Author Topic: Newly Diagnosed  (Read 10412 times)

Sue

  • Hero Member
  • *****
  • Posts: 1934
  • Que sera, sera
    • My Blog
Re: Newly Diagnosed
« Reply #15 on: July 17, 2006, 05:44:28 pm »
Sorry to say, the odds are almost none in regards to gaining back any hearing. I was told, once it's gone, it's gone.  Sorry about that, for all of us. 
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Obita

  • Hero Member
  • *****
  • Posts: 985
Re: Newly Diagnosed
« Reply #16 on: July 18, 2006, 07:03:39 pm »
Hi TT:

Please let us know when you are home from the hospital.  Everyone is always waiting for that first post-op post.

As for the hole filler, yep - its belly fat.  I forgot all about that part of the surgery until a nurse wanted to check my harvest sites.

Good luck to you and let us know how your appt. goes on the 25th.

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Windsong

  • Sr. Member
  • ****
  • Posts: 492
Re: Newly Diagnosed
« Reply #17 on: July 18, 2006, 09:59:36 pm »
I didn't have surgery as such... i had fsr....
but do you know,
no doc when discussing possible surgery treatments mentioned anything at all about where/what/how any other body parts might be involved in an AN op?????? like , i had to ask where anything might be taken to plug anything in my head? such as from my stomach etc.?
i don't think it's a big deal for most patients with ans etc....
i do, however, think that anyone having a surgical removal of an An should know what is involved


Windsong


Battyp

  • Hero Member
  • *****
  • Posts: 2361
Re: Newly Diagnosed
« Reply #18 on: July 18, 2006, 10:06:30 pm »
I had retro and didn't have any fat fills or anything harvested from anywhere.  I do feel a slight indention on my left side that I don't have on my right which isn't really noticeable (of course I have no one running their fingers through my hair either  >:( :-*)

You can't regain your hearing but with retro you might be lucky enough to keep what you had :o)  For me it I had no hearing prior to an actually do have a slight bit now which took away that one sided feeling.  It's not serviceable hearing but it's something :o)

Best of luck, and lots of prayers to those waiting for treatment!

Mtn Gal

  • New Member
  • *
  • Posts: 22
Re: Newly Diagnosed
« Reply #19 on: July 19, 2006, 02:08:56 pm »
Hi Terry.

I  had retro surgery seven weeks ago.  They did not fill in the gap with tummy fat (and I had plenty to give them).  I assume they put the bone back in place as I don't have any gaps or sunken areas behind my ear.  Check out this website and it may help you understand the different procedures:

          http://www.earsite.com
Or       http://www.earsite.com/tumors/index.html

When you get to this website, click on tumors and then on "more about acoustic neuromas" and that will bring you to a page that has pictures of where the incision is made for each surgical approach.  Click on each picture and it will bring up step by step picture drawings  of how they make the incisions and how they get to the tumor.  Every surgeon's approach is probably a little different, but this helped me have a better picture of the whole ordeal.

Before my surgery, I was concerned that post-op headaches would be a problem due to bone dust from them drilling thru my skull.  I had read about this on the ANA forum, so I asked my surgeon and he reassured me that they used a small instrument that would vacuum up all the particles before they exposed the area of the brain.  Well I'm optomistic, but I know dust particles including bone dust cannot all be sucked up, but after looking at the drawings on the above website I understood that it was possible for them to make it as dust free as they could before they opened the next layer which is the dura.  This site also mentions that the spinal fluid is drained off to let the brain relax, so that it can be moved away from the side they need to remove the tumor from.  That was a scary thought to me.  I think that is why most people feel so drained after surgery; besides the effects of anesthesia, they have to allow time for the fluid to build back up around the brain and let it recover before they feel normal again.  It's a good thing our bodies can adjust to all kinds of situations.  I am thankful to say my recovery has been super and I have no headaches to speak of; back to work in 23 days after surgery (office job).

Best wishes on your surgery and recovery.
Mtn Gal
Mtn Gal
Dx Spring 2003 (7mm)
MRI Spring 2006 (13mm)
Retrosigmoid Surgery 05/31/06
Wake Forest Univ. Med. Ctr.

TT

  • New Member
  • *
  • Posts: 39
  • Tenor Sax in stero; nothing better
B.S. Day -Thurs. 8/24/06 @ 7:30 AM
« Reply #20 on: August 21, 2006, 11:42:10 am »
Greetings,
I just read my initial post; what a typing mess. I was an emotional wreck that day and I've yet to find spell check on this site. My big day is closing in fast and I'm as ready as I'll get. The waiting as been pretty tough. I think about it and talk about it way too much. I know it's been an emotional drain on my family, but they hide it well. I've come to grips on knowing my life as I now know it will be somewhat altered, but as they say" That's Life" and I've learned to appreciate living. I went out and bought myself and my wife new vehicles last week. I'm ready to start the rest of my life with a whole new meaning. This is nothing but a minor setback, I know I'll be fine. I have faith and the amount of people praying for me has been over wheming along with the support extended from club members; I won't forget.
I will post my results as soon as possible, look for an encouraging note soon.

Terry

2CM
Diagnosed - June 22, 2006
Surgery    - August 24, 2006 7:30 AM @ St. Johns Hospital, St. Louis, MO - Retro Procedure.


 
2 cm AN - right side
Diagnosed 6/22/06
Retro. procedure performed on 8/24/06 / SSD
Dr. Peter Smith & Dr. Robt. Backer
St. Johns Hospital - St. Louis, Missouri

mellowrama

  • Full Member
  • ***
  • Posts: 172
Re: Newly Diagnosed
« Reply #21 on: August 21, 2006, 12:44:58 pm »
Hi Terry,

I'm sorta a newbie too (may22), but I'm still waiting and watching...or more correctly researching in my case. 
My tumor is also a little of 2cm.  Did you get a second opion besides from a surgeon?  I've seen 5 different docs now, and they almost all differ in their opinion, although if you have to have it out I understand that too.  Retrosimoid it the best approach I was told for me if thats the case for hearing preservation...please keep us posted.

best wishes, melinda
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

TT

  • New Member
  • *
  • Posts: 39
  • Tenor Sax in stero; nothing better
Re: Newly Diagnosed
« Reply #22 on: August 21, 2006, 02:14:29 pm »
Hi Melinda,
I commend your courage to wait and watch. I could never do it. I wanted this demon out the instant I leaned about it. I wish I could have had surgery the the same day I was diagnosed; sort of like heart patients. I am fortunate to live near a city like St. Louis who has many very good doctors. We were recommend to see Dr.Peter Smith by two ENT's who I know very well. They told us he was one of the best in the country and has over 800 AN surgeries to his credit. That's what I needed to hear. It took one meeting with him to know we didn't have to look any further. I made the surgery appointment on the spot. I'm praying to presevrve the little hearing I have although I'm prepared to lose it. Now, all I'm doing is counting down the hours (64).
Good luck with your decision. I'm sure you'll be comfortable with it as I am mine.
Terry
2 cm AN - right side
Diagnosed 6/22/06
Retro. procedure performed on 8/24/06 / SSD
Dr. Peter Smith & Dr. Robt. Backer
St. Johns Hospital - St. Louis, Missouri

Obita

  • Hero Member
  • *****
  • Posts: 985
Re: Newly Diagnosed
« Reply #23 on: August 21, 2006, 04:04:40 pm »
Terry:

I am very happy for you that your date with the surgeons is almost here.  My wish for you is that you will be as calm right before surgery as I was.  I was so at peace with my decision and the surgeons I chose that I was as calm as any other day the morning of surgery.  I hope for the same for you. 

My family was not as relaxed but that is to be expected.  We get to sleep through the whole thing and they get to worry.  They could not figure out why I was so calm.  I was calm because I wanted it out BAD.

Best of luck to you and your family - Kathy O'Brien

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Sue

  • Hero Member
  • *****
  • Posts: 1934
  • Que sera, sera
    • My Blog
Re: Newly Diagnosed
« Reply #24 on: August 21, 2006, 04:07:41 pm »
Good luck, Terry, on your upcoming surgery.  I hope everything goes as planned and that you are on the road to recovery soon. I know you have a lifetime ahead of you that will be all good. 

Thinking of you,

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

cinnamon

  • Jr. Member
  • **
  • Posts: 92
Re: Newly Diagnosed
« Reply #25 on: August 21, 2006, 04:22:39 pm »
Good Luck Terry. We will be thinking and hoping all is well for you on your upcoming surgery. Just try to remain calm- it will be over soon and you can start your new life.

P.S. What kind of cars did you buy? My husband is wanting a mazda 3- he has a ford F-150 now- with all the gas prices now.

We will be waiting to hear how your recovering.

 Lisa
2.0 cm tumor removed suboccipital on 07-20-06
Left side facial paralysis and deaf ear. Just now researching hearing aid after 6 years!

mellowrama

  • Full Member
  • ***
  • Posts: 172
Re: Newly Diagnosed
« Reply #26 on: August 21, 2006, 09:27:52 pm »
Hi again Terry,

Ironically, I used to live in St. Louis near hospital row (central west end) in an old 4 plex...my neighbors were all doc's and students.  The guy above my was a neurosugeon.  When I think of St. Louis I always think of the top medical facilities and doctors in the world.   I'm sure your in great hands!

best wishes for you and yours, melinda

22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

Captain Deb

  • Hero Member
  • *****
  • Posts: 3316
  • Phearless Phyll and Captain Deb!
    • Captain Deb
Re: Newly Diagnosed
« Reply #27 on: August 21, 2006, 10:37:17 pm »
I wanted this demon out the instant I leaned about it. I wish I could have had surgery the the same day I was diagnosed;
Terry


Don't mean to take this out of context, but I felt the exact same way about my AN--you are not alone! The stress of the waiting was way worse than the actuall surgery. After all, who doesn't like being the center of attention and getting waited on hand and foot! Can your wife get access to a computer and give us updates--maybe start a thread for us?  We are all walking around on eggshell the day one of the "family" has surgery, believe me. We'll be praying for ya, too!
Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW