6.5 MM AN: Observe vs Radiosurgery?

[brunsje]

Hi.  This is my first post.  I had a routine 5 year MRI follow up looking for family history of aneurysms when I was diagnosed by my Neurologist with a small AN.  I have no symptoms and normal hearing.  I have my initial visit with a Neurosurgeon in a week.  I have read many posts here at ANA, Thanks for all your assistance.  Several questions:

1.  There appears to be little research documenting past results.  Is there a study that summarizes Radiosurgery results including post-treatment outcomes regarding side effects and regrowth.

2.  Is there any 'general' size when I should consider departing from observation and head towards radiosurgery?  I realize that specific location and shape is a large factor.  Is ~ 10mm a good point to consider undergoing radiosurgery?

3.  Should I consider treatment soon to retain full hearing?  Perhaps a smaller AN would receive a smaller radiation dosage and have less nearby nerve exposure with reduced side effects if I had the radiosurgery done as soon as feasible.

4.  Should I observe the tumor every 6 months and determine a growth rate and not proceed until my hearing or balance is beginning to show symptoms?  I have read that there are quite variable rates of growth.  It appears I may go several more years with no symptoms or it could be fast growing and need treatment within the next year?

In summary, I am having trouble weighing the gains and risks of delaying treatment with the gains and risks of early treatment.  Should I be passive and risk it growing larger with a likely higher dosage of radiation to my brain or be aggressive and 'get'er done' now?

I appreciate all your help and plan to consult as many medical professionals as feasible. 

But you folks have walked the walk before and I deeply value your opinions and assistance.

Thanks / Johnny B

[macintosh]

Johnny B--

My situation is very similar to yours. I had radiosurgery two months ago for a 7mm AN. I’m 54 years old, and my symptoms were deteriorating hearing on one side (though still usable) and increasing tinnitus on that side. I have had no change in symptoms after radiosurgery. As far as I can tell, my hearing is stable and the tinnitus is only noticeable if I stay up late and maybe have a few drinks.

I did a lot of research before coming to my decision. Some of the best sources I found were articles at <pubmed.gov>, using the search terms <acoustic neuroma radiosurgery>. The website at the University of Pittsburgh (Google <University Pittsburgh acoustic neuroma>) is also very informative.

In addition to the size of your AN, location and your age can also be factors in your decision. I figured that I’m going to be around long enough that this will have to be done sometime, so it’s best to get it while it’s small. That’s not a universal conclusion. As the Pitt website shows, some neurosurgeons in your position would continue to watch and wait. Some would go ahead with radiosurgery.

My thinking was that the AN itself does damage, and if it’s allowed to grow until it does more damage, that’s irreversible. I think it’s also right to say that the smaller the AN (and location also matters here), the less likely it is that radiosurgery will damage important surrounding tissue.

The good news is that with a small AN, you have plenty of time to research and to think about your options, and the success rate for radiosurgery on small ANs is very high.

Good luck, and I hope this is helpful.

Mac

[brunsje]

This is the author of the original post.  Thanks for the two quick and helpful replies.  I did forget to add that I am 49 years young.

[ppearl214]

Hi JohnnyB and welcome.

Well, I'm *coff* 46 (I think, at last check) and next week will be my 1 yr anniversary of having Cyberknife radio-surgery.  My understanding that the standard "cut off" size for radio treatment of AN's is approx 3CM, so you are very fortunate that your's is very small and not in need of immediate medical intervention, where you can take your time and research, research, research.  Mine was 1cm (10mm) at time of my treatment last year, so very safe at the size you note.

Hearing retention is usually in the 90's percentile with radiosurgery.  Unless someone else here can provide specifics, since your AN is small, you should do well with hearing retention (I have retained 100% of mine for what it was at time of treatment). As we all know, all treatment options come with risks, so when talking to medical professionals re: your AN treatment options, please make sure you ask about hearing retention and the risks involved.

As others note here, no one can tell you which protocol is best for you.  You are doing the right thing with the research you are doing. Inquiring to those of us that have endured treatments (all forms, micro-surgery and radio-surgery) is a smart move and why this forum board is here. That patient to patient connection will help you in learning more about how each of us are dealing with the our diagnosis, treatment options and outcomes.  Our inboxes are open as well as many of us that are more than happy to speak on the telephone since sometimes, it's awkward to try to "write" what we are trying to say (trust me, I fail on that one all the time).

