSR at all.

I believe that in order to best serve the AN community, these booklets need to be updated and revised to reflect more accurately the situation existing at major treatment centers throughout the USA and to reflect patients' experience. As the national association, with the considerable authority likely to be gained by that position, I believe that statements made by the ANA should reflect in a balanced manner the whole spectrum of treatments available, providing the patient with as much information as possible to enable an intelligent informed
choice.

I will comment in more detail about the wording in these booklets.

  1. In Some Answers About ... Acoustic Neuroma under "What Can Be Done About It?", the bald statement is made: "Surgery is the best treatment for most patients." I believe that the number of patients and medical professionals who would disagree with this statement is sufficiently large that the ANA is not justified in making this blanket statement
  2. In the concluding paragraph of the same section, no mention is made of the relative frequency and severity of side-effects resulting from the different treatment options. The final sentence, "Although radiosurgery is a more attractive short-term option, the long-term cure or control rate appears more certain with microsurgery," while it may even be technically correct, implies a greater difference between the treatment options than the reported data supports. It is in effect a misleading statement.
  3. In Diagnosis: Acoustic Neuroma What Next? under the section "Radiation Therapy", the opening sentence reads "If the patient is not willing to undergo surgery or if his/her medical health is poor, radiation may be considered." I believe many readers will receive from this sentence an impression that no sensible healthy person would choose radiosurgery, a position which is not in line with the reality in the world of patients and medical professionals.
  4. The second sentence of the same section reads "While radiation therapy may retard tumor growth, long-term results are not yet available". This is certainly not true in the sweeping generalization as presented, as single-dose Gamma Knife data are available over an extended period.
  5. The third sentence reads "There are also complications associated with this treatment." This is a true statement, but it would be much more useful if comparison was made with the complications to be expected after microsurgery.
  6. In Acoustic Neuroma, in the section "Stereotactic Radiation Therapy (Radiosurgery)" the implication is that all radiosurgery is done by single-dose treatment, without mention of FSR.
  7. The 5th paragraph reads "Symptoms such as dizziness and disturbances of balance are improved earlier after microsurgical treatment than after radiosurgical treatment because the effects of radiosurgical treatment may require up to eighteen months. Many patients have some residual dizziness and disturbed balance after either radiosurgical of microsurgical treatment, but this is commonly less after microsurgical treatment." I do not believe that this paragraph presents a balanced and accurate picture of the relative problems to be expected with balance between treatment by microsurgery and FSR.
  8. The next to last paragraph in this section reiterates the 1991 NIH Consensus statement on AN, which appears to be seriously out of date. I believe the ANA could better serve the ANA community be working to update and broaden the NIH position, rather than reiterating it.
  9. The final paragraph begins "Microsurgical removal remains the treatment of choice for acoustic neuromas." As I have stated above, I do not believe this is an accurate representation of the reality prevailing in the world of patients and medical professionals. It may be that numerically more do choose microsurgery than radiosurgery, but the phrasing "remains the treatment of choice" implies an inferiority of radiosurgical treatment that is not justified.
  10. The last sentence reads "An experienced microsurgeon, operating on tumors in the radiosurgery size range, can produce results comparable to radiosurgery and the long-term tumor cure or control rate appears more certain with microsurgery." If the frequency and severity of side-effects is included, the comparison between microsurgery and FSR may dictate a revision of this statement.

I was thrilled when I discovered that there was a national association for AN, that there was a national source of support and information, somewhere to turn to in the confusion following diagnosis out of the blue. It's certainly nice to know that you are not alone with your problem.

Perhaps it is inevitable in this time of rapid development of treatment options and the instant communication' made available by the internet, that a national association like the ANA will lag behind but I would like to see the ANA in the forefront, and offer the above suggestions in this spirit.

Sincerely,

John Armitage, Ph.D.
February 23, 1999


Our wish list for the ANA

  1. Present an unbiased discussion of radiosurgery at the 2003 ANA Symposium
  2. Sponsor an investigation of the connection between cognitive issues and AN quality-of-life outcomes
  3. Fight for disclosure in ANs
  4. Fight for a new NIH consensus statement on ANs
  5. Set up a legal defense fund to help patients with insurance coverage and with their legal rights.

Last Edited: Tuesday, November 19, 2002