What are the W&W statistics?

[TOM101]

Has anyone tried to compile statistics on the folks in watch and wait ?
Like a chart showing when they found out the had an AN, with updates by year an any growth etc.?
The studies i have seen on the web show in one case 66% no growth and 33% small growth over a 5 year period. Others have about the same outcome. I understand the people who develope symptoms or large AN's getting treatment but I wonder if this is an overkill for many of the people who develope this problem.

As an example: I am very health otherwise but thru heredity I managed to get lucky again and was diagnosed with osteoporosis.
THE DR gave me a prescription for Fosamax. I checked out the statistics on the drugs. It seem like 2 out of 100 osteoporosis patients get broken hips and if you take the drugs only 1, thats a 100% improvement. Give me a break. And the drug company tells you not to use the drug for more than 5 years, why because it makes your bones brittle. But, I will bet 99% of people are taking the drugs.

Can we find out if too much is being made of this problem? Are they just trying and succeeding in scaring us into surgery or radiation?
I was told, but would like to know from AN patients, that you almost always get some problem from surgery? even if it goes away, that's one more problem than I have now. Help! Those of you with knowledge of this problem, what do you think?

[TJ]

I am not a doctor but I do not think it is an overkill as you state.  If you are lucky and find the AN while it is small you have many more options for treatment.  Yes there are some that seem to never grow, but I would guess that there are more that do grow.  And everytime that it grows it is taking some function away that you will never get back.  Weather it is hearing, balance, facial nerve damage etc.  If you can treat if early you can avoid many problems after treatment.

It would seem that most patients that have AN's are pretty willing to be in "watch and wait" as long as they do not have symptoms.  But as soon as that sucker starts to grow to a point of losing some function(which again they do not get back) they are ready to have it taken care of.  If you have an AN that is growing at some point that you choose there will have to be treatment.

Just my opinion

TJ

[PaulW]

There are so many opinions on AN.
It is true most AN's show no or limited growth, and many medical professionals consider microsurgery or radiation as overkill.

However whether your AN is treated or not hearing loss and balance problems are the norm in W&W even if your AN is NOT growing.

I did not want to lose my hearing, which was deteriorating rapidly.
My specialist recommended Watch and Wait.
I chose Cyberknife, and 4 months after treatment my hearing has actually improved to near normal.

Here are some Pubmed articles indicating that hearing loss is likely even if your AN shows no growth.

http://www.ncbi.nlm.nih.gov/pubmed/20502379
http://www.ncbi.nlm.nih.gov/pubmed/10865479
http://www.ncbi.nlm.nih.gov/pubmed/19730147
http://www.ncbi.nlm.nih.gov/pubmed/18559034
http://www.ncbi.nlm.nih.gov/pubmed/15373864

Before Treatment everytime I had a tinnitus attack, a dizzy spell, or my hearing deteriorated, it was a negative experience, and created that uncertainty of having an AN.
Tinnitus was getting worse and hearing was deteriorating fast.

Now post treatment when I get a tinnitus attack or my hearing goes a bit whacko, or I stumble in the dark... do I care... NO.
Do I care if I eventually go deaf in one ear... not really.
I have done all I can, whatever happens, happens.

While early intervention may well be medically controversial, as a patient you have no certanty, and that gets a little wearing after a while.
Early intervention has allowed me to get on with my life, with my hearing intact.

I should say that watch and wait is still a very valid protocol, and depending on your AN may still be the best form of treatment.
A lot depends on your age, symtoms, size and position of your AN, and your expectations pre and post treatment.
If you are totally deaf in one ear already, your balance nerve is gone, and your AN is small... yes why not Watch & Wait.
If you are over 75... your AN probably wont grow anyway.. so Watch & Wait.

Please do your own research. I am not a doctor

[Jim Scott]

Can we find out if too much is being made of this problem? Are they just trying and succeeding in scaring us into surgery or radiation?

Since you asked.....You are basically questioning whether doctors are manipulating AN patients into undergoing unnecessary treatment, be it surgery or radiation.  My answer is no.  I would assume that the reason most ANs are found is due to the patient requiring an MRI scan for the purpose of ascertaining the cause of his or her symptoms, which standard medical tests have heretofore failed to discover.  Hence, the patient already has symptoms and once the tumor is found, they are advised to treat it (surgery or radiation) to help alleviate their symptoms.  If the patient is asymptomatic or close to it and the AN is tiny, many doctors will advise observation via annual MRI scans, better known here as 'watch and wait'.  However, the statistics on non-growing acoustic neuromas show that only a very small percentage permanently cease their growth.  The tumor may lie dormant for some years, then experience a growth 'spurt'.      

I was told, but would like to know from AN patients, that you almost always get some problem from surgery? even if it goes away, that's one more problem than I have now. Help! Those of you with knowledge of this problem, what do you think?

I think that you raise some valid questions.  It is true that the AN patient can usually expect at least some post-op complications, but these are usually temporary.  Even permanent deficits arising from the surgery can be treated successfully, sometimes with surgery, medication, physical therapy and other alternatives. In some cases, the AN surgery patient may have one or two minor deficits that are effectively unnoticeable to anyone else but he or she is able to surmount them and/or they are small enough not to impact the patient's quality of life.   This has been my experience.  The reality is that an acoustic neuroma is located in a very sensitive position regarding crucial facial/cranial nerves.  Any treatment can affect one or more of those nerves and cause a post-treatment problem for the patient.  That is nearly unavoidable, although having a very AN-experienced surgeon/radiologist is a good precaution against post-treatment issues developing.  In the final analysis, when looking at treatment options for treating an acoustic neuroma, risk is simply unavoidable.  No doctor can offer a guaranteed outcome and, yes, some AN surgery and radiation patients do experience problems following their treatment and, in a few case, the problem is nearly intractable, which is daunting...but, thankfully, very rare.  

If you have a diagnosis of an acoustic neuroma, based on it's size and location, you'll have two choices: surgery or radiation.  Both carry some degree of risk.  However, should one choose to not address the tumor at all, it will continue to grow, the patient will lose nerve-related functions and eventually, if the tumor presses hard on the brainstem, the patient could die from complications that would ensue.  This makes ignoring the tumor a non-option.  Frankly, every AN-diagnosed patient has the agonizing decision of choosing one of the two options I've stated.  Some, like me, undergo 'debulking' surgery then radiation.  My procedures went well and were successful.   I hope you'll have a similar experience, whatever option you eventually choose.

Jim

[sunfish]

I think this is a great, thought-provoking thread.  In my opinion, there may be a certain number of ANs which are found "fortuitously" when someone's head is being scanned for another reason.  At least that's what I read on the internet - that they're finding more of these small ANs due to improved technology.  If you don't have any AN symptoms, it's a really good question as to whether you would want to expose yourself to the risks involved in radiation or surgery.  Lots of factors go into the decision - your age, employment, family, personal preferences, etc.

When I was looking into treatment, I was cautioned by a radiation oncologist acquaintance that Cyberknife is rather aggressively marketed to patients, in his opinion.  I'd like to state that I'm very glad I ultimately had CK, but I would agree with my doctor friend.  When you're a carpenter, everything looks like a nail, and when you have a jillion dollar Cyberknife to pay for, of course you're going to recommend that treatment in many instances.

In retrospect, I think it is ABSOLUTELY IMPERATIVE that folks take a serious look at getting a second and even third opinion prior to making their treatment decisions, in order to get some balance.

I like just about everything Jim and Paul said in their comments. Lots of good opinions.  Sorry if this was a little outspoken.

[TOM101]

Thanks for all the replys. I lost my hearing in the left ear , that is how I found out about the AN. I wonder how many people have An's that are never discovered! There is a potential for thousands, as many people are not diagnosed until the have 3cm, 4cm etc.
Where is the statistic that says all AN's keep growing so I have no choice except surgery or rad?

