Decisions, Decisions, Decisions

[Ernie]

I have done a lot of research and soul searching since being diagnosed a couple of months ago.  I am rapidly approaching the point of making a decision for a plan of action.  This forum has helped answer many of my questions and I am thankful it is here.  There are still questions that I hope someone can help me with.  The topics vary so I did not know where to post them. 

My AN was 6 – 8mm three months ago when I was first diagnosed.  My hearing on the AN side is still pretty good but has definitely gone down.  Mid to high frequencies are down and the graph from the hearing test has a u or trough shape.  Tinnitus is there but I don’t notice it most of the time.  The VNG test estimated my balance function has been reduced by 37%.  I only notice a very slight balance issue on occasions.  I am 39 years old.

I have consulted with Dr. Kevin McKennen at Sacramento ENT and DR. Wilkinson at House.  I am waiting to hear from DR. Schwartz.  Both Dr.’s said that all options are available for me given the size of the AN.   At this point, I am leaning towards having the MF approach done at House.  I would say that I am about 80% there.

Here are my questions:

From the information that I have seen, it is my understanding that the radiation options are only recommended for the elderly and those who can not do surgery because the long term effects are not yet known.  But, from the posts I have seen on this forum it looks like there are more of us deciding on that option then the two groups I mentioned.  What is the deal?

I know that the MF approach may put my facial nerve at greater risk but since my AN is small I feel comfortable with the risk.  However, I have read some opinions by “expertsâ€? that claim the long-term preservation of hearing from the “preservationâ€? approaches is not realistic even when good hearing is present after surgery.  Their opinion is that one should enjoy their hearing until it is gone then have translab because of all the risks associated with the other approaches are not worth the short-term hearing gain.  Anyone have info or thoughts about that?  Is long-term preservation realistic?

Are the issues associated with taste, smell, and fatigue things that generally clear up with time after surgery?

Thanks for your time
Ernie

 

 

[Jim Scott]

Hi, Ernie - and welcome.  I'm sorry you have a reason to visit this site (an acoustic neuroma diagnosis) but I'm pleased to learn that the forums have been of some help to you in making a treatment decision.  I'll attempt to answer your questions, although some are not definitively answerable because the answer is unknown (even to doctors) or the decision is yours, alone. 

From the information that I have seen, it is my understanding that the radiation options are only recommended for the elderly and those who can not do surgery because the long term effects are not yet known.  But, from the posts I have seen on this forum it looks like there are more of us deciding on that option then the two groups I mentioned.  What is the deal?

I know that the MF approach may put my facial nerve at greater risk but since my AN is small I feel comfortable with the risk.  However, I have read some opinions by “expertsâ€? that claim the long-term preservation of hearing from the “preservationâ€? approaches is not realistic even when good hearing is present after surgery.  Their opinion is that one should enjoy their hearing until it is gone then have translab because of all the risks associated with the other approaches are not worth the short-term hearing gain.  Anyone have info or thoughts about that?  Is long-term preservation realistic?

Are the issues associated with taste, smell, and fatigue things that generally clear up with time after surgery?

Irradiation, which is non-invasive (no cutting) is an option when the AN is relatively small, usually under 3 cm, which would certainly include your AN.  Some of the cautions regarding radiation treatment are based on the opinions of doctors who prefer performing surgery on AN patients, usually because they don't believe in radiation as a permanent, viable treatment for excising an acoustic neuroma.  Some of that is pure bias, some is the result of outdated information.  In AN patients much under 60, some surgeon's don't want to employ radiation because it makes any future radiation treatment (i.e. for cancer) that might become necessary, problematic.  The human body can only safely withstand so much radiation and the radiation needed to effectively 'kill' an acoustic neuroma comes close to that maximum.  However, many 'younger' AN patients (I'm 66 so anyone under 60 is 'young' to me) have successfully undergone radiation treatment for their AN.  Beware of bias against radiation treatment for your AN.  It's quite prevalent - and mostly based on wrong information and false assumptions.

Long-term hearing preservation is a tough one.  There are statistics that show this is possible - and others showing it as a long-shot.  Hence, the conflicting opinions.  It's not my call but I would go for the Middle Fossa surgery and hope to preserve hearing.  Life is a risk. 

The issues involving taste, smell and fatigue almost always do resolve in time, post-op, especially fatigue, but not always - and not necessarily 100%.  As much as I would like to be able to offer one, there is simply no definitive answer.  My taste returned within 24 hours of my surgery and has remained intact.  My fatigue dissipated within a few weeks but I don't feel I have the same level of stamina I had, pre-op, although I attribute some of that deficit to aging, which I don't think is unreasonable.  Some of our members run marathons and such within a few months after their surgery.  Some have lingering issues many months, even years, later. 

Whether you chose MF surgery or a form of irradiation, it's a risk.  That is the harsh reality of having an acoustic neuroma.  I wish it were not...and I wish you all the best and hope my attempt at answering your very reasonable questions is at least slightly helpful.  I'm sure others will offer useful responses.  Oh, and you posted in the right forum. 

