how do you know if an AN has really grown?

[***Leigh***]

Mmmm... it "seems to have grown", "it seems to be about the same or possibly shrunk".  How do consultants really kno111w whether an AN has grown or not.  It seems like MRI scans slice the tumour at different points with each scan so depending where it is sliced depends on its size.  I've been told mine is 9mm but everyone else seems to have a xmm by ymm tumour.  Should I have such measurements?

I've been on watch and see since 2003 and last year no movement seems to have happened but this year I've been told it seems to have grown.  How can I know exactly whether it has grown or not.  I dont really want to do anything and cause more symptoms if its not growing. Do I wait another year and see what they say then? 

I'm not wanting to have someone poke around in my head un-neccesarily nor do I want to have radio surgery and cause a malignant tuour in future.  Its kind of scarey but how do you know what is best when I cant tell what exactly is happening.

I only have reduced hearing and tinitus in my left ear, no probs with balance, facial movement or headaches so I guess I am pretty lucky.

Any advice much appreciated.

L

Could I get them to scan in exactly the same place next year?  Does anyone know how MRI scans slice for the pictures?

[Larry]

Leigh,

the radiologists are pretty good at determining growth changes but I have seen a few posts where the growth was slightly different to the pictures.

As for MRI's, it's very advisable to use the same machine. They are all different in strengths, so for a consistant trend, use the same machine.

As for radiotherapy causing the tumor to go malignant, the odds are very, very low. there are stats on various studies in this site, just do a serach on the key words.

I had middle fossa done 3.5 years ago and it has returned so I am really p...d off. I am currently on watch and wait and am having MRI's 6 monthly. When it gets to a point of growth spurt I will be having Gamma Knife treatment on it. I will not go under the knife again if I can help it. There are other people with different stories to me that have been very happy with middle fossa, trans lab or retri... You need to research the options, make an informed decision and stick with it.


Laz

[mdallas]

Laz,
You said your tumor has returned after midfossa.........

How did you discover it?  Did you start having symptoms again or had they been monitoring you since your midfossa?  I'm about to have midfossa done and I haven't seen my ENT yet.  i was just wondering if they monitored you since the surgery.

I just had my MRI done on March 1, and I haven't heard the doctors mention bilateral AN, but since my MRI, I'm starting to experience symptoms in my right ear.  I don't know what to think.  I don't want them to miss it, if there is actually one there.  Or could it be symptoms from the one I already have ?  i don't know......I'm babbling now, but  anyway, I was just wondering.

-md

[Larry]

mdallas,

I made sure that I had an MRI 6mths after my op and then annually. my ent thought that that wasn't necessary - yeah right.

It is the regular mri's using the same machine that spotted the re-growth. I haven't had any other symptoms except some small change to extra blockage in my ear - thats when i got suspicious.

Hopefully your other iear's issues are infection or other blockage - the mri will tell you if it's anything else.

Laz

[Battyp]

Mdallas what kind of symtpoms are you having in your right ear?

Larry did they tell you they got all your tumor out at surgery?  My first mri was clean have another one in June..I sure don't want this sucker to grow back!  How long a time from your initial surgery to regrowth?

[Larry]

Batty,

I remember distinctly that my surgeon told me that "They got it all out". I must ask for the surgeons report coz I was really angry when i found out 2.5 - 3 years later that it had re-grown.

Sorry for this post (I much prefer the Good Morning one) but i made it compulsory for me to have regular MRI's irrespective of the few hundred dollars that it costs me - it's a piece of mind thing.

When i found our it had re-grown, I challenged the surgeon who saud that they left "the casing behind" but got all the tumor out. i never knew about this so called casing and still don't. needless to say that i sacked that ENT and have moved on.

My replacement ENT who is more experienced than my previousw one does not do any more MF ops. It's translab or watch and wait.

Laz

[becknell]

Larry -- the tumor is encased in a thin, skinlike casing or capsule, think of it sort of like a sausage casing, I think that's what your doctor was referring to, think it's fairly common for doctors to leave tiny pieces of this capsule or casing behind to avoid causing further damage to the nerves, etc. and with the thought that the chance of regrowth is unlikely. But it can regrow even if they think they get all of it, though it's not likely.

[Larry]

Becknell,

Whilst i was very upset at my ENT for not fully informing me pre-op, I must say that I was pretty lucky in that no facial nerve issues, just blinding headaches that don't go away, EXCEPT when i roll over and have a good old fashioned belly laugh on the "Good Morning" thread.

Sausage casing huh? mmmm, maybe I should have not eaten that many sausages in my younger days coz they are now getting me back. (really gone mad now - maybe i have mad cows coz of all the sausages I've eaten?)

Laz

[becknell]

Larry, you are cracking me up, lol. 

[mdallas]

Laz--
Thank you.  I really appreciate the info.

Battyprincess--
My symptoms in my right ear are almost like the ones in my left ear with the AN--feeling of fullness, some intermittent pain.  However, I haven't discovered any hearing loss.  I'm thinking it may really and truly be due to my sinuses.  I've been having a bit of trouble with them lately.  Although, that's what I thought it all was in my left ear to begin with until it wouldn't go away.  So, I'm just worried that's all.  I hope all it is is sinuses.

-mdallas