Author Topic: My formal introduction from the FNG  (Read 3539 times)

Amplified2000

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My formal introduction from the FNG
« on: December 20, 2009, 01:21:37 am »
Hello everyone, my name is Kevin. In order to understand my current situations I need to explain a bit about my past.. medically as it were.

In 2007 through a tour of various general practitioners, ENT's, cat scans and MRI's I was found to have a very large tumor in my skull base/neck area. As it turns out this was a Neuroma growing from the cells of the 10th cranial nerve and it needed to come out.

I ended up in the office of Dr. John Leonnetti over there at Loyola University Hospital.. he came highly recommended by one of my other ENT's along the way.. he was short and quite tan but he appeared to be well respected and he certainly spoke that he knew what he was doing.

Surgery for removal of the tumor was scheduled for May of 2007 with Leonetti and a Dr. Zender performing this one time only show at Loyola University Hospital.. the initial surgery went pretty well, 9 hours or so and I'm in recovery with enough tubes and wires coming out of me to build a short wave radio. Anyway 5 days go by, I'm eating liquid love thru a tube in my nose and they send in the swallow test to see if I can go home and finish up my recovery there. Things look good but I seem to have a bit of a fever.. but they send me home anyway.

Now this is where the story gets interesting, less than 24hours after being discharged I'm in the ER at Loyola fighting for my life.. high temperature, trouble breathing, all that fun stuff. Long story short is a MRSA infection in not only the surgery site but in my lungs as well. 7 days on a ventilator and 23 days in the ICU to go along with 2 additional surgeries to clean up the infected tissue. Finally get to leave this time with my brand new g-tube so that I can eat because a full on case of Dysphagia has set in and I am unable to swallow anything. This continued for about 3 months until a successful swallow study was done and I get back on regular food.

Once life had returned to pretty much normal we return for our "last" follow up visit with dear Dr. John Leonetti only to hear from him the following "While we were prepping for your first surgery we noticed this on the MRI scan.. you have an Acoustic Neuroma as well"

And that my friends is how my AN journey started.. I wasn't really ready for another one quite so soon after the last but hey..

Because of everything that happened and how it went down I will not be allowing Dr. John Leonetti or anyone else in the Loyola University system go near me again.. ever. I have begun to get a first assessment from Dr. Wiet whom I found thru the ANA right here. So far I like him even tho we are still in the testing faze.. I will have more information to share when I know but at last look from the MRI at Loyola I'm likely looking at a AN in 10-15mm range on the left side and based off my hearing tests there is a possibility of another AN on the right allowing me to join the prestigious group of folks here who are NF2 positive.. only time and a few tests will tell.

I'm sorry to have no delivered one of the more upbeat and poppy introductions this forum has likely seen but I'm feeling a bit overwelmed and a little sorry for myself right now... 1 tumor.. ok I can deal with it..2 tumor's.. well crap that stinks but alright I've done this before.. 3 tumors is just why does this keep happening!

I look forward to hearing about so many others experiences and trying to use them to help me thru mine.

Thank you for listening,

Kevin - Bolingbrook IL
10th Cranial Nerve Neuroma - 4.6cm x 4.2cm x 6.8cm - Removed 5/08 by Dr. John Leonnetti @ Loyola University
AN - Left IAC - 20mm x 9mm x 11mm - 2/10
Mid-Fossa - Dr. Friedman @ HEI on 3/3/10
Total removal, only mild hearing loss.. did have a CSF leak but they fixed it :)
Home recovering :)

saralynn143

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Re: My formal introduction from the FNG
« Reply #1 on: December 20, 2009, 10:50:49 am »
Kevin I'm sorry to hear about all of the extra stuff you are having to go through. It isn't much comfort to know that extreme side effects are rare when they happen to you.

I wish you all the best for whatever is upcoming.

Best,
Sara

P.S. I can't figure out what FNG means?

MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

lori67

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Re: My formal introduction from the FNG
« Reply #2 on: December 20, 2009, 11:40:02 am »
Hi Kevin and welcome!

Wow - that was a heck of an experience you had!  I would definitely be feeling overwhelmed if I were in your shoes.

I don't have a lot of advice to offer on NF2, but I know there are others who will chime in here and be a wealth of information for you, if in fact that turns out to be the cause of your tumors.

Feel free to vent all you want - no one expects you to be upbeat all the time, but we'll do our best to help you feel upbeat at least some of the time!   ;D

Good luck to you!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: My formal introduction from the FNG
« Reply #3 on: December 20, 2009, 12:32:58 pm »
Kevin~
Not all of us great success stories to tell but I believe it is all in how we live our lives AFTER we get thru all the complications!  You have already been thru the ringer and I am sorry it seems like you have more challenges yet to come...the best thing about this Forum is we are all here for you - no matter if you are having a good day or bad.  I don't have NF2, but I know others will pipe up soon.  Please ask any questions - that is what we are here for!

K

PS ~ You need to talk to Jan "leapyrtwins" - she is from the Chicago area and I think she would have VERY good advice about the Dr's she used there - I think I have heard her mention Wiet..
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: My formal introduction from the FNG
« Reply #4 on: December 20, 2009, 02:00:58 pm »
Hi, Kevin.  Welcome to the Forum; wish you would have found us sooner.

Dr. Richard Wiet is a very, very experienced doctor and you are in wonderful hands.  He has been treating ANs for numerous years and, in my opinion, he is definitely the guy in the Chicago area that you want to see.  I'm sorry you weren't referred to him in the first place; but I'm glad you are a patient of his now. 

