Resources And Tips For Those Diagnosed With Acoustic Neuroma

In this section, I have tried to condense the lessons of my personal experience into a few key tips and suggestions for persons diagnosed with an Acoustic Neuroma. I also have listed a few key internet resources available to persons investigating their treatment options.

I plan to update this page regularly and would appreciate suggestions you may have, such as resources that you have found particularly helpful in your process or tips you want to share with new patients. Please email me any time.

Key Tips And Suggestions for Acoustic Neuroma Patients

Tip One: Take Control of Your Treatment

As Acoustic Neuroma patients, we need to be aware of the realities of the practice of neurosurgery. The fact is that doctors have biases shaped by their training, personal beliefs and experiences and by the technology that is available to them in their institutions. Some doctors will believe surgery should always be the first choice. Others believe radiotherapy is easily the better approach when it is an option. Among radiotherapy advocates, disagreements exist about the technologies used to deliver the radiation. Furthermore, Acoustic Neuromas are rare, and your average doctor (even the average neurologist) may not be fully informed about the latest research and all the treatment alternatives. Many neurosurgeons treat lots of brain tumors but have treated just a few Acoustic Neuromas. The bottom line is the job of finding the best treatment rests with US, with the consultation and support of our doctors, fellow patients, and other resources.

Unless you personally research your alternatices, speak to multiple doctors, reach out to current and past patients, use internet resources at your disposal, there is a serious risk that you will not receive full and complete information about the treatment alternatives available to you. Navigating this terrain does require some patience and persistance, but as patients, we owe it to ourselves to make sure we are getting the very best information and treatment.

Recently, my dad's friend was diagnosed with a small AN (less than 1 cm). By the time he called me, his brain surgery had already been scheduled. When I asked if he had considered other treatment options, he said no, the other options had not been mentioned or discussed with him. This is just not acceptable and is an example of what can go wrong from too much deference to doctors.

Bottom line: the responsibility for obtaining complete and accurate information about treatment alternatives rests with us, the patients. We need to question our doctors vigorously, seek out multiple opinions, speak with the most experienced specialists, and seek and obtain the answers to our questions. We, together with our friends and families, are our best medical advocates.

Tip Two: Get Multiple Medical Opinions From Specialists With Different Backgrounds

There is too much complexity and disagreement in the Acoustic Neuroma treatment decision to rely on the opinion of just one doctor (or even just one medical institution). In my case alone, I had elite doctors advocating microsurgery, Gamma Knife and Cyberknife. The first two neurosurgeons with whom I consulted (both of whom were trained as surgeons and one of whom is an internationally-reknowned brain surgeon) told me I needed surgery. Others (who were trained in both surgery and radiation) told surgery and radiation were both reasonable alternatives in my case. Some doctors said either Gamma Knife or Cyberknife would be OK. Others said Gamma Knife was the way to go because Cyberknife was still too new. As difficult as it was, working through all of these opinions gave me a full and clear picture of the various pros and cons of the treatment alternatives in my particular case.

All of this can be so confusing and stressful. Our natural inclination and desire is to be able to place your trust in your doctors. But the first we need to choose the right doctors to place our trust in. And to do that, it is really important to get multiple opinions and perspectives.

Bottom line: Try to get input from as many doctors as possible. If there are multiple treatment options available to you (i.e., surgery and radiation), take the time to investigate them by speaking with doctors who are trained and experienced in the different treatment modes. Don't rely solely on a microsurgeon to tell you about the pros and cons of radiation and vice versa. The decision is too important to rely on any single expert, regardless of qualifications.

Take advantage of the free consultation offered by the House Ear Clinic. Do not be shy about emailing respected neurosurgeons such as Dr. Chang directly for their opinions. Email the doctors on the Cyberknife forum. My experience is that they are willing and eager to help when they can. Frankly, they are in competition with other neurosurgeons for the privilege of treating your rare condition.

Tip Three: Focus Hard On Quality of Life Issues

Obviously, the paramount concern when it comes to treating an AN is ensuring that it is killed or removed. Fortunately, with both microsurgery and radiation, this outcome is achieved in the vast majority of cases. Generally speaking, whether you radiate or operate, the tumor will be "controlled" (i.e., no subsequent treatment will be required) in 95-99% of cases, give or take a few percentage points.

What this means is patients lucky enough to have a choice of treatments have the luxury of considering other factors when making a decision. And my view is, the overall factor to keep first and foremost in mind is your quality of life after treatment. Which treatment will have fewer permanent consequences? Which treatment is most likely to result in fewer lingering symptoms and a better post-treatment quality of life?

