Author Topic: Lots of People with Acoustic Neuromas  (Read 9030 times)

Suzy

  • New Member
  • *
  • Posts: 19
Lots of People with Acoustic Neuromas
« on: November 14, 2006, 06:22:53 pm »
I haven't been online in quite awhile so I thought I would give everyone an update.  I had retrosigmoid surgery 8/8/06. It's been three months now and I am doing very well.  I do have a constant loud humming in my left ear, I have a metallic taste that didn't occur until 1 month post-surgery, and I walk a little clumbsy when I am really tired.  I haven't had a hearing test yet to determine how much hearing loss I have as a result of the surgery, but my guess is that I lost about 60%.   Prior to surgery, I would wake up in the middle of the night or early morning with terrible headaches that would last until noon.  I haven't had a headache in 3 months and I can sleep like a baby now!!  I must tell you that the doctors told me that didn't think my headaches had anything to do with the AN....I believe otherwise.  I thought it might be a good idea to let others making an AN decision know some of the results after surgery.  I spent 5 days at Johns Hopkins, which in my opinion is an awesome hospital with great staff.  I didn't have to take any pain medicine other than tylenol after 3 days.  My AN was very small, only 1.1, so I did have options.  I chose surgery because I am the type of person that would lie in bed and think about all the "what if's".  I am 51 and in good health.  I thought surgery would be easier now than in my later years.  I just wanted this whole thing behind me.  I must tell you all that I am a big chicken.  One who passes out when having my blood taken.  Strangely, I never passed out, never shed a tear, and quite honestly, the whole experience wasn't nearly as bad as I had imagined.  It's amazing what we can do when we have to.  I truly think I am a stronger person having gone through this experience.  I am very surprised to learn that so many people that found out I had an AN have told me that had one, or someone they knew had one.  I bet I could name 10 people within a 100 mile radius that experienced an AN.  It makes me wonder if its true that only 1 out of 100,000 really get one.  Maybe more people get MRI's now so it's much more easily detected.  I know one thing though....I never played the lottery but I do now!!
I hope all those going through the decision making choose the best choice for them.  I truly think the decision making was harder than the surgery. To all, best of luck.

Suzy

Patti UT

  • Hero Member
  • *****
  • Posts: 709
  • Keep On Keepin On
Re: Lots of People with Acoustic Neuromas
« Reply #1 on: November 14, 2006, 07:26:37 pm »
Suzy,

   Thanks for posting and sharing your experience. It's good to hear/read  about one that went so smoothly. I am so very happy that you did so well. Wishing you the best in getting better and stronger with each passing day.

Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Obita

  • Hero Member
  • *****
  • Posts: 985
Re: Lots of People with Acoustic Neuromas
« Reply #2 on: November 14, 2006, 07:31:45 pm »
Hi Suzy and thanks for your update.

I really like hearing a post op story like yours. And on top of what sounds like an uneventful recovery (yippee) they saved your hearing!!  Congrats are in order for you all the way around.

Kathy

ps:  because your hearing is less than normal, can you tell where sound comes from?  That is what I miss the most being SSD.....pout, pout....
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

rebarman

  • New Member
  • *
  • Posts: 45
Re: Lots of People with Acoustic Neuromas
« Reply #3 on: November 14, 2006, 07:37:28 pm »
Thanks for sharing your experience. I am in the first stages of getting mine taken care of. For some personal reasons I am wanting to have the microsurgery rather than the radiosurgery, but the more I read (on here and other websites) the more I question if that is the right way to go.

I have only been on this website a couple of days, but everyone has been great and thay have all offered great information. I'm glad to read that your op was uneventful.
1.5cm x 1.4 cm AN on left side
Removed by Translab on Jan 29, 2007
Dr. Mattox & Dr. Olson @ Emory Univ. Hosp.

Boppie

  • Guest
Re: Lots of People with Acoustic Neuromas
« Reply #4 on: November 14, 2006, 08:00:57 pm »
I've reported my story so many times on this forum.  As an update to complications I may have had from surgery, I had none.  In particular I am another surgery patient who had very few headaches.  I have been lucky. 

I have celebrating news to report today. 

My MRI is clear, that 2 cm thing is out of my life!


I Boppie, age 65 now, almost one year post op, accept this award.  Thank you, Thank you!  Because this forum helped me gather facts and new friends, and because we found a gem of a neurosurgeon, and because my family took such wonderful care of me, with the grace of God my life is back together.  I will celebrate with hot chocolate! :)
« Last Edit: November 16, 2006, 01:02:00 am by Boppie »

rebarman

  • New Member
  • *
  • Posts: 45
Re: Lots of People with Acoustic Neuromas
« Reply #5 on: November 14, 2006, 08:09:52 pm »
That's great news, Boppie, go all out and put marshmallows on top.

