Tips And Resources For New Acoustic Neuroma Patients

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.

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, their personal beliefs and experiences, and by the technology that is available to them in their institutions.

Some doctors 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 many brain tumors but have little experience treating Acoustic Neuromas and thus are not well informed on the latest research or technologies.

The reality is that the job of finding the best treatment alternative rests solely with us, in consultation with doctors, fellow patients, and other resources. Unless you personally research your alternatives, speak to multiple doctors, reach out to current and past patients, and 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 patience and persistance, but as patients, we owe it to ourselves to make sure we are getting the very best information and treatment.

Recently, a friend of my dad 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 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 me both were 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 pros and cons of the treatment alternatives in my particular case.

All of this can be confusing and stressful. Our natural inclination and desire is to place our trust in our doctors, to leave the decision in their hands. But 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 and to get clear about the facts.

Bottom line: Get consultations 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 each of them carefully and thoroughly by speaking with doctors who are trained and experienced in the different treatment modes. Don't rely on a microsurgeon to tell you about the pros and cons of radiation or vice versa. The decision is too important to rely on any single expert, regardless of his or her qualifications.

Take advantage of the free consultation offered by the House Ear Clinic. Email the doctors on the Cyberknife forum. Do not be shy about emailing respected neurosurgeons such as Dr. Chang directly for their opinions. My experience is that they are willing and eager to help when they can, will answer your questions directly and will communicate with you willingly. Frankly, they are in competition with other neurosurgeons for the privilege of treating our rare condition. (I'm not being facetious - this is absolutely true.)

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. This is extraordinary and we are all fortunate to live in a time where treatment of this condition is so successful.

What this means is that patients who do have a choice of treatments can consider additional factors when making their treatment decision. And my view is the key 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? Which treatment will result in 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, eye problems, 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:

* Study the posts on the ANA Patient Forum and call as many patients as possible (ideally with tumors of a size generally equivalent to yours) to get a personal sense of the outcomes people have experienced with surgery and radiation. To reach other patients, try the Acoustic Neuroma Association's "Willing-to-Talk" list of AN patients.

* Thoroughly consider the risks of hearing loss, facial nerve dysfunction, balance problems, headaches, eye functional issues and all other potential complicatons when deciding on a treatment. Do not turn away from the truth. Stare at it directly and then make a decision.

* 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 their first patient survey in 1998 and 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.

Bottom line: 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."

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

Tip Six: Get Treated By Doctor and Medical Facility With Extensive AN Experience

Although benign and non-life-threatening, Acoustic Neuromas are difficult to treat because they are located near sensitive brain structures. The treatment procedures, both surgery and radiotherapy, take time and practice to master, and you do not want to be one of the early patients of a young doctor in his first few years of practice.

This means insisting on being treated by a highly-experienced doctor with recent and extensive experience treating Acoustic Neuromas using the treatment mode that you have selected, whether it is surgery or radiotherapy. Note: Experience treating other brain tumors is not good enough, because Acoustic Neuromas pose very specific challenges.

This will require that you ask specific, perhaps uncomfortable, questions about how many Acoustic Neuromas a doctor has treated, how recently and the treatment outcomes. If a doctor says I have treated 100 Acoustic Neuromas, ask how many in the last year? If they say 3 or 5 or 10, explore other alternatives. You want a doctor that has treated many (perhaps 30-60) Acoustic Neuromas in the last year - not the last decade.

Similarly, seek treatment at a medical center that treats many ANs - using all treatment modalities (surgery and radiation). Experienced centers will be familiar with post-treatment symptoms and will know what you should expect and how to guide, counsel and treat you after treatment. This is critical as you will want reassuring expertise and guidance during the recovery process.

Additionally, by choosing a center that operates and radiates on a regular basis, you will have that much more assurance that you are receiving unbiased medical advice about your treatment choice. We need to keep in mind certain financial and human realities: in our system, doctors and medical centers generally make money when they treat a patient - not when they advice a patient to go elsewhere. For me, it was comforting knowing that my medical team would make money whether he operated or radiated, since both were being conducted in-house and both cost a fortune.

Bottom line: This is a serious condition, and a botched procedure can really change your life. This is no time to be timid about choosing the absolute best, most-experienced, most-well-trained and unbiased doctors out there. Period, end of story. You owe it to yourself. We all do.

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 with discernment, good judgment, and an appropriate degree of awareness.

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 aware, however, that they WILL want to operate on you. This is not the place to get balanced treatment 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.

Interviews With Dr. Steven Chang – The "Interviews" section of this site contains two extensive interviews with Dr. Chang of Stanford University addressing the subjects of choosing a treatment and Acoustic Neuroma-related symptoms. I tried to cover just about every question a new patient would want to ask an experience neurosurgeon about choosing the right treatment and finding the best medical team. Together, they are about 3.5 hrs in length and can be downloaded as MP3 files for listening on your ipod, mobile device or computer.

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.