Author Topic: Newly Diagnosed in Richmond  (Read 10881 times)

Tod

  • Hero Member
  • *****
  • Posts: 660
    • My blog (work and life)
Newly Diagnosed in Richmond
« on: January 03, 2010, 09:18:10 am »
Hi y'all. I'm glad to find this site. I don't have the full details of the diagnosis, I get those tomorrow. However, I noticed a significant hearing loss in my left ear last spring and asked my PCP about it, he thought it was probably just age. It kept getting worse until it was nearly complete so I contacted and ENT and set up an appointment. The testing concerned him and so he scheduled an MRI and told me what he was looking for. The MRI was early morning NYE and the doc working the lab confirmed it was an acoustic neuroma and that he had already contacted my ENT and they would be in touch for an appointment.

So, I have spent part of the weekend reading and searching for information, which eventually led me here.

From what I can tell on this site, treatment is by and large successful, though not necessarily trouble free. Does anyone have any experience with UVa Hospital for treatment? They apparently have significant experience in this field.

Thanks for any info and advice,

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.

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: Newly Diagnosed in Richmond
« Reply #1 on: January 03, 2010, 09:41:08 am »
Hi Tod, and welcome from Virginia Beach!

I had my surgery in TN, as that's where I lived at the time, so I have no experience with doctors in VA, but I know there are others on the forum who do and I'm sure they'll chime in here.

There's a support group in the Richmond area - I'm not sure how active they have been, but maybe someone in the group has some info on doctors in the area.  When they do plan a get-together, I'm hoping to make it too, since I'm not too far away.  Maybe I'll see you there!

Good luck!
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.

LisaP

  • Sr. Member
  • ****
  • Posts: 414
Re: Newly Diagnosed in Richmond
« Reply #2 on: January 03, 2010, 09:57:29 am »
Hi Tod,


Welcome, I was dx with an AN back in March of 08 and have been watching and waiting since with now yearly MRI's in Boston,  I am from the western part of Massachusetts.  Good luck, you have found a very useful sight full of information and friends.  Let us know how  you make out with your doctors appts. 

Best Wishes

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

pjb

  • Hero Member
  • *****
  • Posts: 682
  • Sad to say now a W & W
Re: Newly Diagnosed in Richmond
« Reply #3 on: January 03, 2010, 11:15:30 am »
Just wanted to welcome you to this forum that has a wonderful group of people. I am sure there will be others to assist you in your area I wish I had more to tell you but only that you are in the right site and to research, research, research.

Regards,

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

pb

  • New Member
  • *
  • Posts: 10
Re: Newly Diagnosed in Richmond
« Reply #4 on: January 03, 2010, 11:44:28 am »
Good morning,
As another newbie here, I can only say that you have found an incredible site. Ask any question and you will have help from all over the place! And sage advice at that!

I had a very similar "story" to tell in my diagnosis, or lack of one. Very frustrating.

My newbie bit of advice is don't just look to UV. Take the extra time to get opinions from more than one doctor.

Good luck,
pb


suboo73

  • Hero Member
  • *****
  • Posts: 639
Re: Newly Diagnosed in Richmond
« Reply #5 on: January 03, 2010, 11:45:15 am »
Hi Tod!

Welcome to the Forum - but sorry you had to join this exclusive club... :o

I go to an ENT at UVA but am currently in Watch & Wait mode at this time.
There are several here who have had treatment at UVA and i am sure they will chime in.

Please keep us posted on your updates and progress.
All my thoughts and prayers are with you and your extended family.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: Newly Diagnosed in Richmond
« Reply #6 on: January 03, 2010, 12:36:16 pm »
Hi Tod and welcome to the Forum  ;D

I have no advice/suggestions for docs in the Richmond area, since I live in Illinois.

However, I'd like to recommend you contact the ANA for their informational brochures and a WTT (willing to talk) list.  The brochures are full of very valuable information about ANs and their treatment - radiation vs surgery - and the WTT list might just have someone in your area who has had treatment in VA.

Please don't hesitate to ask us anything here on the Forum - that's what we're here for.

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

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: Newly Diagnosed in Richmond
« Reply #7 on: January 03, 2010, 02:59:09 pm »
From what I can tell on this site, treatment is by and large successful, though not necessarily trouble free.