[TOM101]

I don't want to seem like I'm picking on doctors. Dentists are worse and no one questions them. In 2007 My regular dentist was about to retire so I tried another dentist close to home. He took rays etc. and told me that my 2 root canals needed to be fixed that they were going to cause great problems for me. So I went to the Endodontist he recommended and had xrays and had the same results.
I thought this was strange and looked on the internet for root canal failure percentages. 2 to 5 % failure over the years, and again I won the lotto I had 2 that had gone bad, what are the odds of that? I took the xrays to my old dentist and he checked them and said they looked exactly like my xrays from 1983. I obviously avoided this unnecessary, and from my research risky oral surgery. Since then 2 other dentist have said I have no problems with the root canals.
My wife sent her 2 kids to the dentist and they both came back with 4 cavities. Took them to another dentist and one of them had one cavity.
Like all of you have said you have to look out for yourself.

[Tod]

We do have to look out for ourselves. We also have to trust people that are trained in these things.

The problem you are encountering in looking for statistics is the same one that plagues us in many other areas of life: there is no central database of everything.

It could be very helpful if we were all barcoded at birth and every diagnosis, prognosis, and treatment recorded through our lives. Someone could then query the database and get a set of very objective responses. For good or ill, we do not yet live in that kind of world (and I am not advocating one way or the other).

Instead, what we have is some number of doctors who engage in the various specialties. For us, that is ANs. Some of these doctors simply practice their profession and treat patients. Others, treat patients and conduct ongoing research about their practice and sometimes publish results. Still others research and treat patients in hopes of finding better ways of treatment and perhaps even determining if W&W is the best way to proceed for some group of patients.

However, all these docs suffer from the same limitations. The biggest limitation is Time. If you think about it, how much time does a neurosurgeon or neurotologist spend with a patient post-surgery? Basically it will amount to a handful of minutes on regular or semi-regular intervals over a few years. What does that work out to? A few hours? Half of a day? Maybe double that when add the time for reading each MRI?

So their practice is built on seeing a many, perhaps a lot of, patients with similar conditions for these brief periods of time. They supplement this by reading articles from other specialists and talking with colleagues and exchanging notes.

(Please understand, I am not being critical, I am trying to outline the limitations of knowledge for the people we end up having to trust with our lives.)

An AN specialist really has no idea what we as patients experience unless they have been through the experience themselves. And that is self-limiting as there does seem to be a bit of a difference between a seven-hour surgery and a 31 hour surgery.

Where we can help, and this probably applies to all sorts of specialists, is through supporting the efforts of groups like the ANA and working with our doctors to help them understand our experience. How do we do this? Diaries, journals, blogs, CaringBridge, CaringPage, all of these provide tremendous potential for case studies. I have spent a fair amount of time documenting my experience and let my surgeons know of this project. (They are very interested and I hope they will use it with their students to some degree.) The simple fact is that first-person accounts can do a lot to advance a field of study.

It really be nice if we had really good statistics on progress and outcomes for W&W, Radiation, and Surgery. However, unless we want one single entity tracking us, I don't see it happening...even if we found someone to pay for it. I really don't think doctors try to scare us into treatment, at least those patients with small tumors. I think they make the best recommendations with the knowledge and information available....and it is pretty clear that things get very bad when these tumors get big.

I've probably rambled a bit here, but I have been thinking about this as a research problem for awhile, so I apologize if I have.

-Tod

[TOM101]

There are some statistics out there here is an example of surgical statistics.
http://www.bioportfolio.com/news/article/192904/9-year-Study-By-The-Skull-Base-Institute-Confirms-Success-Of-keyhole.html

[Tod]

Right, but that study exemplifies part of the problem: it is one entity studying one procedure. There are many studies across the spectrum of health sciences that do that. The difficulty lies in getting in all specialists to report and track accurately to a single clearinghouse where the results can be studied over time.

Since this is very similar to what I do for a living, maybe I should talk with the med school and see if folks want to collaborate on a grant application to create such a clearinghouse.

-Tod

[TOM101]

This is even bewtter I think this one answeres my question as to why I got the AN.
http://www.patient.co.uk/doctor/Acoustic-Neuromas.htm

I had my tonsils taken out twice when I was a child and the reason was that the first time they did it with RADIATION. This is a major cause listed in this article.