Jim

[sgerrard]

Hi Ernie,

As Jim said, you have chosen the best forum for your post, which is not always an easy task. This bodes well for the decision making that lies ahead.

A quick comment on middle fossa: there are some members who have had MF and still have their hearing several years later. There are others who did not retain hearing, and no one can say whether those who did will retain it forever. But I think having just 3 more years of good hearing would make it worthwhile. Even if it is not forever, having it for a while longer is still a good thing. I think most people would realize that immediately if we were talking about vision, and I think the same applies to hearing.

On radiation: "radiation options are only recommended for the elderly and those who can not do surgery" is almost a quote from the National Institutes of Health (NIH) Consensus Report on Acoustic Neuroma, published in 1991. That reported also recommended revisiting the subject in the next 5 or 10 years, since radiation was then an emerging technology. That never happened, presumably for budgetary reasons, but it should have.

It is an 18 year old recommendation, and things have changed with radiation treatment for ANs since then. According to the Drs. on the Cyberknife forum, AN radiation does not interfere with any future radiation treatments you might need, because the only thing that gets a high dose of radiation is the AN itself. Those 18 years, added to the 10 year results already available back then, indicate that the trend for AN radiation patients is a very low incidence of long term side effects. The malignancy rate, for instance, is too small to measure accurately, but is in the 1 in 10,000 to 1 in 1,000 range.

I personally expect to be a happy AN radiation patient for many years to come.

Steve

[Ernie]

Thanks for the info.

Are fatigue, smell, and taste isues that result from radiation treatments like they do with the surgical options?  What about balance?

Right after I made my post today there was an ad on the radio for a place called Reno Cyberknife.  I checked out their website and AN treatment is one of the services that they provide.  They made some pretty bold claims.  They claim that 85% of their patients had little to no hearing loss two years after treatment.  They also claimed that none had facial paralysis.  I did not see anything on balance.  I am not sure I believe those claims.

Ernie

 

[sgerrard]

Radiation treatment typically does not directly affect balance one way or another. If you have balance issues before treatment, you will most likely still have them after treatment. With surgery they usually clear up because the balance nerve is cut completely, and you can adjust to using just the good side. If you don't have balance issues, though, it is not common for radiation to cause them.

Permanent facial issues are also quite rare, although some experience symptoms during the first year afterwards due to swelling. 85% does seem a high number to claim for hearing preservation, but the rate is probably 70% anyway, and higher if you have excellent hearing going in.

If you are interested in Cyberknife, you should check out the forum on the cyberknife web site: http://www.cyberknife.com/Forum.aspx. There are two practicing oncologists who answer questions there.

Steve

[leapyrtwins]

Ernie -

I'm not a doctor, but IMO, radiation is an option for you and I don't think it's a bad option, should you choose it.

Like Jim pointed out, doctors do have biases when it comes to AN treatments, so if you think radiation might be something you'd like to do, please make sure you talk to at least one doctor who does radiation.   I can't tell you the number of AN patients I've talked to (through the WTT list) who didn't realize that radiation was even a choice.  They only consulted with doctors who performed surgery, so they didn't know any better.   Bottomline, you need to educate yourself before you decide what direction to go.

From what I know of mid-fossa, it's not available to everyone (due to tumor size and location), but it's a great way to save your hearing.  I don't know about any studies, but I can't recall anyone on the forum who had their hearing saved through mid-fossa, only to lose it later on.

I never lost my sense of smell from AN surgery (retrosigmoid, in my case) but I did have taste bud "issues" (metallic mouth) and fatigue post op.  They both went away in time; I don't recall specifically how much time, but it was well before the one-year mark.

Jan

[Keeping Up]

Welcome Ernie

I sound a lot like you - small tumor, mild hearing loss, tinnitus and intermitten balance issues - I am 37 years old.

I have seen an ENT, a GK radiation oncologist and a neurosurgeon.

All recommend waiting as long as asymptomatic and the tumor shows little to no growth.  (I was diagnosed in November.)

None of the them are positive on hearing post-treatment and told to enjoy what I have now.  The neurosurgeon suggested a 50% chance of hearing preservation with MF even with my very good hearing.  The GK team wasn't that positive on the LT presevation of hearing either.  I have definitely encountered the bias and haven't figured out which side is less biased (or even if it is relevant - treatment, if, what, when - is all my decision).

I am just a patient and just an accountant so no medical training and obviously only making the decision for myself, but I will wait it out until it causes me more harm in than the risks to take it out.  I have put a lot of confidence that hearing technology will continuously improve and that the hearing loss related to this tumor - either just the natural progression of hearing loss which WILL happen if I do nothing, or the risk of hearing loss related to surgery or gamma knife (cyberknife isn't yet available in Canada) - will be aided by continuously improving hearing aid technology. (i.e. hearing preservation is not my priority)

Good luck with your decision - it is so very unique to each patient's situation.

Ann

[OTO]

I went to House Clinic for surgery (traveled from Hawaii).   However, many many people have also posted about successful radiation treatments with Dr. Chang at Stanford.    If you want more info, you can do a search of the forum for Dr. Chang....