Question:  Where are you located and as of now, have you researched any particular protocol so we can help narrow down answers and outcomes for you?

Hang in there and welcome. Glad you found us here.

Phyl

[brunsje]

Phyl,

I live in Arlington VA in the Metro DC area.  I like what I have read about CyberKnife treatment.  Georgetown University Hospital has one of the first CyberKnife machines.

Thanks for your support

Johnny B

[Derek]

Hi there 'Johnny B'...

Similar to Bruce, I am also an avid 'wait and watcher' having been diagnosed just over 5 years ago. I am 63 and my AN is now 2cm having only increased approx 3mm since original diagnosis which is below the average annual growth rate of 1 to 2mm.

The hearing on my affected (right) side became totally lost within a few months of diagnosis and other than very minor tinnitus, my hearing and balance (which was temp affected prior to diagnosis) on my unaffected side has totally compensated and I consider myself very fortunate that I have no other symptoms.

My next MRI scan is due mid April and if there has been no increase in the growth rate I will continue observing and enjoying a high quality of life until such time that any future scan and neuro advice indicates that treatment time has finally caught up with me whereupon my choice will be GK re CK  not yet available within the UK.

Make sure you get the best possible professional advice ensuring that your eventual treatment choice is one that YOU are totally comfortable with ensuring that your eventual treatment option will be undertaken by a neuro who is a specialist in the treatment of ANs and who has literally carried out hundreds of such procedures on a very regular and recent basis.

Very best of luck with your eventual outcome.

Derek

[macintosh]

Johnny B--

Just to mention--in your area, Johns Hopkins and the University of Virginia also have very good and very extensive track records in treating ANs.

Mac

[Sheryl]

Hi Johnny B - Another "wait and watcher" here.  Found my tumor November of 2001 and as of last November, 2006 it had only changed from initial size of about 9 mm to 12 mm - so, 3 mm in five years is okay with me.  It is also not pressing on the brainstem.  I do not have any symptoms and I also do not have a "real" AN - mine is on the 9th cranial nerve rather than the 8th, but still in the same category of a neuroma or schwannoma.  Rather than the balance and hearing issues, my symptoms (if I had them) would be hoarseness, swallowing and gag reflex problems.  Having just turned the big 6 - OH, I've already decided on radiosurgery if and when the need arises.  Even if I were younger, I'm not sure I would go the surgical route from everything I've researched in the past five years.  BUT, this is a personal decision and one you have to make yourself and feel comfortable with.  You don't want any "shoulda's, coulda's, or woulda's".  Take your time - you have it - this is NOT an emergency.

As an aside, my husband had another type of benign brain tumor (meningioma) removed almost three years ago.  Unfortunately his now shows regrowth and we are doing lots of research and getting opinions from many sources.  Surgically it is in a very easy spot to get to (right on the top of his head) but he does not like the thought of having his head cut open again - and I don't blame him!!  He's been told surgery first and then radiation this time around. 

Keep us informed.
Sheryl

[Evan]

Most of the previous posts have covered it all.  If you look at my "tag line" at the bottom of this post, you will see that they do not know what I have.  In fact my doc stated that sometimes (and he was half joking) tests like MRI's can be more of a detriment than a help.  In your case, without the family history of aneurysms, your AN would have never been detected and it is quite possible that at 49, it may have been there for many years and would remain there for many years without any symptoms.  As my docs said, even if they were sure that it was an AN two separate docs said that they would have done nothing as I do not have any symptoms.  I am supposed to get a repeat MRI in a couple of months to see wht "it" has done.  Your docs have to help you make the right decision, but I suspect that with no symptoms and with the small size, they will opt to do nothing. 

If treatment is an option, there are a couple of studies re: radiosurgery v. microsurgical results, and I believe someone mentioned the U of Pitt study under Dr. Lunsford.  There is a wealth of information here and on the internet and most of us here started with as little information as you have now.  Good luck and I am sure you will be fine.

Evan

[River Rat]

Hi Brunsje,

Another option in our area is Dr. Jeff Jacobson, who does Gamma Knife at the Washington Hospital Center.   If you are doing consults as you watch and wait, you may want to talk with him.  I consulted with both Dr. Jacobson and Dr. Jean at Georgetown before proceeding with GK.

River Rat