Author Topic: what is the largest an that has been found ?  (Read 11956 times)

lmurray69

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what is the largest an that has been found ?
« on: March 26, 2006, 06:35:43 pm »
   I was just curious as to what is the  largest  in size for a an.. What size does it have to be before we have no chose but to remove it. I think this would help the watch and then do something..
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

Battyp

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Re: what is the largest an that has been found ?
« Reply #1 on: March 26, 2006, 06:37:50 pm »
Mine was 2.8CM  and had to come out as it involved my brain stem.  I know I've read others with larger AN's and I would imagine it would all depend on your symptoms and location.  According to one neurologist...AN's don't need treatment regardless of size depending on what it's affecting.  Of cours I also thought her to be a quack  lol 

Captain Deb

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Re: what is the largest an that has been found ?
« Reply #2 on: March 26, 2006, 07:14:33 pm »
Yes, I had the option of leaving mine in and letting it chew up my facial nerve eventually, but I chose to nip it in the bud.  I was at House with a fellow whose was over 4cm with no symptoms other than slight facial numbness.
Capt. Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Kathleen_Mc

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Re: what is the largest an that has been found ?
« Reply #3 on: March 26, 2006, 07:55:14 pm »
It is my understanding that as long as the brain stem is not significantly displaced this tumor is not life threatening.If it grows to completely fill the space in the auditory canal and the space outside behind the posterior lobes and displaces them only the tumor can remain. It will then eventually start to displace the brain stem and surgery will be needed (and a touchy surgical situation). Without surgery the tumor will eventually put enough pressure on the brain stem the person will stop breathing.
Someone once asked if they will just stop growing on thier own and encouraged me to just hope for that and not have the second surgery I just had until I have no other choice......they will keep growing if they have so once a pattern of continually growth is established I don't see the point in waiting to treat anymore, at least not in my case where I had already lost all I could with the first surgery.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Gennysmom

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Re: what is the largest an that has been found ?
« Reply #4 on: March 26, 2006, 10:17:32 pm »
I believe Raydean's husbands was 6 cm. 

I think, from what I've researched, is that in some aspects size doesn't matter if the brainstem is involved.  If it's not, then there's a little leeway.  Mine is 3.1 and pressing, so I have no choice other than surgery.  I think I remember hearing of others that are 1.5 or so with the same issue, and so they have to come out.  It also depends on your age.  I'm 40 (the doctor called me young, bless him) so they wanted me to do surgery.  That's the difficult thing about this tumor, is that you could average everything, but really, each one is different in it's own way, so it seems. 
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
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wanderer

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Re: what is the largest an that has been found ?
« Reply #5 on: March 26, 2006, 11:24:38 pm »
I have been told by some of the doctors that I saw they have removed An's as being as 6-8 cm       I have seen MRI's of large An's the displaced the brain stem and closed off the 4th ventricle.       They were enormous.

At 2X2X2 (it actually was bigger than they thought but I don't have that measurement)  I had significant displacement of the brainstem but normal vertrical.   As I understand when the Vertricle is involved it is very serious.

Battyp

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Re: what is the largest an that has been found ?
« Reply #6 on: March 26, 2006, 11:31:38 pm »
wanderer curioius to know if you know the problems associated with 4th ventricle involvement?  My tumor indented my pons and slightly was indenting the 4th ventricle.  My brain stem was displaced.  I guess that is why the recovery for me has been so difficult.  I never do anything the easy way  lol

Joef

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Re: what is the largest an that has been found ?
« Reply #7 on: March 27, 2006, 12:53:53 pm »

I've seen and heard of people on here with 6cm+ but not larger that 7cm ...

I think thing they had larger ones years ago before MRI's !!
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
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ppearl214

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Re: what is the largest an that has been found ?
« Reply #8 on: March 27, 2006, 03:18:12 pm »
I've heard up to 5cm, but not more.. but that doesn't mean anything... I'm a newbie to AN's (for only the past year).
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Raydean

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Re: what is the largest an that has been found ?
« Reply #9 on: March 27, 2006, 05:17:43 pm »
If the 4th ventricle is blocked due to tumor size this this will lead to hydrocephalus which if  left untreated becomes a serious situation.  The ventricles  are openings which  allow the  spinal fluid to freely flow.

best to all
Raydean 
Do not go where the path may lead, go instead where there is no path and leave a trail.

Snowball

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Re: what is the largest an that has been found ?
« Reply #10 on: March 27, 2006, 11:40:19 pm »
Mine was 6+ cm., diagnosed because I had worst headache of my life and lost conciousness (sp?) due to hydrocephalus from blocked ventricle.  Scary thing is my neuro said that while I had a huge tumor, it wasn't the biggest one he had ever seen so there are some really big ones out there! 

Kay

Larry

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Re: what is the largest an that has been found ?
« Reply #11 on: March 28, 2006, 05:39:56 am »
Kay,

what was your treatment and how are you coping now?

I am 3.5 years post op and still have rotten headaches.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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Snowball

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Re: what is the largest an that has been found ?
« Reply #12 on: March 28, 2006, 10:52:19 pm »
Larry,

I had surgery to "debulk" the tumor  down to 2 cm., and then when it started growing a year later I had GK done.  While the tumor is currently not growing, it isn't getting any smaller and it hasn't shown any signs of "dying" either.  Unfortunately, I am now on SSD.   I came out of surgery ok, had lost my hearing prior to surgery, and I had slight cognitive and memory problems after shunt placement for hydrocephalus, but after GK procedure cognitive and memory functions worsened, lost vision in the eye on same side as AN, facial paralysis, and balance problems.  But I'm still here to watch my kids grow, so that's the most important thing.

Kay

BP Wench

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Re: what is the largest an that has been found ?
« Reply #13 on: March 28, 2006, 11:02:56 pm »
Kay you confused me for a minute..ssd social security disability?  I thought you were talking about single sided deafness.  Sounds like you had a rough time of it...

Gennysmom

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Re: what is the largest an that has been found ?
« Reply #14 on: March 28, 2006, 11:04:45 pm »
Wow, Kay, you are an ispiration.  How far out are you from surgery and then GK?  I wish you many good days and that you have many smiles watching your kids grow.  That truly is what life is about.  
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar