Author Topic: newly diagnoised  (Read 6910 times)

annora.potter

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newly diagnoised
« on: January 05, 2010, 08:39:54 pm »
Hi my name is annora potter and my 16 year old daughter was just diagnosed on Monday. We r seeing a neurosurgeon on Friday after her hearing test to discuss surgery. This is recommendation because of pressure on the brain stem and size of the tumor. I would like any information you have that may help us thank you.

Annora Potter

leapyrtwins

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Re: newly diagnoised
« Reply #1 on: January 05, 2010, 08:46:25 pm »
Annora -

I'm sorry to hear about your daughter and I'd imagine that both you and she are pretty freaked out at this point, but things will be okay.  We have some young patients on the Forum, so you aren't alone. 

The possible side-effects of surgery are scary, but there are some wonderful outcomes.  I had surgery myself in May 2007, and while I was a lot older than your daughter (45 1/2), my outcome was very good.  My only lasting side-effect is SSD (single-sided deafness) and I have a BAHA implant that helps me with that issue.

First and foremost, I suggest you contact the ANA for their informational literature.  You'll find it very helpful and easy to read.  I personally think it's invaluable.

You say your daughter has seen a neurosurgeon, but I'd also like to recommend that she see a doctor who treats ANs with radiation - gamma knife or cyber knife - if her AN is small enough to warrant it.  The usual threshold for radiating ANs is 3 cms.

If you tell us what part of the country you are from, someone on the Forum may be able to suggest a doctor or doctors for you and your daughter to consult with.

Please feel free to ask us anything; it's part of what we're here for.

Best,

Jan

- I posted this response on your other thread also; wanted to make sure you see it.
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

annora.potter

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Re: newly diagnoised
« Reply #2 on: January 05, 2010, 08:53:00 pm »
Jan,

Thank you for your quick response. We live in Missouri and she is seeing a Dr at Children's Hospital which is connected with Barnes Jewish in St Louis, Missouri. I am thankful for your advice I think this is moving really fast. She was fine on Mon just having a routine exam and Monday evening we are tyring to decide about what I consider to be a major surgery. Alyssa has not complained of any hearing loss and is a gifted musician. We will know about her hearing on Friday. The Dr is concerned because her tumor is fairly large and pressing on her brain stem. NoT sure what all this means but it is what we know until Friday.

Annora

leapyrtwins

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Re: newly diagnoised
« Reply #3 on: January 05, 2010, 09:04:28 pm »
Annora -

Alyssa is a beautiful name.  My daughter's name is Alyssa and she's soon to be 14  :)

I'm in Illinois so I don't know any docs in Missouri, but I'll search the Forum for posts when I get a chance.  Although Alyssa's tumor is fairly large and things are moving fast, you should still take the time to consult with other doctors.  It is imperative that she has a doctor who has LOTS of experience in treating ANs - especially if her tumor is large.

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

Eli

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Re: newly diagnoised
« Reply #4 on: January 05, 2010, 09:29:41 pm »
Annora -

I'm very sorry to hear about Alyssa. I know from my conversations with my own mother how distraught you must feel. She confessed to me a few days ago that she broke down and cried every day from my diagnosis to my surgery.

I was diagnosed at the end of September 2009. My tumor was also putting pressure on my brain stem. In the end, I opted for a translab at the University of Iowa which was successful on December 11, 2009.

I echo Jan's suggestions, contact the ANA and get their informational literature. Education is your biggest tool in this fight. Learn as much as you can about your daughter's tumor and treatment options. Learn as much as you can about her doctors, surgeons, hospitals, etc.

I also echo the suggestion of talking to individuals who have had the treatments you're considering. They're living proof that their is life on the other side.

Annora, God is with you and Alyssa on this journey.

You both are in my prayers.

Eli.


Diagnosed - 09/29/09 with 1.9cm x 2.1cm x 1.7 cm right side AN - Like a huge Greek oliver in my head... Thus named Oliver...

Translab - 12/11/09 at UofIA Healthcare
Complete tumor removal. Facial nerve perserved.

Dealing with facial issues and wonkyheadiness now.

leapyrtwins

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Re: newly diagnoised
« Reply #5 on: January 05, 2010, 09:30:23 pm »
Annora -

here a link to a thread about docs in Missouri.  It's a few years old, but I'm sure these doctors still practice http://anausa.org/forum/index.php?topic=666.0

In the thread someone mentions Dr. Gantz @ the University of Iowa - he's Cheryl R's doctor and I've heard very good things about him.  

Hope this helps.

Please keep us updated,

Jan
« Last Edit: January 05, 2010, 09:32:40 pm by leapyrtwins »
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

CHD63

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Re: newly diagnoised
« Reply #6 on: January 06, 2010, 08:01:31 am »
Annora .....

