Author Topic: found out yesterday  (Read 13724 times)

fav

  • New Member
  • *
  • Posts: 14
Re: found out yesterday
« Reply #15 on: October 01, 2010, 08:04:54 am »
i would like to know how many of you were cell phone users, average time spent daily on one, and do you all still put a cell phone to your head?
thanks
dan

Lizard

  • Hero Member
  • *****
  • Posts: 791
Re: found out yesterday
« Reply #16 on: October 01, 2010, 10:38:03 am »
Dan,
The cell phone thing is still up for debate, not sure if its what caused the AN or not.  I wasn't a huge cell phone user, but I have had one since the early days.  I do still put it up to my ear, but tend to text more now...
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: found out yesterday
« Reply #17 on: October 01, 2010, 01:38:23 pm »
i would like to know how many of you were cell phone users, average time spent daily on one, and do you all still put a cell phone to your head?

Dan ~

You may (or may not) be surprised to learn that this cell phone question has been a subject of discussion on these forums for lo these many years.  Some of us 'veterans' are a bit weary of the conversation but we also understand the curiosity of newly diagnosed AN patients who assume that even minute forms of radio waves next to their ear may have triggered the growth of the tumor we refer to as an acoustic neuroma.  It's not unreasonable to pose that question.  Unfortunately, although 'studies' have emerged on this issue, many are too small or are financed by a business or interest group that render the results, pro or con, suspect. For my part, I don't see the connection.  Remember, ANs were diagnosed decades before cell phones were invented.  I don't believe that just because the AN forms within the ear that the actual cause for the abnormal cell growth is necessarily associated to the ear, itself.  However, I'm not a doctor or scientist, just an AN patient - so my opinion is just that, an opinion, not supported by scientific evidence, just like most of the AN-cell phone 'studies' that are currently extant.  

That having been stated, I suggest you type 'cell phones' into the search box (on the left) and it will provide you with a plethora of threads from the past few years all relating to the cell phone/AN debate.  I think you'll find it interesting.

Jim
« Last Edit: February 01, 2011, 03:56:38 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.

jaylogs

  • Administrator
  • Hero Member
  • *****
  • Posts: 831
  • It's NOT a too-mah! (Anymore!)
Re: found out yesterday
« Reply #18 on: October 02, 2010, 12:13:07 am »
Hello there, and welcome to our little club...sorry for coming into the discussion so late but I just wanted to wish you luck on whatever you decide.  Someone told me in my early days of this that whatever choice you make will be the right one, so don't second guess yourself to death once you do make that choice! Also, on the cell phone thing, I used cells VERY rarely but my AN is on the side I would put a phone (I'm right handed, so I would use phone on left side so right hand can do whatever..) I am sure this debate will go on forever! Anyways, good luck and keep us updated, or if you need to vent we are here for that too!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: found out yesterday
« Reply #19 on: October 02, 2010, 12:18:07 am »
Numerous threads on the cell phone debate; nothing concrete has been proven.

Search on "cell phone".

Personally I still go with the fish hatchery theory (inside joke for all those "oldies" out there)  ;)

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

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: found out yesterday
« Reply #20 on: October 24, 2010, 07:00:02 pm »
Welcome fav, as nanramone (Nancy) said it illustrating that sometimes even the most determined of us change our mind, "I agree with Jan - at first, there was absolutely NO way I was having radiation...and later, I changed my mind!"

I suspect the cell phone theory doesn't hold. But just to complicate things, in a study I read, "Recent studies have examined the risk of radio frequency radiation emitted from cellular telephones on the development of AN. The hypothesis that intracranial energy deposition from hand held cellular phones might cause AN was tested in an epidemiologic study of 90 patients and 86 control subjects. In patients who used cellular telephones, the tumor occurred more often on the contralateral than ipsilateral side of the head".

Okay, I gotta go or my wife will blast me.

Glad to meet you, sorry it's under these circumstances.

Talk to you soon,

Mark
« Last Edit: October 28, 2010, 10:25:39 pm by 6pick »
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: found out yesterday
« Reply #21 on: October 24, 2010, 08:51:16 pm »
Welcome fav, kind of a nanramone story for me, "I agree with Jan - at first, there was absolutely NO way I was having radiation...and later, I changed my mind!"

HUH?  This isn't exactly agreeing with me.  At first I said there was no way I was having surgery - and that's what I ultimately did.

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

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: found out yesterday
« Reply #22 on: October 25, 2010, 12:35:09 am »
Yeah, I suppose I wasn't being clear. I was quoting nanramone who, I believe was trying to illustrate that we sometimes start out convinced we are going to follow one path only to change paths later. She said that is what you did, only you chose to have surgery and she chose (as I did) to have radiation. So I wrote that mine was a nanramone story, then I quoted her.

Does that help or should I just say sorry for the confusion, sorry to derail this thread, and call it a day?   ::)
« Last Edit: November 09, 2010, 06:02:12 pm by 6pick »
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

fav

  • New Member
  • *
  • Posts: 14
Re: found out yesterday
« Reply #23 on: November 09, 2010, 11:37:09 am »
scheduled for translab surgery 12/08/10 at scripps la jolla
question; for us working folks, how does disability pay and for how long?

fav

  • New Member
  • *
  • Posts: 14
Re: found out yesterday
« Reply #24 on: November 09, 2010, 11:42:41 am »
i have already lost all hearing in my right ear due to the 2.1 cm tumor
i have actually thought of not getting treatment and watching it, but i realize now it is too big for that.
i have read how the post op symptoms have left paitents changed forever, especially the 50+ crowd.

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: found out yesterday
« Reply #25 on: November 09, 2010, 06:01:38 pm »
I'm sending you all my best wishes, fav, good luck.

Bear in mind that, regardless of age, regardless of treatment, this tumor thing leaves all of us changed forever. Point? You're in really good company.

Keep us posted.

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

fav

  • New Member
  • *
  • Posts: 14
Re: found out yesterday
« Reply #26 on: February 01, 2011, 10:49:54 am »
hello,
thank you all for your kind words.
surgery was a success in the fact that they got all the tumor, zero facial numbness or paralysis, no headaches or dizziness.
however, about two weeks post op developed a different type of CSF leak.
no dripping from the nose, ear or wound... instead a lump on the side of my head where in incision is.
its been four weeks and size fluctuates down and up.
my surgeon says it will most likely go away on its own but has given me options; give it time, shunt, or a patch job with glue.
thoughts?
best  ....dan

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: found out yesterday
« Reply #27 on: February 01, 2011, 01:30:55 pm »
fav, congrats on a successful surgery (less the CSF). (Having absolutely no personal experience in the aftermath of surgery but after reading of others, I would count yours a successful surgery.) I don't dare offer suggestions on the leak, only congrats on the successful surgery. ;)
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

smiley

  • New Member
  • *
  • Posts: 8
Re: found out yesterday
« Reply #28 on: February 01, 2011, 06:28:21 pm »
Dan,

I too had the CSF leak with no dripping, etc.  I had the lump on the incision side and the doctor (HEI) told me to wait it out, and sure enough after approximately 2 weeks it was gone.

smiley

  • New Member
  • *
  • Posts: 8
Re: found out yesterday
« Reply #29 on: February 01, 2011, 06:30:43 pm »
Dan,

Just to clarify, between the date of the surgery, the lump developing, and the lump going away = approx. 5 weeks.

 


anything
anything