ANA Discussion Forum

Archive => Archives => Topic started by: lmurray69 on March 26, 2006, 06:35:43 pm

Title: what is the largest an that has been found ?
Post by: lmurray69 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..
Title: Re: what is the largest an that has been found ?
Post by: Battyp 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 
Title: Re: what is the largest an that has been found ?
Post by: Captain Deb 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
Title: Re: what is the largest an that has been found ?
Post by: Kathleen_Mc 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
Title: Re: what is the largest an that has been found ?
Post by: Gennysmom 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. 
Title: Re: what is the largest an that has been found ?
Post by: wanderer 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.
Title: Re: what is the largest an that has been found ?
Post by: Battyp 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
Title: Re: what is the largest an that has been found ?
Post by: Joef 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 !!
Title: Re: what is the largest an that has been found ?
Post by: ppearl214 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).
Title: Re: what is the largest an that has been found ?
Post by: Raydean 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 
Title: Re: what is the largest an that has been found ?
Post by: Snowball 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
Title: Re: what is the largest an that has been found ?
Post by: Larry 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
Title: Re: what is the largest an that has been found ?
Post by: Snowball 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
Title: Re: what is the largest an that has been found ?
Post by: BP Wench 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...
Title: Re: what is the largest an that has been found ?
Post by: Gennysmom 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.  
Title: Re: what is the largest an that has been found ?
Post by: BP Wench on March 28, 2006, 11:09:24 pm
Kathleen I'm thinking Kay needs to join the Battywench cruise lines for a little fun! 
Title: Re: what is the largest an that has been found ?
Post by: Gennysmom on March 28, 2006, 11:16:11 pm
I think she deserves the biggest bar of chocolate to sculpt, thanks to Phylee-girl finding that FABULOUS article about chocolate and brain trauma.  Kay, it's all yours!
Title: Re: what is the largest an that has been found ?
Post by: BP Wench on March 28, 2006, 11:18:21 pm
Kay can have the biggest bar as long as I sitll get to dip matthew :o) 
Title: Re: what is the largest an that has been found ?
Post by: Battyp on May 25, 2006, 09:31:19 pm
I talked to a girl in my doctors office who's mom had a 7.0CM one removed years ago...
Title: Re: what is the largest an that has been found ? - 10cms ??
Post by: tony on May 26, 2006, 07:44:47 am
There was a guy from Canada (on the old list) about 18mths ago that was 10 cms
(almost an orange) amazingly he had very few symptoms
I dont know how it turned out.
At 10cm they cant just leave it - it really is only a matter of time before something
happens - its usually best to have your emergencies in a hospital where they are equipped to deal with them - rather than on a vacation, in a lift or a in burger bar..
Perhaps some of the veterans will remember him ?
best regards
Tony
Title: Re: what is the largest an that has been found ?
Post by: onebadass350bird on August 18, 2006, 07:57:11 pm
Here's one that scared the hell out of me when I saw it...26 year old female, 6cm

(http://image1.frappr.com/pix1/i/20060818/9/5/f/95f0b94d897af39671f32824a4e433850_medium.jpg)
Title: Re: what is the largest an that has been found ?
Post by: Raydean on August 18, 2006, 09:40:33 pm

OBA


Just dug Chet's old MRI out today, haven't done it in about 5 years. really brings back some strange feelings.  But his look alot like the one you just posted.  His was also 6 cm.

When my daughter is better (recovering from ankle surgery) I'll see if she can scan them . 

You know whenever I see a scan such as this,or  Nate's,& Paul's  I am amazed and realize how lucky we are to be living in this day and age, and in this Country with access to medical care.  I know in my heart that I'm a very lucky lady to have my husband here today.

Hugs
Raydean




Title: Re: what is the largest an that has been found ?
Post by: Kathleen_Mc on August 21, 2006, 06:10:40 pm
You know I never have asked the size of my orginal tumor, it just never occured to me but I remember clearly looking at it on the computer.....it was like this one here onebadass posted.......I should ask for a copy of my surgical report and see what it actually measured when they got in there.
It's funny, you would think as a nurse I would have asked all kinds of questions....I didn't, I didn't want to know. I remember very clearly looking at the image on the screen, saying "holy *&#*, I'm dead meat" (or something to that effect) the tech. handing me my neurologists phone number and calling him ,he was waiting for the call, apparenly he knew about the AN basically all day due to a test done earlier in the day and got the MRI scheduled Stat. and had the hospital staff make me stay for it I was tired and kept saying forget it I'm going home and then kept saying "just wait another hour and we'll have you in, it's scheduled for next week but if you stay we'll save you the trip next week". By the time I knew about the tumor my parents had already been told, the various neurosurg.'s around the city called to see who could do it the soonest (before I was dead) etc. When I went to see the surgeon the next week I really didn't hear much after he said "dead in a short time" to my asking if this could wait (or I might of said what if I don't have surgery), and him saying that I might not be able to walk/talk after surgery and might need to go to a rehab hospital for a few months. I don't even remember signing the surgical consent, I don't remember being told I would loose my hearing etc., I barely remember the ride home in the subway with my Dad. I clearly remember the fear....as a nurse I knew a lot and that was scarey.
Kathleen
Title: Re: what is the largest an that has been found ?
Post by: Crazycat on August 22, 2006, 12:15:26 am
Kathleen, you've been through alot!!

  That 6cm posted by Badass: WOW!!! Where did that come from? Is the girl that had that growth on this forum?

 I pray that mine doesn't decide to grow back. The doctors tell me that the incidence of this is rare. Well, it's not so rare judging from what I've been gathering on this forum!

              Paul
Title: Re: what is the largest an that has been found ?
Post by: ppearl214 on August 22, 2006, 07:41:22 am
Raydean, wasn't Chet's just about 6cm or did I miss that noted somewhere?
Title: Re: what is the largest an that has been found ?
Post by: Gennysmom on August 22, 2006, 09:48:06 am
Wow, Kathleen, I knew you had been through a tough one, but I think that's the first I've read from you that really explains it.  Congratulations on being here today, and making it through that rough of a surgery so long ago when technology wasn't as good.  You're a real hero on here that you're sticking around giving great advice and support.  Thank you!!!!!!!!
Title: Re: what is the largest an that has been found ?
Post by: Kathleen_Mc on August 22, 2006, 04:19:00 pm
Gennysmom: I stick around here, and the Canadian equal, as a way to stay "grounded" and to give to others....I figure this is the answer to my "why me" (constantly thinking that really burned up a lot of energy in the early years post initial surgery).
I have times when I need support and get it through these forums because I haven't anyone in my "family" except my husband who really "gets it" (and sometimes he can't get it either).
Kathleen