Succesful Acoustic Neuroma treatments
and your Quality of Life
Most new patients assume that successful AN treatment means a quick recovery, no further complications, no side effects, no regrowth - whether it's microsurgery or radiosurgery. Unfortunately, this is not the case. To understand why, we need to know that every medical procedure has "goals". And we need to realize that for doctors, a medical procedure is considered successful as long as it meets its goals.
For treating ANs, goals vary from doctor to doctor and from patient to patient. Even for the same patient, these goals can be quite different depending on the skill of the individual doctor and their type of treatment. Some of the various possible goals for AN treatments are:
1) partial removal of the tumor
2) total removal of the tumor
3) total removal with preservation of both facial and hearing nerves
4) stopping the tumor's growth while affecting no change in the patient's quality of life
Goals change as medicine advances. Decades ago, before the invention of microsurgery, the goal of AN surgery was to remove most of the tumor, without killing the patient (goal 1). Nowadays, goal 2 is still common, where the treatment is considered successful even it leaves one paralyzed in the face, depressed and unable to work (this is the extreme end of AN treatment complications, and most patients are not disabled by AN treatments).
The best surgeons typically strive for goal 3. However, even patients with goal 3 can experience a significant drop in their quality of life after "successful treatment" as a result of such complications as:
extreme fatigue, problems with memory or concentration, dizziness, and persistent headaches.
If preserving one's quality of life is not the goal of AN surgery, it will not be included in the measure of surgery's success. That is, unless the overall quality of life was explicitly stated beforehand as a goal, the treatment will be considered successful even if these complications are present. Here is a story about one such "successful" surgery:
I'd just like to ask [the surgeons] how you can in good conscience continue to perform the retrosigmoid surgical approach on AN patients given the devastating post-op headaches that so many of us face following that surgery in particular. I suffer constantly from the pain... sometimes more, sometimes less, but it is unrelenting. The impact that chronic and frequently debilitating pain has had on my life cannot be measured, and is routinely discounted by the majority of doctors I have seen. My surgeons were fabulous by standard measures of success -- the tumor was fully removed, my facial nerve preserved, and my hearing only slightly affected. But I can tell you that I would gladly trade my hearing or my facial nerve (and I did lose that for a month, so I know somewhat of what I speak) in a heartbeat in order to be painfree... I am still glad I had the surgery but if I had been more aware of the strong possibility of headaches and how dramatically they would affect my quality of life, I would have NEVER agreed to the particular surgical approach taken.
Here are some more. This is something to keep in mind when reading published statements like:
The vast majority of AN microsurgeries are very successful.
The "quality-of-life" complications are much harder to measure objectively than is the functioning of the nerves, which might explain why they tend to be ignored by the medical community. However, they are quite common. In one study, it was found that the average AN patient experiences a signigicant drop in their quality of life as a result of surgery, down to an average of 645 of a possible 900 points; here is the article. ANA's 1998 member survey also reveals a very discouraging picture for the quality of life after AN surgery, here is our report. This is also confirmed by Dr. Steiner is his letter to the American J. of Oncology, 1996 (vol 17, no X):
Because of the frequent unfavorable outcome regarding the quality of life, a large fraction of patients who went through microsurgery for extirpation of vestibular schwannomas [ANs] are profoundly dissatisfied.
[It is important to note that dissatisfaction and disability do not equate with unhappiness. If the patient can make the necessary adjustments to their lifestyle to account for the limitations imposed by their problems, they can find that life is still full of meaning and satisfaction, though it will be different from before].
The following study confirms that hearing and facial nerves, which is the measure usually used by surgeons to assess their success rates, are far from giving us the full picture on how AN surgeory affects patients [italics ours]:
Impairments, disabilities, and handicaps after acoustic neuroma surgery,
Jounal of Clin. Otolaryngol., Feb 2000, vol. 25(1):62-5
by Bateman N; Nikolopoulos TP; Robinson K; O'Donoghue GM
Department of Otorhinolaryngology/Head and Neck Surgery, University Hospital, Queen's Medical Centre, Nottingham, UK.
ABSTRACT: The measurement of a patient's health-related quality of life following acoustic neuroma surgery is important because the surgery itself can impose significant symptoms postoperatively. This study describes the most common problems experienced by the patients, using an open-ended questionnaire mailed to a series of 70 patients who had undergone acoustic neuroma surgery. Patient responses were classified by impairment, disability and handicap, according to the World Health Organization (WHO) classification. Results showed that this group of patients had a wide variety of symptoms and concerns, and particularly highlighted the relative importance of visual (49% of the patients) and psychosocial problems (34% of the patients) associated with surgery in contrast to tinnitus that seemed to be of minor importance...
It is nevertheless hard to find a surgeon who will include preserving the patient's quality of life as a goal. The latest ANA literature confirms this:
the goal of AN surgery is to preserve life and to leave unchanged as much nerve and other involved tissue as possible
There is good news, however. Goal 4 is a common one among radiosurgeons, who consider your overall quality of life post-treatment, including all possible complications. Radiosurgical success stories are patients who go on with their life just as before...
It used to be that if the patient came out of of surgery alive, that was already a success - how the times have changed! Nowadays, AN patients can afford to have very high expectations, and they should look for a team that strives to preserve their quality of life as a goal of their treatment.©
Last Edited: Friday, November 01, 2002