New AN

[cathyt]

Just discovered this tumor in Oct. still waiting to see specialist.  That will be on Dec. 23.  I have almost no hearing in left ear, daily headaches, nausea sometimes I have to take gravol or something like it to eat.  I feel like I am in a fog all the time now before it was once in awhile.  Found this forum while surfing the net information is great.

[tenai98]

Hi and Welcome to the forum Cathy.
there is a wealth of info on here and if you have any questions, ask away
JO

[cathyt]

Hi Jo
I am going to Sunnybrook Hospital in Toronto.  How long does it usually take before they start treatment.  Mind is 2.5x1.5.  I assume I will need some form of treatment.

[CHD63]

Hi cathyt and welcome to this forum.  Sorry you are having to wait another month to see a specialist, while dealing with troublesome symptoms.  In the meantime, you are doing the right thing to research everything you can about acoustic neuromas.  You can even send your MRI to several different excellent facilities for a free evaluation and recommendation for treatment.  If interested, ask and others will chime in with where to send them.

In the meantime, if you have not already done so, send for the free ANA materials.  http://anausa.org/sc/apps/forms/forms.cgi  They contain a wealth of reliable and reassuring information.

If you have specific questions, be sure to ask and someone will share their experience.

Many thoughts.  Clarice

[yardtick]

Hi Cathy,

What are the chances two people from Ontario would welcome you.  Welcome.  There are several of us here from Ontario and we also have a few from Canada's west.  So sorry to read you are suffering from daily headaches and some nausea.  Hang in there Dec 23 is just around the corner.  

Anne Marie  

  

[Tumbleweed]

Welcome to (y)our forum, Cathy. If you have any questions, ask away. We're hear to help.

FWIW, I advise that you explore all the treatment options that are open to you. I had my own deep biases (against radiation) when I was initially diagnosed. But the more I looked at the treatment I was most opposed to, the more I became convinced it was the best type of treatment for me personally. Leave no stone unturned and keep an open mind to surgery, CyberKnife (CK), GammaKnife (GK) and FSR radiotherapy. Get multiple opinions from doctors who practice the different types of treatments. After exploring all your options, you will know in your gut which is right for you.

Here are some of the leading doctors (specialists in treating ANs) who will review your MRIs and other tests and give you their recommendations for treatment (you don't need to be their patient):

Dr. Brackmann of House Ear Clinic (Los Angeles, California) will review your MRI and give you his consultation for free over the phone. He developed many of the modern techniques in brain surgery.
Dr. Steven Chang (esteemed neurosurgeon and CK practitioner at Stanford University Medical Center in California; my doctor) will also review your MRI and give you his consultation for free. His email is: sdchang@standford.edu. Dr. Chang has probably treated more ANs with CyberKnife than anyone else in the world. Doctors travel from all over the world to Stanford for their CyberKnife training. CyberKnife was invented by Stanford's Dr. Adler and CK has been in use at Stanford for at least five years longer than anywhere else in the U.S.
You can also get a free consultation by contacting the University of Pittsburgh Medical Center, which has practiced GK longer than any other facility (for over 40 years) in the U.S.

Good luck!

Best wishes,
TW

[cathyt]

Hi thank you all for all your support.
I tried to get the information package from the ANA but was unable, maybe because I'm from Canada.
But just reading through their website was helpful. Hopefully going to my first appt. I will be well informed by then and know
what they are talking about.

[mk]

Hi Kathy and welcome from another Ontarian.

Who are you seeing at Sunnybrook? Make sure to ask for references to get additional opinions. First of all ask for Dr. Rutka. He is a neurotologist, highly specialized in ANs. He can assess your case and direct you accordingly. He is a surgery type though, probably not favourable to radiation.
Also try to get a referral for the GK centre at Toronto Western. There you will be assessed by a neurosurgeon and a radiation oncologist.
In Ontario sometimes doctors are not straightforward about their expertise and they may not provide further referrals, unless you explicitly ask for them.
There are many in this forum who have consulted with doctors in the Toronto area, so I am sure they will chime in soon.

Marianna

[cathyt]

Thank you Marianna
i am seeing Dr. Nedzelski in Dec  Nice to know people who have seen these doctors.  You you know how long it takes to see these physicians in the first place.  Do they really give you options or just ell you what to do?

[opp2]

Ditto what Marianna said. Hi I'm Nikki and I too had consults at Sunnybrook and TG/TW. I also had a radiation consult at TG. I was diagnosed April 14, 2009. It took me about 6 weeks to get to see the first Neurosurgeon at Trillium at Queensway and he sent me to his partner at Sunnybrook (another 6 weeks). Then we booked surgery for Sept 4th. I subsequently cancelled that surgery and went for a few more consultations. I finally had surgery this past July. My journey took a long time because of me though. It's been my experience in during my research that it seemed to take an average time frame from your consultation to your surgery, with an AN your size about 3-4 months.

I'm really sorry that you aren't feeling well. Been there with you and I wish there were something I could tell you that might make you feel better. And this may help you feel better emotionally-this is not an emergency situation where you need to feel forced to have surgery or treatment right now. You have lots of time to make your decisions. There are a few cases of folks where the AN did become a life threatening emergency and it seemed to me those folks had really large AN. There is an AN support group meeting tonight in Toronto at the Spadina location. I can't make it because a) I don't have a sitter and b) I have a really awful cold I don't want to pass on.

It may help you if you can make it to the meeting. I am making a huge assumption here thinking that you live 'closer' to Toronto because you are seeing a surgeon there. 


Toronto
Meetings will be held every other month from 6:30 pm to 8:30 pm in the North Boardroom on the 2nd floor at the Canadian Hearing Society, located at 271 Spadina Road (Dupont subway station). Free parking.

2010 Meeting Schedule – January 26th, March 30th, May 25th, July 27th, September 28th, November 30th.

I'm not sure if you've been to the ANAC site, here is a link. I hope that is ok Jim and Phyl ??

http://www.anac.ca/index.html

[cathyt]

Thank you Niki
I am closer to Hamilton area so about 1 hour or so away from Toronto.  Don't think can make tonight but will keep the Jan date in mind.
If you don't mind me asking, you could of had either radiation or surgery?
What made you choose surgery?  I realize it is a very personal choice.
I have been on ana.ca site that is how found this site.  Was unable to join on line.  Need to mail application in.
Cathy

[yardtick]

Hi Cathy,

From what I understand Dr Nedzelski is very knowledgeable, I think Vivian has seen him.  Were you referred by your family doctor or by an ENT? 

Anne Marie

[Lizard]

Cathy,
Just wanted to extend a warm welcome to you!  Hang in there you will find relief soon.
Liz

[opp2]

Thank you Niki
I am closer to Hamilton area so about 1 hour or so away from Toronto.  Don't think can make tonight but will keep the Jan date in mind.
If you don't mind me asking, you could of had either radiation or surgery?
What made you choose surgery?  I realize it is a very personal choice.
I have been on ana.ca site that is how found this site.  Was unable to join on line.  Need to mail application in.
Cathy

No I don't mind. The radiation folks actually turned me down. My tumour was putting a lot of pressure on my brainstem and they felt that with the size and location that radiation was not a good option, et voila! surgery.

[mk]

  You you know how long it takes to see these physicians in the first place.  Do they really give you options or just ell you what to do?

It takes some time to get the first referral, but once you are in the system things happen faster. It also depends on how urgent they judge that your situation is. For small ANs they typically recommend wait and watch. With an AN of your size, they will probably take it seriously, especially because you have symptoms.
As for giving you options, if pressured they will provide more referrals. Don't accept anyone to "tell you what to do". You need to be as informed as possible.  Insist to get more opinions. If you feel that radiation might be an option for you, ask for a referral to the GK centre. Even if you don't really want to do radiation, this place is full of neurosurgeons who can give you a second opinion.

Let us know how the appointment with Dr. Nedzelski goes. Make sure you look at the lists for questions to the doctors that you can find posted on various threads.

Marianna