I am a patient of one of his partners (Dr. Robert Battista) and I always highly recommend the Ear Institute of Chicago to others with ANs.  I have sent numerous AN patients there since I was referred to Dr. Battista (back in 2007) and I don't know anyone who has been unhappy with my recommendation.

Please feel free to PM or email me - you'll find my email address in my Forum profile.  I am also on the ANA's WTT (willing to talk) list if you'd like to reach me by phone.

Best,

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

Jim Scott

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Re: My formal introduction from the FNG
« Reply #5 on: December 20, 2009, 03:11:55 pm »
Hello - and welcome, Kevin.  

I'll assume FNG is an acronym for 'Friendly New Guy'.

As we often state to those just receiving a diagnosis of an acoustic neuroma: I'm sorry you have a reason to be here but glad you discovered the ANA website and posted on the forum.

Your experience with Dr. Leonnetti and Loyola University Hospital is clearly horrific and I can easily understand both your anger and frustration with both.  I'm pleased to learn that you've basically recovered from that episode but receiving the news about the AN and then, possibly another, has to be discouraging, to put it politely.  Or, in the vernacular: this really sucks.  

Of course I hope the upcoming tests prove there is no second AN.  Our 'NF2 club' doesn't need any more members but then, no one really gets to choose whether they'll be joining that club, or not.  

Fortunately, when it comes to dealing with ANs, the folks that populate these discussion forums are knowledgeable, compassionate and eager to help.  They also have a well-honed sense of humor, which, as you obviously realize, is crucial in dealing with this kind of medical complication.  I think you'll be pleased with the response your post brings.  This is a very active forum and you won't have to wait days for a reply to almost any question.  We're not doctors and cannot offer actual 'medical' advice but we have a wealth of practical experience in handling acoustic neuroma issues, from diagnosis to choosing treatment to the vagaries of post-op recovery.  

I assume you're aware that with small tumors, you're very likely a candidate for irradiation treatment, which is - obviously - non-invasive (no real risk of infection) and relatively painless.  Of course, radiation carries it's own inherent risks but it should be worth your consideration.  Many of our members are 'veterans' of either the GammaKnife, CyberKnife or FSR treatment - and most have had relatively good experiences.  However, this is a personal decision that requires research.  Whatever approach you ultimately chose to address your AN, know that we'll be here to support you.  We bring no biases regarding treatment and never question another AN patient's treatment decision.  We only want to help you in any way we can.  You've been through enough.  It's time you had some help from folks who understand what you're dealing with.  Now, you've found a place to get that kind of empathetic help and support.  Welcome home, Kevin.

Jim    
« Last Edit: December 20, 2009, 05:06:52 pm by Jim Scott »
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.

Amplified2000

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Re: My formal introduction from the FNG
« Reply #6 on: December 20, 2009, 05:04:27 pm »
Well thank you all for your friendly responses and offers of assistance! I am still trying to assimilate all of the information that is available here before I really start asking questions.. I'd like to at least sound like I know what I'm talking about!

leapyrtwins - Thank you for the offer, I may very well take you up on it  :D
Jim Scott - Yup that's it "Friendly New Guy" LOL
10th Cranial Nerve Neuroma - 4.6cm x 4.2cm x 6.8cm - Removed 5/08 by Dr. John Leonnetti @ Loyola University
AN - Left IAC - 20mm x 9mm x 11mm - 2/10
Mid-Fossa - Dr. Friedman @ HEI on 3/3/10
Total removal, only mild hearing loss.. did have a CSF leak but they fixed it :)
Home recovering :)

Cheryl R

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Re: My formal introduction from the FNG
« Reply #7 on: December 21, 2009, 10:19:40 am »
Kevin,    I am sorry to hear of what you went thru with your first surgery.       I am in Iowa and also have NF2 but so far only 2 ANs and a facial neuroma.       I go to the Univ of Iowa and Dr Bruce Gantz.     He has experience with NF2s which is what one wants as the choice in how and which AN to treat can vary from when one just has one.        House in LA also treat many NF2s.     Some drs are for radiatipn and some aren't when trying to save hearing is more of a challenge.                      I was very lucky that with my last surgery I was near deaf and planning on a cochlear implant but my surgery improved my hearing which is not a frequent happening.   I am deaf on one side though and will be.   
       I wish you well and hope you find the dr you are most comfortable with,                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

CHD63

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Re: My formal introduction from the FNG
« Reply #8 on: December 21, 2009, 10:58:58 am »
Kevin .....

Just adding my welcome to this forum of caring, supportive, and very informative group of people.  I do not have NF2, but I have had two brain stem surgeries so I can understand a tiny bit of your frustration.  It sounds like you are off on the right track with the referral to Dr. Wiet.

Please ask any and all questions and know that someone will chime in here with success stories and/or suggestions.

Best thoughts.

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

Pooter

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Re: My formal introduction from the FNG
« Reply #9 on: December 21, 2009, 04:29:30 pm »
Kevin,

Welcome to our little club..  While I'm sincerely sorry about the ups and downs that you've gone through the last few years.  You've definitely been through the wringer..  I'm glad you've joined us even though I'm sadded by the reason for doing so.

You've come to the right place for other people who just "get it" when nobody else (including doctors) really does.  I don't blame you for not wanting to go back to Loyola.  It sounds like you're on the right track with some good folks, though.

Welcome aboard!  Oh, and I have a couple of FNG's in my office.. Perhaps you're related?  ;)

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/

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