 :)
1.5cm x 1.4 cm AN on left side
Removed by Translab on Jan 29, 2007
Dr. Mattox & Dr. Olson @ Emory Univ. Hosp.

richard

  • New Member
  • *
  • Posts: 18
Re: Lots of People with Acoustic Neuromas
« Reply #6 on: November 14, 2006, 08:19:44 pm »
Suzy

My AN is about the same size as yours was, I am 48 and I hope to have it removed Retro in January 07.  Thanks for posting your message. Everything I read brings me up or down and it's great to have a reason to be optimistic.  Where I work there are 3 of us with AN's out of 2500.  Thanks for bringing some joy into my evening.

Richard

Larry

  • Hero Member
  • *****
  • Posts: 1464
  • Scallywags Rule
    • Chronologer of the PBW
Re: Lots of People with Acoustic Neuromas
« Reply #7 on: November 14, 2006, 08:44:42 pm »
Suzy and Boppie - woo hoo!

great news.

laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Obita

  • Hero Member
  • *****
  • Posts: 985
Re: Lots of People with Acoustic Neuromas
« Reply #8 on: November 15, 2006, 06:23:00 am »
Boppie:

What great news!!!  That first year MRI comming back clean is a HUGE deal!!

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

Suzy

  • New Member
  • *
  • Posts: 19
Re: Lots of People with Acoustic Neuromas
« Reply #9 on: November 15, 2006, 04:54:29 pm »
Kathy,

Yes, I forgot to mention that it is difficult to hear which direction sound is coming.  I really noticed it when I thought I heard a funny noise while driving my car.  I am usually really good at pinpointing sounds.  I definitely find that much harder.  I am going to a concert tonight so even though I have limited sound in my left ear, it will be like surround sound again tonight.  Life is pretty good.

Take Care,
Suzy

marjoryb

  • Jr. Member
  • **
  • Posts: 57
Re: Lots of People with Acoustic Neuromas
« Reply #10 on: November 15, 2006, 05:22:06 pm »
Suzy - I'm happy to hear that your surgery was successful and you're headache free.   I had surgery at Hopkins in July - Was your surgeon Dr. Tamargo?  with Dr. Niparko?     

I had headaches before surgery, too and was told that they were not caused by the AN..... I don't believe it!

Marjoryb

Palace

  • Hero Member
  • *****
  • Posts: 600
  • Palace
Re: Lots of People with Acoustic Neuromas
« Reply #11 on: November 15, 2006, 06:21:47 pm »
 :)

Suzy, Boppie and all...


That is worth a celebration.  We will all raise our glass tonight to all the success stories!  YAHOOOO!

I can't wait to join you all in a success story.  I'm on the big counting down.  "Wow," the waiting is hard.

Yippppeeee good for you!

Take care and make it hot chocolate with the sprinkles on top of the whipped cream, marshmellows..............heck, put a shot of something in that hot chocolate....maybe a liquor!



Cheers,



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Lots of People with Acoustic Neuromas
« Reply #12 on: November 15, 2006, 09:41:55 pm »
Suzy, Boppie and all.. time to celebrate! I'm feeling a martini coming my way in your honor! :)

Phylo
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Windsong

  • Sr. Member
  • ****
  • Posts: 492
Re: Lots of People with Acoustic Neuromas
« Reply #13 on: November 15, 2006, 10:01:05 pm »
Suzy and Boppie,

Hey, lots of hurrahs for you. Really good news.

A      P.S. for brucifer?... Gk and Ck do not give headaches anymore than cut open sugery. I had FSR and yes about 3 months later I did have headaches. But i have not thought of them or taken a headache pill for some weeks/ months now for any head pain in my head . So i personally do not think the treatment itself is a reason for any headache but rather what goes on inside regarding any nerves/ tissue/ pressure/ swelling/barometric pressure/ water content in any of the previous mentioned along with blood vessels..... etc.....

hurrrah!

Windsong

Windsong

  • Sr. Member
  • ****
  • Posts: 492
Re: Lots of People with Acoustic Neuromas
« Reply #14 on: November 16, 2006, 01:19:46 am »
I think i see what you are saying now brucifer.... :)  thanks for clearing that up for me.

I guess i was wondering why you had said gk or ck may very well have etc....  re the headaches, but i see what you were thinking now.

True, shrinkage does take time with radiation. Then again some never shrink but sure do stop growing....and for many headaches never enter the picture.

I am  NOT windy as you addessed your response to my PS lol...
That's ok...

I am Windsong.....

Stay well.







[
 I think that in your case, your decision had a lot to do with your headaches going away. Had you had FSR or GK, you may very well have still been experiencing headaches. You went with your gut feeling, and I'm very happy your choice worked for you. Congratulations!

Bruce
Quote