Author Topic: Newly Diagnosed  (Read 10505 times)

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: Newly Diagnosed
« Reply #15 on: February 09, 2008, 10:21:07 pm »
Welcome!
I never got a response from Phyl when i first came onboard so you should feel extra special!!
As you have already seen, there are many, many people who are always here for you!
K
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!

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Newly Diagnosed
« Reply #16 on: February 10, 2008, 08:56:28 am »
Welcome!
I never got a response from Phyl when i first came onboard so you should feel extra special!!
As you have already seen, there are many, many people who are always here for you!
K

*runs in, gives Kay a BIG huggle.......*
I'm sorry Kay, very difficult for me to keep up with all that recently joined us here... my bad  :'(  Good to see you here, participating and sharing and sorry for the delayed welcome.

Great to see you here.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: Newly Diagnosed
« Reply #17 on: February 10, 2008, 12:58:10 pm »
Hey Phyl~
I shouldn't have even written that -- you do such a great job of keeping up w/ everyone!!  I was sorry I posted that right after I did b/c I was afraid it would convey the wrong meaning!  Why should I bother with a little thing like that anyway, there are so many people here that need encouragement and support -- I want to just help w/ that!!
Have a great Sunday!
K
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!

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Newly Diagnosed
« Reply #18 on: February 10, 2008, 08:04:58 pm »
no worries... fa'getaboutit!  :-*


Hey Phyl~
I shouldn't have even written that -- you do such a great job of keeping up w/ everyone!!  I was sorry I posted that right after I did b/c I was afraid it would convey the wrong meaning!  Why should I bother with a little thing like that anyway, there are so many people here that need encouragement and support -- I want to just help w/ that!!
Have a great Sunday!
K
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Glenda

  • Full Member
  • ***
  • Posts: 154
Re: Newly Diagnosed
« Reply #19 on: February 10, 2008, 10:23:57 pm »
Hi K

The Great thing I have found about this site is that everyone is Extra Special !!   :D ;D

I Love you guys!!

Glenda (the Good Witch of the South)  ::)
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: Newly Diagnosed
« Reply #20 on: February 11, 2008, 08:28:13 am »
I have always joked that I know I am special since they named a cereal after me -- "Special K"!!!   :D
K
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!

Lorraine

  • New Member
  • *
  • Posts: 10
Re: Newly Diagnosed
« Reply #21 on: February 11, 2008, 11:00:17 am »
Mine too was the same size as yours.  I did not find this site until after my surgery.  I thought the best approach was to have surgery right away and get on with my life.  Even though I was given an 80% chance of saving my hearing that did not happen.  I have since suffered from severe tinnitus and a severe dislike of sound such as motors.  I also learned after the fact that even though I thought I had the best brain surgeon and the best AN surgeon the AN surgeon had an emergency and didn't show up.  Of course I had no recourse and will never know if the outcome would have been different if he had performed the AN part of the surgery.  I am telling you this not to scare you but to emphasize that you should not rush into anything.....weigh all your options and if it is more than one surgeon performing the task make sure you understand what will happen if one cannot make it.
Lorraine
Acoustic Neuroma Rt Ear
7mm
Surgery 2/9/06
Dr. Allan Friedman, Duke Hospital

Glenda

  • Full Member
  • ***
  • Posts: 154
Re: Newly Diagnosed
« Reply #22 on: February 18, 2008, 08:10:31 pm »
Tomorrow is the date to see the Otolarynologist!  I've had to wait a month since being diagnosed and am anxious to get his opinion.  I've got my MRI, doctor referral and question sheet (I've gathered with help from my friends here) and I'm ready to go.  Wish me luck!  Thank you all!
I'll update tomorrow......

Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

Kate B

  • Hero Member
  • *****
  • Posts: 743
    • AN World
Re: Newly Diagnosed
« Reply #23 on: February 18, 2008, 08:18:24 pm »
Tomorrow is the date to see the Otolarynologist!  I've had to wait a month since being diagnosed and am anxious to get his opinion.  I've got my MRI, doctor referral and question sheet (I've gathered with help from my friends here) and I'm ready to go.  Wish me luck!  Thank you all!
I'll update tomorrow......

Glenda,
You are an informed patient! Good luck tomorrow.  <keeping my fingers crossed>

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Newly Diagnosed
« Reply #24 on: February 18, 2008, 09:06:05 pm »
Glenda -

best of luck tomorrow; let us know how it goes.

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

Melissa778

  • Full Member
  • ***
  • Posts: 181
Re: Newly Diagnosed
« Reply #25 on: February 19, 2008, 10:03:10 am »
Best of luck at your appointment.  I too am new to this site as recently diagnosed with a 1.6cm AN.  Another person above, pardon me I forget who, suggested gettting some reading material from the ANA sent to you.  I did this the first week I was diagnosed and it helped me tremendously!  I highly recommend it.  Best of luck, keep us posted  :)
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Glenda

  • Full Member
  • ***
  • Posts: 154
Re: Newly Diagnosed
« Reply #26 on: February 19, 2008, 05:07:47 pm »
Ok all I am back from the otolarynologist.  He was very nice and took his time with my husband and myself.  He went over the MRI and I saw my AN for the first time.  I had tried looking at it on my computer but could never figure the program out....I am really not feeling any better than before I went.  I had all the info from ANA and from my friends here so I think I pretty much knew what he would say.  He recommended middle fossa surgery but said there was no rush as my AN is still small.  He said it is about the size of a small butterbean and that there is a 50/50 chance of keeping some hearing in the ear.  I am 49 years old and my daughter is due to have a baby on 10/1/08.  At the moment I have decided to wait and watch to see if maybe we can do surgery after the baby is born.  He did mention radiology but said there is a high probablitiy for hearing loss with that and he felt it should be a little bigger if I tried that.  (I had pretty much ruled that out for me anyway as I really want that booger out!)  He said he didn't think it would grow very much until then and it wouldn't lesson my chances of keeping some hearing much at all.  I have to admit I was very nervous while there and ask most of the questions, forgot one but am going to call back and talk to the nurse.  One answer he gave me has left me feeling really uneasy and I would love to have your opinions.  I really wish I could just talk to someone as I feel really alone right now.   :'(  First of all he said he done 20-30 if these surgeries a year and had done over 500 in his career.  When I ask who he used as his neurologist he said when he operated on a small one like mine he did the surgery alone.  Have any of you ever heard of anyone doing that?  There is an excellent neurosurgeon at this hospital who has worked on AN's, I have talked to one of his patients and he gave nothing but a glowing recommendation of him.  However he had his surgery in 1999 and had a different ENT surgeon.  (He also had a huge AN) I can find no one to talk to who has had surgery with the dr I saw today, (that is the question I forgot to ask, Were there patients I could talk to ???)  I plan on calling back and asking his nurse that question.  I am going to call the hospital and see if I can get another disc to send to House Clinc for their opinion.  Another thing that bothers me is he said to wait until Oct or Nov to do another MRI.  That is 9-10 months before doing a follow-up MRI and what if it takes a growing spurt.  I see Jan where your's grew alot in just one month.  I would really love to hear from some of you to get your opinions.  Is there anyone who had a small AN like mine?  Also I am in SC, are there any suggestions on doctors in the east that maybe I could get another opinion from.  Thank you all for being there... Still unsure of the best thing to do  ???

Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

Kate B

  • Hero Member
  • *****
  • Posts: 743
    • AN World
Re: Newly Diagnosed
« Reply #27 on: February 19, 2008, 06:24:43 pm »
Hi Glenda,

There are others that will respond relative to the hearing preservation and radiation.

Your doctor indicating he would operate alone is in my opinion unusual.  Most are done in tandem nowadays.
I once saw a medical diary show, called Sherry's Story. It was an acoustic neuroma operation. The doctors, including Dr. Friedman from House, was one of the doctors. I remember him saying that they could do all of the parts related to the surgery if they had too; but that the motor skills were different in opening the skull and those necessary to remove the tumor; it would require a change midstream during an individual surgery. That always stuck in my memory---one requires large motor skills and one requires fine motor skills.

Regarding waiting and watching, these tumors typically grow very slow. (Oftentimes it is cited that it is 2mm or less a year)

Your daughter's upcoming baby makes you a Grandma. Now that is an exciting event.  There are two ways to look at surgery should that be the route taken.  One is that if you decide to go ahead now with a small tumor, your recovery would be complete by then. If you wait until after the baby is born, your recuperation would be during the time the baby was a newborn...unless of course you decide to wait and watch for an extended period of time.

Do you have opportunity to get a second opinion?  I am a firm believer in that. You'd be surprised how much information you gain from seeing more than one doctor.

One other question: What is your current hearing level now?

Kindest Regards,
Kate
« Last Edit: February 20, 2008, 06:05:05 am by Kate Besserman »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Newly Diagnosed
« Reply #28 on: February 19, 2008, 11:51:57 pm »
Glenda -

the rapid growth of my AN was totally unexpected and no one knows why it happened; guess I'm just an oddball  ;D 
Seriously, I think I'm more an exception to the rule, rather than the norm.

I don't know much about doctors working together to remove an AN other than my own case.  I had a neurotologist (highly specialized ENT) and a neurosurgeon who worked together, which is what these two particular docs always do.  Surgical removal of an AN is a very delicate, very time-consuming task (my surgery took 7 1/2 hours) and it's better to have 2 pairs of eyes and hands to do the work.  From what I understand, it is very "close" work and eye strain can become an issue for the docs so they like to work as a team and relieve each other when necessary.  I think they also tend to have their own "jobs" during the surgery.  For instance, I know the neurosurgeon opened up my skull, but the neurotologist stitched me back up; they both took turns removing my AN.  The location of the AN is also a consideration - in my case it was on the 7th and 8th cranial nerves and the docs had to monitor the nerves as well as carefully remove the AN itself.  It can be a very tricky surgery.

For some patients watch and wait is a very good option and if it's one you are comfortable with, I can't think of any reason to rush into another form of treatment right now.  Your AN is considered small and chances are good that it will grow slowly.  Please know that whatever treatment decision you make, the members of this forum will support you.

I never sought a second opinion because I was completely comfortable with the first doctor I saw - my neurotologist.  I talked to him in person and by phone numerous times before making my decision, but I never felt I needed to see another doctor because I had confidence in him, his experience level, and his abilities - plus he offered me the option of surgery or radiation.  We just clicked and I knew that he was the man to do the job.   In fact, I scheduled my surgery without even talking to the neurosurgeon.  I figured if he was the only neurosurgeon the neurotologist would work with (and he certainly had other available options) than he was good enough for me.   When I did meet the neurosurgeon about a week prior to surgery, I was very impressed with him and his "can do" attitude. 

IMO, I had no reason to look elsewhere or consult with another doctor.   However, in reading your last post, I get the sense that you haven't found a confidence level in the doctor you spoke with.  So I think it makes perfect sense for you to seek a second opinion; it definitely can't hurt.  If you don't feel you can make an informed decision at this point, keep doing your research.

Jan

BTW - congrats!  You are certainly going to be a young grandma!  Only 49!  I'm 46 1/2 and my children are just going to be 12; guess I'll be an old grandma  ;D


     
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

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: Newly Diagnosed
« Reply #29 on: February 20, 2008, 10:45:56 am »
Hi Glenda.  Glad you got the doctors appointment over with.

I didn't have much time to make my decision for surgery, so I can't really answer any watch and wait questions for you.  I can tell you that my surgeon just took a position at Duke - that might be too far for you - but I hear (out of one ear!  :D)  that they have a good program there.  There are many good options on the east coast if that's where you want to go.  Sounds like you will have time to research your options - that's always good.

And by the way, may I say, October 1st is the absolute BEST day for your daughter to have her baby!  ;) 

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.