Author Topic: Glad I found this site  (Read 2480 times)

HCSTARWIND

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Glad I found this site
« on: November 03, 2007, 08:52:26 pm »
Hello
 I am new to this site and am very glad I have other AN support here. I was diagnosised last year, actually in 2005 with a small an in the left IAC. I also have mixed hearingloss, probable otosclerosis in the same side. My AN has grown slowly . Now it measures 5.5x3.9mm. I am however experiencing facial symptoms, numbness and tingling especially in my lip. I am being monitored for the AN with MRI's. Next one is in the spring of 08. I have gone through alot of emotional up's and down's since this diagnosis. I am 57 years old and a RN. Sometimes knowing alittle is scary. I want to be well informed . My question is how long do I wait before doing something. If it grows I will lose my hearing on that side. Also I will be older. With my facial symptoms I am concerned that I will lose my facial nerve function. I will continure to watch and wait. I am seeing a neurologist this next week to see if there is another reason for the facial symptoms. Any suggestions. Helen
Dx, AN left IAC, 3x9x2x3mm. Now 5x5mm , Nov. 07. Watch and wait for now.

Charlotte Lady

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Re: Glad I found this site
« Reply #1 on: November 03, 2007, 09:35:14 pm »
Well.  I can't make the decision for you but as my surgeon pointed out "It's not going to go away.  It's not going to get smaller.  There's nothing to gain watching and waiting".  Of course, my situation may be different than yours.  I'm in good health, young (50ish) and active.  I don't know where you live but certainly find a neurosurgeon and EENT who have experience in this type of tumor/surgery.  You may have to travel to another city.
Good luck and keep posting
Donna
1.5 cm AN removed 9/25/07.

Lorenzo

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Re: Glad I found this site
« Reply #2 on: November 04, 2007, 01:10:26 am »
watch and wait is good for making time to find out information and make decisions. I would say if you have symptoms at that size and they are increasing, then I would think something is up, possibly growing? Your AN is very small by the sound of it. Have you considered radiosurgery? The facial symptoms might just be temporary as the nerves adapt. I had that before treatment, and that's what made me decide to go for treatment and stop the wait and watching the doctors suggested I should continue to do. I am glad I did, the AN had grown and was very close to the maximum size of CK treatment. Symptoms stopped shortly after making the decision to go for treatment.
My doc told me at the time, why wait for CK until you can't do it or it's much larger. Better to do it when the AN is still smaller, that way if there's swelling (there was post CK, it shrank back a lot since) there's more space for it to swell in! Made sense to me.

Good luck.

Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

cheza

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Re: Glad I found this site
« Reply #3 on: November 04, 2007, 08:28:32 am »

Hi Helen

I agree with lorenzo if the AN is causing you these problems why wait you know its there and it isn't just going to vanish one day (all though we all wish it would) you may aswell start thinking along the lines of how to get it out look at all the options you've got time yet to really concider what is right for you, listen to your doctors, surgons, ENT's etc... but make sure you tell them what you want its your body after all, all I'll say is do your research! there are plenty of sites just don't scare yourself everyone is different, take me for example my AN is 3cm, probably a bit bigger now, I go in for surgery on friday, but my symptoms are moderate they are there but not enough to have caused grave conceren, infact if it wasn't for the fact that they have become more noticable over the last 8 months I wouldn't even know I have an AN only, real give waway is the fact I can't hear anything and have harsh headache's but who doesn't get the occasional headache?

sorry if I'm being very "matter of fact" but sometimes it helps to be like that.

take care and keep us posted

cheryl XxX 
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

Dana

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Re: Glad I found this site
« Reply #4 on: November 04, 2007, 12:09:39 pm »
Dear Helen,
I agree with Lorenzo and the matter of fact analysis his doctors gave.  By the way, I believe I'm right that Chang at Stanford, who Lorenzo went to, is considered a very good, experienced AN doctor - more reason to take advice more seriously.

I had GK three months ago on 1.5 cm AN.  Although my symptoms have been minimal, I am experiencing them, and I think it's fair to assume that symptoms (balance, hearing and tinnitus) are worse because AN is swelling in response to GK.  I know from looking at original MRI that my 1.5 cm AN was j...u...s..t touching parts of the brain, so it makes sense that if it's swelled, it's now pushing on brain parts.  So.... it struck me as particularly true that one might as well do radiosurgery-of-your-choice while AN is tiny; that way it can swell and be less likely to push on brain parts. 

.... my two cents worth ....
Stay strong,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

Jim Scott

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Re: Glad I found this site
« Reply #5 on: November 04, 2007, 04:19:52 pm »
Hi, Helen:

I'm glad you visited the site, although I'm sorry you have a reason to do so.

Your AN is very small and so, watching and waiting is not unreasonable.  However, if you're experiencing symptoms as you've described, I would assume the tumor is encroaching on the facial nerve.  As others have noted, we can't know this for certain, but it is very likely growing and as it does, more nerve damage is quite possible.  The prudent thing to do is start planning on either surgery or radiation treatment, depending on your doctors advice and your preference for these respective treatments.  Your doctor will give you medical advice and of course, you'll make your own decision on what to do from this point on. 

I would consider trying to move up the date for your scheduled MRI scan and if it shows that the tumor has grown, search for a surgeon you can feel confident with and schedule surgery or radiation, if you prefer and your doctor agrees.  The point is that your symptoms are not likely to improve.  That means the growing AN tumor is impacting delicate facial nerves that take a long time to heal, once compromised.    In some cases, especially regarding hearing, the nerve damage is irreversible, as we can collectively attest. 

I hope your AN has not grown, but waiting to address it won't help the ultimate outcome.  As for age, I was a healthy 63 when I had my large AN surgically cut down, then radiated.  The result was outstanding.  Because of the small size of your AN, I would surmise that radiation may well be the recommended procedure used to address it.  As you know, radiation is non-invasive and much easier on the body than surgery.  Although it can manifest some of the same complications as surgery, CSF leaks, infection and other risks are minimized. 

Again, your physician and your own preferences will ultimately determine the path you take but whatever that may be, know that you'll always receive support here.  Don't be a stranger.  :)

Jim
« Last Edit: November 05, 2007, 04:25:57 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

HCSTARWIND

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Re: Glad I found this site
« Reply #6 on: November 04, 2007, 10:28:46 pm »
Hi  everyone
 
Thank you for all your suggestions on the watch and wait on my tumor. I have not been encouraged to go with ck or gk radiation because of the facial symptoms I've been experiencing. There have been concerns that this may be a lipoma which would be a more infiltrative tumor. I wish I had a definite answer. I have seen an experienced Neurotologist in Mass. Also experiencing BPPV in my Rt. (opposite ) side. Vestibular rehab. has been helpful. I'll stay tuned. Take care and God Bless. Helen
Dx, AN left IAC, 3x9x2x3mm. Now 5x5mm , Nov. 07. Watch and wait for now.

Victoriah1999

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Re: Glad I found this site
« Reply #7 on: November 05, 2007, 10:05:15 am »
I must agree that if your symptoms are increasing then it's time to do something.  As for it being small, well, it seems your took up a bad place, so yours falls in the "small but mighty" category, right?  hehe

Keep us posted, I'd really like to know how you are progressing.

Best,
Victoria