ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: Vivian B. on March 05, 2009, 11:18:45 am

Title: HELP!
Post by: Vivian B. 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.
Title: HELP!
Post by: Pooter 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
Title: HELP!
Post by: Vivian B. 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. 
Title: HELP!
Post by: Vivian B. 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.
Title: HELP!
Post by: Vivian B. 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
Title: Re: HELP!
Post by: calimama 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
Title: Re: HELP!
Post by: leapyrtwins 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

Title: Re: HELP!
Post by: Vivian B. 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
Title: Re: HELP!
Post by: Jim Scott 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

Title: Re: HELP!
Post by: Vivian B. 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.
Title: Re: HELP!
Post by: mk 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

Title: Re: HELP!
Post by: Vivian B. on March 10, 2009, 06:54:10 pm
Hi Marianna,

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

Vivian
Title: Re: HELP!
Post by: mk 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
Title: Re: HELP!
Post by: Keeping Up 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
Title: Re: HELP!
Post by: Vivian B. 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.
Title: Re: HELP!
Post by: mk on March 13, 2009, 10:04:50 am
Vivian,

There were many reasons for this decision. Although I should say that at the time of my decision I was not really following this forum - so I didn't really realize that most people tend to chose surgery, especially for ANs my size. My doctors kind of treated this casually, "oh, there is no urgency" and I was told that I was a candidate for radiation.
Anyway, it mainly had to do with logistical reasons. I have two little ones, a very demanding job, and no other family in proximity (all family is overseas). I knew that with surgery I would need LOTS  of help during the recovery period. And as everybody knows here, it is not only the first 4-6 weeks, but it can be ongoing in some cases. I was especially afraid about debilitating headaches, diziness etc - my main concern was taking care of the kids. I was (and still am) essentially symptom-free, and I wanted to keep that as much as possible.
Another important factor was the proximity to specialized care. I would most certainly need to travel to a major centre, like Toronto, to get treatment, since there aren't any specialized surgeons here. This again would be a problem with kids etc, especially if there were complications. And, even after surgery, people often need access to specialists, who again would not be available here. So I envisioned months of having to travel around to get good access to specialists. Finally, I was just coming back to work from my second maternity leave - my job is demanding, having to lead a lab, direct people etc - going off for another leave would be pretty much a disaster at that point.
Things have worked out very well until now, with no complications and not a single day missed at work and I am hopeful about my upcoming 1 year post-GK MRI. I realize that in the long term I might end up needing surgery, but I was hoping that I could delay this as much as possible, until the kids are a bit older.

Feel free to PM me, I would be happy to share more details and any other information.

Marianna
Title: Re: HELP!
Post by: Vivian B. on March 13, 2009, 10:12:34 am
Hi Marianna

Thanks for your input. I guess I will have to dixcuss all the options with the Neuro. I see him on Tuesday. I just received a call to confirm the appt. The reason why I am considering it if an option is that mine is a liittle deeper than your regular AN and the facial nerves will be destroyed during the surgery as well as complete hearing loss. I am too concerned about recovery period and work. My kids a liittle bit older, but regardless of age they always need you. I have heard some good responses on the radiosurgery. You may never need surgery. The radiation stats. have been pretty good. I hear that some surgeries also result in regrowth over a period of time, so I don't think your chances are any less than if you would have had surgery.

Thanks again.

Vivian.