Yes, single-sided deafness is not that bad, but hearing with both ears is better. Facial nerve damage is not the end of the world, but living with it is not easy either. Balance problems, headaches, tinnitus, hearing issues, facial issues, ability to work and play – these are the measures by which you will judge the "success" of your treatment on a day-to-day and hour-to-hour basis after your treatment.

Some suggestions for evaluating the effect of a treatment on your quality of life:

* Consider hearing and especially facial nerve function when deciding on a treatment.

* Search pubmed.com for medical studies that compare the post-treatment quality of life of radiatherapy and surgery patients. The studies I found are here, here and here. Hopefully, the medical community will continue to publish studies in this important area.

* Study the ANA Patient Symptom Survey. The ANA published a survery in 1998 and has published an updated survey in late 2008.

Simply put, the real measure of a successful treatment is our quality of life afterwards. Do everything in your power to choose a treatment that will give you the most active and vigorous possible life afterwards.

Tip Four: If You Have Balance Issues, Investigate Them Thoroughly

Balance issues are quite unpleasant and can seriously impact quality of life. If you have issues with balance prior to treatment, make sure to investigate them thoroughly. Take any balance tests recommended by your physicians (or, if they haven't recommended any, suggest whether they should) and measure your treatment options after consideration of the consequences to your balance-related symptoms. Question your doctors vigorously about how treatments will impact your balance.

There are plenty of patients on the ANA Patient Forum and doctors on the Cyberknife Forum that can offer insight and knowledge.

It is important to look behind the claims of surgeons or radiotherapists who tell you balance issues will resolve themselves a few weeks after treatment. It is not that simple. From what I have seen, both surgery and radiation patients can experience lingering balance issues for some time after treatment, and perhaps indefinitely. I personally dealt with lingering balance issues for a little more than a year after treatment. I don't think there is an easy answer to the balance questions, but it is important to understand them thoroughly when deciding on your treatment.

Tip Five: Speak Up, Reach Out, Connect

As with any major life decision, talking to trusted friends and loved ones will help immeasurably. Apart from the emotional support we all need, talking to people about your treatment research and decision-making process will generally make the process smoother and result in a better decision.

In my case, as a result of talking to friends, I was put in touch with a great doctor who consulted with me informally along my journey. I used friends and family as a sounding board to weigh the pros and cons of my treatment decisions. Even people I barely knew offered helpful advice, wisdom and suggestions based on their personal experiences. When I was ready to make a choice, it was a huge help to hear my trusted friends say, "I think that is the right decision for you."

Rely on other people. Talk to them. Lean on them. Listen to their advice and suggestions. Reach out to others. It will help tremendously.

Resources for the Newly Diagnosed

Following are a few internet resources that a new patient might find useful. Please note that none of these organizations or websites has "endorsed" my website, nor I am "endorsing" them by including them here. My philosophy is, the more research, the better, and these are a few places where you might gather more information. Some sites are pro-surgery (House); others pro-radiation (Pittsburgh). As you gain experience doing research, you will begin to notice these biases more and more. So read it all with a healthy appreciation of the different perspectives being offered and approach everything you read with judgment, caution and an appropriate degree of skepticism.

Acoustic Neuroma Association – Patient support organization with helpful literature and a "Willing To Talk" list of former patients who have volunteered to be contacted by new patients. Read the results of the ANA 2008 patient survery here.

Acoustic Neuroma Association Patient Forum – A superb resource. Patients post questions of all kinds and at all stages of the AN journey, from diagnoses to pre-treatment to post-treatment. Post as many questions as possible! And read through the past posts. It will be well worth your while.

Cyberknife Patient Support Group – Another excellent resource. Experienced neurosurgeons will respond (on a voluntary basis) to questions about Cyberknife and radiotherapy generally. Again, post any you have questions free and read through previous posts as well as archived posts.

House Ear Clinic – I believe House operates on more ANs than any other center in the country. They offer a free consultation (including MRI review) to any patient with an Acoustic Neuroma. Be warned, however, that they WILL want to operate on you. This is not the place to get balanced information about Cyberknife or Gamma Knife or any other radiation alternative.

University of Pittsburgh - Department of Neurological Surgery – Fairly comprehensive source of AN treatment information, particularly with respect to radiotherapy.

Pubmed.com – Free public database of abstracts of medical research. A superb resource if you are willing to read through the dense, technical abstracts. Try searching "Gamma Knife" & "Acoustic Neuroma" or "Acoustic Neuroma" & Quality of Life" in the search box. It can be tough reading through the abstracts (emotionally as well as intellectually) but it's also an unmediated glimpse into what our doctors are reading to keep up to speed on the latest AN research.

Acoustic Neuroma Patient Archive – This is a compilation of web-based resources put together by Acoustic Neuroma patients. Much of the material on the site is becoming outdated, so, as with all resources, keep that in mind as you review the site.

Please contact me with additional resources or suggestions.