I posted on your other thread, as well ..... and now I see on this one the answers to questions I had.

Because of the size of Alyssa's tumor, her age and her musical skills, I would also strongly suggest you seek additional opinions from doctors who have treated hundreds of ANs, not just a few in the course of their practice.  House in LA has the reputation for the most experience out there but there are many other skilled physicians throughout the country.  As far as I know, House will still give free evaluations if you send the CD of her MRI to them.  My surgery was done by a highly regarded neurosurgeon at Duke University in North Carolina and I had excellent results.

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

cyrmom2

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Re: newly diagnoised
« Reply #7 on: January 06, 2010, 09:02:08 am »
Welcome Annora.

Your daughter is much too young to have to go through this. Fortunately there are lots of resources on this site to help you make an informed decision. I too had a large tumor pressing on my brain stem.  99 percent is now gone thanks to two experienced and skilled surgeons. I have not updated my profile recently but my facial paralysis is a grade 1, was a grade 6. When it was a grade 2-3 most people did not notice it. 

Best wishes to Alyssa!!!!!! 

Hugs,
Cyndi
diagnosed 7-27-09 4 cm CPA
12 hr translab 8-25-09
Dr Chicooca & Dr Welling at OSU/The James
sliver of tumor remains on brain stem
left SSD & facial paralysis (was 6/6, 2-3/6 at 9 weeks, 1/6 within 4 months) 6 month MRI on 3-17-10.

pjb

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Re: newly diagnoised
« Reply #8 on: January 06, 2010, 09:18:32 am »
Annora,

My prayers are with you and your daughter I have also been seeing so many younger people with this please just take a moment I know it must be shocking news for you but do as much research in all the options for this tumor and most definitely find the best surgeon possible that is well known in treating this specific type of AN. Jan and Clarice has given you excellent advice and please think about what they said they are very informative in this journey that it seems alot of us are going through.

My thoughts and prayers are with your daughter,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Tod

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Re: newly diagnoised
« Reply #9 on: January 06, 2010, 11:48:29 am »
Annora,

I am new here as well and I wish you and your daughter the best. Having lived in St Louis, and worked at SLU, I encourage you to make sure you check your options with both med schools and their hospitals for additional guidance. However, it may well turn out that the best advice you get can be found here. I have found a  lot of help already this week.

best of luck,

Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

JSC

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Re: newly diagnoised
« Reply #10 on: January 07, 2010, 09:29:45 pm »
Hi Annora,
I am sorry you are in this position.  I can relate to this.  My daughter was diagnosed with a facial nerve schwannoma at age 16 in 2002.  Although we were initially told it was an acoustic neuroma, we later learned it was cranial nerve #7 instead of #8.  I spoke with, e-mailed and sent MRI films to a number of physicians across the country and I recommend that for anyone going through something like this.  After the watch & wait period of 5yrs., she had GK - Dr. Slattery - Good Samaritan in Dec. 2007.  No, the road was not always easy and often times it was very difficult.  I am here to tell you God carried us through the entire ordeal and life is better than we could have ever imagined.  Danielle graduated from college in May 2008, made a beautiful bride this past summer and we thank God every single day! 
I'm keeping you and your entire family in my prayers!
Jan C.

annora.potter

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Re: newly diagnoised
« Reply #11 on: January 08, 2010, 03:45:57 pm »
Thank you for all your wonderful advice. thanks to this sight I went to an appointment well informed. We got some good news today. Alyssa has all of her hearing still intact. This and some other symptoms she is having is leading the Dr's to think that the tumor is attached to her 5th nerve instead of her 7th or 8th. She will still require a long and tedious surgery. We are looking at around the 1st week in Feb. Thanks again
Annora

leapyrtwins

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Re: newly diagnoised
« Reply #12 on: January 08, 2010, 10:35:59 pm »
Annora -

glad things are falling into place.  I'm curious about the tumor being on the 5th cranial nerve.  Did the doctors say if there is a possibility Alyssa's tumor might not be an acoustic neuroma but another type of tumor?  My tumor was on my 7th & 8th cranial nerves, which I believe is more common for ANs.

Did the doctors tell you the size of the tumor?  And if it's classified as large, did they explain that debulking is an option?

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

jaylogs

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Re: newly diagnoised
« Reply #13 on: January 08, 2010, 10:44:37 pm »
Annora...I just had mine taken out about a month ago.  On my last day in, we met a couple who had a daughter that was your daughter's age.  They didn't know a lot about what was going on, so they were naturally very upset about it all and very nervous.  You came to probably the best place here for information.  It will undoubtly get overwhelming at one point, with so much information out there.  Just know when you do make a decision and if it feels like a good one, then it'll be the RIGHT one.  Continue to keep asking questions and vent, because we've all been there or going through it and totally understand.
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

 


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