Yup, that is a pretty good summary. Welcome to the forum.

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.

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: Newly Diagnosed in Richmond
« Reply #8 on: January 03, 2010, 03:08:22 pm »
Tod,
Welcome to the forum. Please let us know what the doctor says,the size of the AN etc.
Lots of good feedback, advice, and info to be had here, you'll see :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3227
  • Life is good again!!
Re: Newly Diagnosed in Richmond
« Reply #9 on: January 03, 2010, 03:50:40 pm »
Tod .....

Adding my welcome to this forum of caring, supportive people.

I do not know anything about the doctors at UVa, but many on here can attest to the fact that this is one time you want doctors with vast experience dealing specifically with ANs.  Since ANs are relatively rare, you need to ask the doctors how many ANs they have treated and how often they have seen them in their practice.  I would guess UVa docs have seen many, but you need to ask.

Let us know how you are.

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

Tod

  • Hero Member
  • *****
  • Posts: 660
    • My blog (work and life)
Re: Newly Diagnosed in Richmond
« Reply #10 on: January 03, 2010, 04:42:39 pm »
Thanks to all of you, my new found friends, for this warm welcome.

This experience will be new for me as I have spent most of the last twenty years as caregiver. Being on the receiving end will be very new.

As much as I wish to get through tomorrow's consult, tomorrow night may be kind of rough as I have a sleep study scheduled because of a likelihood of apnea. While I am sure the apnea is quite likely, the some of the sleepiness/drowsiness I experience has certainly gotten worse in the last year. One of the AN sites I found mentioned sleepiness as possible symptom. Is this accurate? And if so, is it common?

Thanks again,

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.

Tamster

  • Jr. Member
  • **
  • Posts: 70
Re: Newly Diagnosed in Richmond
« Reply #11 on: January 03, 2010, 04:46:07 pm »
Hi Tod,
Welcome to the forum. Glad you found us. I'm almost 4 weeks post-op myself and feel that the people on this forum made everything about this whole adventure so much easier than it would have been without this great support system.  I spent hours upon hours here both before and after deciding my course of treatment. Sometimes it's just nice to be in a place where everyone knows exactly what you're going through.

Tam
6mm AN left side, diagnosed Sept 22, 2009
Middle Fossa  December 8th 2009,  Drs. Brackmann and Schwartz.
Facial nerve preserved, tumor out, SSD. tinnitus.

Life isn't t about waiting for the storm to pass. It's about learning how to dance in the rain.

http://www.caringbridge.org/visit/Tamst

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: Newly Diagnosed in Richmond
« Reply #12 on: January 03, 2010, 05:12:49 pm »
Hello Tod - and welcome. 

I'm sorry to learn about your AN but at least you've found a good place for information and support as you begin to deal with this thing.  I don't have any specific advice for you but fatigue is often a symptom of acoustic neuroma (I experienced this) and could be mistaken as 'sleepiness'. 

I trust your consultations will be informative and ultimately fruitful.  I wish you all the best and hope you'll consider the folks here your 'AN family'.  We're eager to help you in whatever way we can.

Jim
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.

GM

  • Hero Member
  • *****
  • Posts: 501
  • I hate annual MRI's !!!
    • My Blog Page
Re: Newly Diagnosed in Richmond
« Reply #13 on: January 03, 2010, 05:56:37 pm »
Todd,

UVA is an excellent hospital with extensive experience using the Gamma Knife to treat AN's with non-invasive radio-surgery.  Dr. Steiner is a Co-founder of the Gamma Knife procedure.  I had my GK procedure at UVA in 2003.  At the bottom of my post will be a few links, feel free to browse their site and contact them on information on the Gamma Knife procedure.

I also believe that they do perform surgical removal of the tumor as well....if that is your choice. 

Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Tod

  • Hero Member
  • *****
  • Posts: 660
    • My blog (work and life)
Re: Newly Diagnosed in Richmond
« Reply #14 on: January 03, 2010, 06:46:58 pm »
Gary, much thanks. I had found those links already and reviewed the pages. Good to know someone has had a good experience with AN treatment at UVA.
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.

 


anything