Author Topic: HELP!  (Read 6621 times)

Vivian B.

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HELP!
« on: March 05, 2009, 11:18:45 am »
I have been recently diagnosed with an acoustic neuroma 8mm. I have been frozen in time since I received the news. I am very worried about the surgery. Can anybody please provide some input. Thank you.
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Pooter

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HELP!
« Reply #1 on: March 05, 2009, 11:55:31 am »
Hello again Vivian..

Just curiosity, but at 8mm size, why surgery?  Your well within the size limitation of what's generally considered for radiation.. It sounds like you've decided that surgery is the only option for you..  Was that your decision or the doctor's treating your AN?  More information is needed about your particular case in order for us to adequately help..

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Vivian B.

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HELP!
« Reply #2 on: March 05, 2009, 05:36:40 pm »
Hi Marianne and Brian,

So far I have seen my ENT and had an MRI done. I am waiting to see a Surgeon. The wait time for a good surgeon in Toronto is about 2 months. In the meantime I have read so many horror stories about this surgery on line that I don't know what to think anymore.  I thought that radiation was only for non-surgical candidates and I also thought that radiation does not completely remoe the tumour. Any thoughts?

Vivian. 
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Vivian B.

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HELP!
« Reply #3 on: March 05, 2009, 05:51:29 pm »
Hi Marianna,
 
Marianna,sorry, I spelled your name wrong and didn't answer all of your questions. I do have symptoms, ear ache and buzzing, some dizziness all anoying but I was managing prior to knowing what I had. Also I wanted to ask you if you are from Toronto.
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Vivian B.

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HELP!
« Reply #4 on: March 06, 2009, 08:34:03 am »
Hi Marianna,

Thank you for all your support. I have been frozen since I found out. I haven't even been at work for the whole week. Keep on thinking of the surgery if I need one and how complicated it sounds. Everyone on this forum has been so helpful and it's good to know that there are some from Canada as we can discuss doctors. Thanks again for replying.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

calimama

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Re: HELP!
« Reply #5 on: March 09, 2009, 07:19:55 pm »
hey Vivian...

Sorry i am not around here so much, but still trying to do my part.

I am TO and had surgery last June... for a much bigger tumor. I was deadset against surgery due to the "horror" stories you describe (and i could even say i lived through!). Surgery followed MONTHS of research, questions/advice, doctors. I had surgery at Toronto Western Hospital.

I am happy to answer any questions you have, please feel free to send me a PM.

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

leapyrtwins

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Re: HELP!
« Reply #6 on: March 09, 2009, 07:49:59 pm »
Hi, Vivian and welcome to the forum  ;D

There are horror stories about surgery, but there are also many, many success stories; so if you ultimately decide surgery is for you don't let the horror stories scare you.

I'm not sure what defines a "non-surgical" candidate in your eyes, but usually an AN your size means that you could have either surgery or radiation.  My AN was larger than yours and I was given the choice. 

You are correct, radiation does not remove the AN; it causes necrosis (tumor death).  I am the type who wanted to have my AN removed, which is one of the reasons I opted for surgery, but lots of patients choose radiation and they are just fine with leaving the tumor inside of their head.

Treatment is pretty much a personal choice, but you need to do your research first.

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Vivian B.

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Re: HELP!
« Reply #7 on: March 10, 2009, 11:24:54 am »
Hi everybody,

I saw the surgeon today. It turms out that I have a meningioma in the trigeminal nerve. The surgeon wants me to see a Neurologist first before making any decision. He said I can wait as well. I am even more confused now than I was before. The meningioma is sitting on the facial nerve but seems to be a little deeper than if it was an AN. That is why it's causing symptoms even at it's small size. I can't seem to find much information about meningiomas on line. Any suggestions?

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Jim Scott

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Re: HELP!
« Reply #8 on: March 10, 2009, 11:50:18 am »
Hi, Vivian:

I was dismayed to learn that you have a meningioma but apparently your doctor is not overly alarmed if he told you that you can wait on treatment, which will likely be surgery.

I'm not all that knowledgeable regarding meningiomas but I'm sure others are and/or will offer you links to informative websites.  Here's hoping we can help alleviate your confusion.

Jim

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.

Vivian B.

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Re: HELP!
« Reply #9 on: March 10, 2009, 12:12:12 pm »
Hi Jim,

The treatment for the meningioma sounds a little more complicated than that of the AN as it is further in. The surgeon suggested that I speak to a Neuro prior to deciding on surgery. He did mention the Neurol. would discuss radiation as well. Can I ask why you think surgery would be the only option?

Thanks.
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

mk

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Re: HELP!
« Reply #10 on: March 10, 2009, 02:35:15 pm »
Vivian,

I think that meningiomas are actually more common that acoustic neuromas. There is a whole group on this, with a discussion forum http://www.meningiomamommas.org/. You should check it out.
From what I understand the treatment options are pretty similar for ANs and meningiomas, but I may be wrong. Their location can vary a lot, which would also dictate the treatment choice. Being on the trigeminal nerve can probably cause similar problems as a Trigeminal neuroma (Marci had one).
You can also check out about radiation treatments for meningiomas at the Cyberknife forum  http://www.cyberknife.com/Forum.aspx. The drs. there can provide valuable input.
In the meantime you are welcome to hang out here  ;)

Marianna

GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Vivian B.

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Re: HELP!
« Reply #11 on: March 10, 2009, 06:54:10 pm »
Hi Marianna,

Thanks for your input. How do I get in touch with Marci?

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

mk

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Re: HELP!
« Reply #12 on: March 10, 2009, 07:41:02 pm »
Oh, sorry, she appears with the name MALegant. She posts here very frequently.  She had surgery for a trigeminal neuroma. Marci where are you?
By the way, neuromas and meningiomas appear sometimes very similar on the MRI, and the surgeons are not able to differentiate until they actually send them for analysis after removal.
Michelle (minmoore) actually thought for a while that her AN was a meningioma, and she mas mentioned that she did some research on them. She is also from Toronto.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Keeping Up

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Re: HELP!
« Reply #13 on: March 10, 2009, 07:59:31 pm »
Hey Vivian

Glad you got some answers - I know not much beyond intracanicular, asymptomatic ANs - so will turn you lose on the rest of the board.

Ann
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

Vivian B.

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Re: HELP!
« Reply #14 on: March 13, 2009, 09:02:52 am »
Hi Marianna,

One question came to mind. How did you come to the decision of having radiation only and not surgery?

Vivian.
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.