Author Topic: Confirmed. I have a booger in my head...  (Read 2750 times)

tenai98

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Confirmed. I have a booger in my head...
« on: August 28, 2008, 05:04:31 am »
Well the ENT confirmed what I already knew..i have AN in my left side...Here is what the report says. 14mm in AP diameter X 11mm in tranverse by 11mm in cephaiocaudal.   The ENT said he measure just a little differentely and said its .6cmX1.4cm.  We are going with the wait and watch mode for now. Another MRI in Feb/09 .  If it grows then we will consider other options... AT this point, I have seen ppl who have had surgery done in Toronto and Montreal, but have yet to come across someone who has had surgery in Ottawa Ont.  My ENT said he has been doing surgeries since 1990's...

JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

robynabc

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Re: Confirmed. I have a booger in my head...
« Reply #1 on: August 28, 2008, 06:20:04 am »
Hi,

I am sorry that you have this condition but some really good news is-  It is relatively small.  I am no expert on this but it seems like you would be a good candidate for CK or Gk.  But others on this board will know more about that. 

If you do elect to have surgery,  it is very important to pick someone who has done many, many surgeries.  Experience is one of the most important criteria among others.

I do know that this board is full of informative and caring and you will get tremendous support here.

Sending sunshine,

Robyn
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

Nicole222

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Re: Confirmed. I have a booger in my head...
« Reply #2 on: August 28, 2008, 01:30:21 pm »
I'm really sorry that your instincts were correct.  I'm glad you found this site, though.  It will be a wealth of information and support for you as you make a decision on your treatment options.  Best of luck to you.
Had surgery (retrosigmoid) May 9th, 2008 to remove a 3.5cm AN from left side.
Home one week later, no facial nerve damage. 
SSD -Left ear.
Thankful daily for fantastic surgeons and wonderful family and friends.
34 years old.  Married mommy to Jordan, 23 months.

leapyrtwins

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Re: Confirmed. I have a booger in my head...
« Reply #3 on: August 28, 2008, 10:49:11 pm »
I'm sorry to hear you have an AN, but I'm happy to officially welcome you to our "little group"  :)

Don't hesitate to lean on us for support, don't hesitate to ask questions, and don't hesitate to come here to just vent.  Being diagnosed with an AN can be shocking and stressful, even if you already suspected you had one.

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

Drake

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Re: Confirmed. I have a booger in my head...
« Reply #4 on: August 28, 2008, 11:49:34 pm »
I am really sorry to hear that.  I just found out this month that I have an AN also.  Just found this site a few days ago but it is GREAT!!  I haven't been able to say much but just being able to see and hear everyone's stories makes me feel not so alone.  Would just like to thank everyone out there and let you know that you are helping people everyday.  I know I really appreciate evryone here.  Best wishes and speedy recoveries to everyone.

sgerrard

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Re: Confirmed. I have a booger in my head...
« Reply #5 on: August 29, 2008, 12:06:39 am »
Hi Drake,

Welcome to the forum. Please feel free to post questions and comments - no need to be shy. Thanks for your thanks, too.

Jo, a formal welcome for you too, though you've been posting a bit already. I saw your MRI pic; it looked like an AN to me too. As Robyn said, it is small enough to consider radiation as well as surgery, if the next MRI shows growth. You have lots of time to explore all of that.

One more comment for both of you: ANs are benign and treatable, and most of the time it works out just fine.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: Confirmed. I have a booger in my head...
« Reply #6 on: August 29, 2008, 05:39:29 am »
Hey, Drake -

just wanted to say hi to you also.  It seems our numbers are growing every day which is sad since it means more AN diagnoses.  But on the other hand, the increasing number of members on this forum is a good thing since we're all here to help each other.  As Steve noted, ANs are almost always benign and definitely treatable, so hopefully that helps ease your anxiety a little bit.

If you haven't already thought of it, I encourage you to contact the ANA and get their literature; most find it extremely helpful. 

Don't hesitate to ask questions or look to us for advice - we're always happy to give that  ;).  We also like to have a laugh or two which I find helps "ease the pain"  ;D

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

mk

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Re: Confirmed. I have a booger in my head...
« Reply #7 on: August 29, 2008, 07:40:00 am »
Well the ENT confirmed what I already knew..i have AN in my left side...Here is what the report says. 14mm in AP diameter X 11mm in tranverse by 11mm in cephaiocaudal.   The ENT said he measure just a little differentely and said its .6cmX1.4cm.  We are going with the wait and watch mode for now. Another MRI in Feb/09 .  If it grows then we will consider other options... AT this point, I have seen ppl who have had surgery done in Toronto and Montreal, but have yet to come across someone who has had surgery in Ottawa Ont.  My ENT said he has been doing surgeries since 1990's...

JO

Hello,

I just wanted to give my two cents worth on the W&W that you mentioned. Sure, this is a good idea given the size of your AN. Also it is good to have another MRI to get a sense of the rate of growth.
However, given the glacial pace of the Canadian system, especially when you don't live close to a major centre, I would advise you to start the consultation process now. Don't rely on the advice of the ENT alone. It does take a few months to get an appointment with a neurosurgeon and also to get referred to one of the radiosurgery centres, if you wish to consult with them too (you should be a candidate, with this size). I definately wouldn't wait till February to begin my consulations. That way, you will still have plenty of time to research your options, consult with medical specialists etc. and then you can wait all you want.

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.

MAlegant

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Re: Confirmed. I have a booger in my head...
« Reply #8 on: August 29, 2008, 05:26:27 pm »
Yeah, one day you're fine and the next you're not.  It's a real kick in the gut.  However, 5 weeks later, I am doing great, recovering well and looking forward to a long and happy life.  You will be fine.  And we will all be here to help.
Best,
Marci

« Last Edit: September 03, 2008, 04:02:28 pm by MAlegant »
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

4cm in Pacific Northwest

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Re: Confirmed. I have a booger in my head...
« Reply #9 on: August 30, 2008, 08:36:45 am »
JO,

Glad to have you aboard the AN journey ship however I sorry for the reason you have had to join us. W & W is actually a good position to be in. (Mine was discovered at 4cm, vs. your 1.4 cm- so I did not have that many options- or time to prep myself.) Remember that typically AN tumors are slow growing.


I would recommend that from here you take really good care of you. Get yourself on a good healthy diet, if you are not on one already, get plenty of good exercise and reduce as many stress factors, in your life, as possible. My experience is that people who have taken care of themselves and are in good physical shape before any treatment seem to bounce back the quickest – in recovery. Because you are in W & W mode- having yourself in the healthy and fit category will put you in the head start category.

I went to one ANA meeting and there was a woman there whose tumor had done nothing, in growth, in the 7 years she has been in W & W. She appeared fit and out there enjoying life.

Take the time to connect with people @ support group meetings.

Here is a list of groups that meet there in Ontario and who to contact.
http://www.anac.ca/chapters.html

This way you can find out who the medical practioners worth seeking :)  are, and who is not  ???, - based on patient testimonies.

Keep moving forward and know there are many supportive people, here on the forum too, that are here for you.


DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

mallory

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Re: Confirmed. I have a booger in my head...
« Reply #10 on: August 30, 2008, 12:24:16 pm »
Hi Jo,

I'm sorry to hear about your news. I'm fairly new to this thing too, but I wanted to let you know that I'm in Ottawa and have had a pretty good experience with getting tests and referrals done quickly. I have a follow-up with the surgeon in a week or so, when I'm hoping to get a surgery date. I don't have a lot of info now, but I'm happy to let you know what happens once I know more.


Dana

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Re: Confirmed. I have a booger in my head...
« Reply #11 on: August 30, 2008, 12:49:56 pm »
Glad you all found this forum.  It's truly wonderful and calming.  Follow up on Jan's advice to get the brochures from ANA organization -- and thanks, Jan, for continuing to mention that whenever someone new comes aboard. 

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.

LADavid

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Re: Confirmed. I have a booger in my head...
« Reply #12 on: August 30, 2008, 03:48:52 pm »
Since I'm jumping on to this thread late, I belately wish each of you newcomers a welcome to a wonderful place to be at a difficult time in your life.  I know you will find here the caring and concern and the answers that I found as I went through a tough part of my life.  Best wishes on your journey.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments