Has anyone heard this?

[BeJoi]

On Tuesday, the neurosurgeon I saw told me that if you wait and watch an AN, 1/3 of them will shrink, 1/3 of them will remain the same, and 1/3 of them will grow.  Has anyone else ever heard this?

Beverly

[Derek]

Hi Beverly...

Being a 'wait and watcher' I have also 'heard' that the older you get the growth rate of the AN diminishes albeit my GK neuro is pesimistic that I will probably require 'management' at some time in the future!

I am now 63 and into my 6th year since diagnosis.  My recent annual MRI scan indicated no increase in the growth rate and no change in the consistency so I remain optimistic that I may never require medical intervention. I  like the odds you quote re 66% chance that my AN will either shrink or remain the same...here's hoping!

I would be interested to know if your neuro has any stats to substantiate the facts that he quoted to you?

Derek

[BeJoi]

Hi Derek,

That's great news about you.  He didn't quote any statistics and I'm not sure if or when I'll be seeing him again to ask.  I'm 49 next month, so I'm not sure how old you have to be before it may stop growing or even shrink.  It makes me wonder if there's a hormone connection.  If anyone knows of any research about this please let us know.

Thanks,

Beverly

[Derek]

I raised this query with the esteemed Doc Medbery over on the CKPSG board and he responded as follows:-

(quote)These statistics are not accurate. Only a small percentage (6-8%) will spontaneously regress. About half will grow and half will not. Average rate of growth is 1-2mm per year. There does appear to be a reduced risk of growth in people over 65 years of age. The 'kicker' is that observation has a down-side..about 50% of people who are observed (wait and watch) will suffer significant hearing loss. Given the low risks associated with radiosurgery, we have generally advised treatment but there are exceptions (unquote)

According to Doc Medbery then if, like myself,  you are a 'wait and watcher' and you already have total single-sided hearing loss and you have reached your mid 60s there is a good chance that you will be able to avoid future medical intervention.

Never thought I would ever be looking forward to my 65th birthday!

Derek

[BeJoi]

Wow, Derek, thanks.  This quote pretty much supports what the radiation oncologist told me and why I'm not going to wait and watch.  I've still got low normal hearing in my right ear, and if I can, I'd like to preserve it.  Like I said before, there are no guarantees that the hearing will be preserved, but this seems like my best chance.

I think you're close enough to 65 at this point to breathe easy  .

Beverly

[Derek]

I raised this query with the esteemed Doc Medbery over on the CKPSG board and he responded as follows:-

(quote)These statistics are not accurate. Only a small percentage (6-8%) will spontaneously regress. About half will grow and half will not. Average rate of growth is 1-2mm per year. There does appear to be a reduced risk of growth in people over 65 years of age. The 'kicker' is that observation has a down-side..about 50% of people who are observed (wait and watch) will suffer significant hearing loss. Given the low risks associated with radiosurgery, we have generally advised treatment but there are exceptions (unquote)

According to Doc Medbery then if, like myself,  you are a 'wait and watcher' and you already have total single-sided hearing loss and you have reached your mid 60s there is a good chance that you will be able to avoid future medical intervention.

Never thought I would ever be looking forward to my 65th birthday!

Derek

Doc Medbery has since qualified the aspect re age:-

(quote) Don't think that ANs stop growing at 65. There is no evidence. There is just evidence that those that are DISCOVERED after age 65 may have a different natural history.....If your tumour has not grown in 5 years then it is likely it won't although I would continue to watch it annually. (unquote)....'bugger' (my quote!)

My AN was discovered 5 years ago at age 58 re my GP having diagnosed my single-sided total hearing loss as 'old age'!! I insisted on an MRI scan and a 1.6cm AN was discovered. So with only 3mm growth in just over 5 years and no recent evidence of enlargement I remain optimistic that post my 65th birthday status quo will prevail.

Derek

[Boppie]

Okay, my turn to weigh in on this.  My hearing loss advanced over a four year period to reach the 30% useful range.  I did not experience loss "knowledge" until age 60.  I started complaining of difficulty hearing the clock at age 60; a routine audiogram test indicated "old age" factor. Like some people my AN was discovered after the second routine visit to the GP and a second audiogram.  I was referred to the ENT for an MRI at age 64.   I had a 2 cm X 1.5 cm X 1 cm in my rt side, no useful hearing left.  I had no other obvious symptoms other than a new preference to sing in the tenor alto section, instead of the upper range alto section.

I have always relied on family history records in my own health care.  My mother is hearing impaired on both sides at age 87, and in good health. 

Based on the previous stats, I must be one of those people who had the two options.  But I would like to be 87 like my mom some day, without having that AN involved with my brainstem.  So I am happy I had surgery.