ANA Discussion Forum
General Category => Inquiries => Topic started by: Denisex2boys on November 15, 2008, 02:07:13 pm
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When I was diagnosed with my AN it was 1.5 cm and when it was removed it was 2 cm - - my observation is ... does the size really matter - - I had a GREAT ENT who told me the (3) options ..... watch and wait, radiation and surgery - - I am 44 and he told me that at my age surgery was really the only option he would suggest (for me I may add) - it was my choice not to investigate radiation. He also suggested to me that watch and wait - NO - that these grow - they don't go away on their own ..... I will add that I had sudden and significant hearing loss, some facial tingling, some minimal dizziness and headaches.
The reason I bring this up is ..... I have met many people who have had huge tumours and they had no choice - they needed to come out - - and generally speaking is it not true that the larger the tumour the more risk for facial and other complications .... ?? My tumour was 2 cm and it took 12 hours to remove and I seem to be having more post-operative effects than some that have had much larger tumours - I can't even imagine had I chosen to watch and wait - and the beast had grown that much bigger .....
I am just wondering if it is more the position of the tumour and the symptoms one has pre-operatively that is more the decisive factor as whether to move forward with surgery/radiation rather than to watch and wait.
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Yes, in this case, size does indeed matter. As does location. ;D
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Well...I can say i am having Quiite a time post op....My tomor was 2 cm deep in the vestubeular,near brain stem.
I have no facial weaknes but nerve weekness in neck & toungue & spot on my leg.Many other crappy things dailey.I think that size may not really matter(who would have known!!!)
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I have to agree with Marci that size does matter, but location matters also.. Where your tumor is located has much more of an impact as far as symptoms go, but from what I've learned ANs are easier to treat when they are smaller, this is true for surgery and radiation. My guess is that many larger tumors go undetected for a long time because of their location. My guess is that sometimes these boogers produce no symtoms or such vague ones they are easily dismissed as being of no consequence, age related or are misdiagnosed -- by the time they start causing problems that can't be ignored or call for an MRI, they can become very large. It is my understanding that size, location and how sticky (I believe how sticky the tumor is only a factor for surgical patients -- I can't see how this would affect someone having radiosurgey)) the tumor is are the determining factors in each person's outcome. Unfortunately, there is no way to determine how sticky a tumor is until they get to it during surgery. Also, sometimes a tumor will be wrapped around a nerve or a part of a nerve, for example nervus intermedius or the eye moisturizing nerve, nerve will be caught up in it and have to be sacrificed, which also obviously accounts for the problems some people have.
Wendy
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Here is my theory on size and location. :)
Small tumors, below 1.5 cm, are typically all in the canal, where they may or may not mess with the balance and hearing nerves. Medium tumors, 1.5 to 3 cm, have grown into the CP angle, with that ice cream cone shape, where they may or may not mess with the facial and other cranial nerves. Large tumors, over 3 cm, have started distorting the shape of the brainstem itself. If they are allowed to mess with the brainstem, serious trouble can result.
So size determines which nerves are in play, while your particular AN determines which of those nerves actually get affected. If your AN doesn't do much to the balance and hearing nerves when it is small, you don't notice it, and it grows into a medium one. If it doesn't do much to the facial or other cranial nerves when it is medium, it grows into a large one. Once it is big, it may or may not affect some of your nerves, and hopefully you get surgery before it starts messing with the brainstem itself.
Steve
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my moms 3cm AN is pushing on her brainstem, causing dizziness...what do you mean hopefully it doesn't get to that point? everything is still fine, right? i mean she will most likely have to get surgery, but everything is still really treatable?
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Size definitely does matter - as does location.
Generally the larger an AN is the larger the potential for side-effects - facial nerve damage, hearing nerve damage, balance nerve damage. Although there are no hard and fast rules, and everyone's experience is unique, generally larger ANs lead to more "issues".
Size is also a factor in whether or not a patient can have radiation. If the AN is too large, surgery for removing or debulking is pretty much the recommendation.
Jan
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Kdmob07,
When the doctors think that waiting is not an option they operate. If they've told your mom to wait, it's probably fine.
Marci
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Sorry, Kristin, I didn't mean to give you a scare. Yes everything is still fine and treatable for your mom.
The dizziness she is experiencing is most likely the balance nerve. Her AN is up against the brainstem, but not interfering with it. The kind of brainstem thing I was referring to is when it starts giving you seizures or something like that - the straight to the emergency room kind of stuff. I think your mom is a long way from that. I should probably have said 4 or 5 cm as the really large size that can start to do that kind of thing. Sorry for not being more careful.
Steve
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ditto on all responses that size and location are critical in determining which treatment path to take.
on a separate note, size does NOT matter when it comes to post-surgery or post-treatment effects/complications.
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thanks for clearing that up steve :) whew!
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Denise:
I know it's a bit redundant at this point but I have to concur with the general consensus here that both size and location (of your AN) 'matter', in terms of the possibility for problems. My AN was 4.5 cm and clearly pressing hard on my brainstem. Although my symptoms weren't overly severe (no seizures) the neurosurgeon I chose was clearly alarmed and would have had me in surgery the next day, if he could have. Actually, it was about 10 days later and all went well.
We can generalize and find a broad base for determining what size AN will likely have what effect on the patient, as Steve did (and I agree with his observations). However, judging from the many AN stories I've read on these boards over the past few years, every AN case is as unique as the individual involved. With acoustic neuromas: one size just doesn't fit all. :)
Jim
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Denise,
The ease or difficulty with which an AN is removed surgically is not only due to size and location of the tumor. Another important factor is how sticky the tumor is. My surgery for my 1.5cm AN, my doc told me, was really easy and fast (5.5 to 6 hrs) because the tumor peeled right off the nerve. For this reason my hearing and facial nerves were not damaged much more during surgery than they already were.
Your 2.0cm tumor may have been really sticky or wrapped around the nerve, leading to additional damage to the nerves during surgery.
Your age is a factor also in deciding whether or not to have surgery.
Example: If your drs discover you have a 2.0 cm AN when you are 80 years of age, they may recommend radiation because at 80, surgery is much harder to recover from than it is for a 35 or 55 yr old. Drs may recommend W&W. Most likely, an 80 yr old will die of something else before the AN gets a chance to do more damage.
Your health is also a factor. If you are in poor health, whatever your age, your body may not handle surgery. And radiation may be the better choice. Maybe a combo of surgery and radiation.
I think that two AN patients with the same size tumor in the exact location having the exact same surgery are going to have a different outcome. There are no set formulas with ANs because there are too many factors in the mix.
Syl
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Syl and Wendy are right in that sticky tumors tend to be a bit more problematic, especially if they are large enough to be touching the facial nerve. My tumor, which was characterized as medium sized, was quite sticky and the surgeons opted to leave some behind rather than risk permanent facial nerve damage. The facial problems I had were the result of the facial nerve being so stretched by the position and stickiness of the tumor. Unfortunately, I don't think there is any good way to determine stickiness before the surgeons get in there.
Debbi