Author Topic: Has anybody had these symptoms?  (Read 3420 times)

sher

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Has anybody had these symptoms?
« on: June 25, 2008, 08:44:14 pm »
Hi Everyone,
I am still on the "Trying to decide when to treat train" and am wondering if anyone has had sinus pressure problems with their AN's pre-treatment and or neck stiffness? Sometimes I just feel like my head is mush inside. Hard to describe.

Thanks in advance,
Sherry  :-\
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

chocolatetruffle

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Re: Has anybody had these symptoms?
« Reply #1 on: June 25, 2008, 09:33:09 pm »
i did have a "foggy" brain feeling every now and then (before my surgery), like my thoughts are swimming through muddy waters in slow motion.  a couple of months before my surgery, i did experience stiff neck and could not find a comfortable spot on my pillow. Now that my AN is gone, i don't have these symptoms anymore. hope this helps  :)
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

Pooter

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Re: Has anybody had these symptoms?
« Reply #2 on: June 26, 2008, 07:02:26 pm »
Thinking back, I had sinus infections more than I ever have had in the year leading up to my ringing and loss of hearing (and diagnosis).  At the time, I just chalked it up to regular sinus stuff just more frequently.  Now, I wonder if the AN had anything to do with it.

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Nicole222

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Re: Has anybody had these symptoms?
« Reply #3 on: June 26, 2008, 07:21:45 pm »
My MRI indicated a cyst on my sphenoid sinus, but it caused me no problems.  I did, however, tell my ENT before my MRI about all my symptoms:  dizziness, numbness, headaches, hearing loss, etc.  And I added--"And just an overall 'stupid' feeling".   :P  He looked at me like I was nuts, but I told him that I felt in a fog.

My neck has always been stiff--and still is. Even more so ???
Had surgery (retrosigmoid) May 9th, 2008 to remove a 3.5cm AN from left side.
Home one week later, no facial nerve damage. 
SSD -Left ear.
Thankful daily for fantastic surgeons and wonderful family and friends.
34 years old.  Married mommy to Jordan, 23 months.

goinbatty

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Re: Has anybody had these symptoms?
« Reply #4 on: June 27, 2008, 06:58:45 pm »
I've always had occasional sinus issues anyway but the funny thing is that when I viewed my first MRI (after that shock of seeing the AN), it was like an aha moment.  I have a deviated septum.  The sinus that bothers me the most is on the right side, same as AN not that one has anything to with the other in particular.  Never did have any neck stiffness. 
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

pswift00

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Re: Has anybody had these symptoms?
« Reply #5 on: July 01, 2008, 09:56:15 am »
No sinus problems, but I do have a bit of a stiff neck. Hard to tell if it's from the AN or just psychosomatic.  I've had the foggy head problem for quite some time now, since way before I was diagnosed-  it's really hard for me to focus on the minutae of my work, and to stay focused and motivated.  My head always feels like it's swimming a little bit.  It's worse in the afternoons, it seems, and in crowded, busy places, like the grocery store on sundays, I always feel a bit light headed and loopy.  Again, though, sometimes I can't decide if some of these symptoms just make more sense now, or if it's all in my head (figuratively, not literally).  Like there have been times before I was diagnosed where i'd be walking around my office building and suddenly sway a bit or veer off to the right for no apparant reason.  Yeah, it probably was because of the AN, but I'll never know.  The ENT I met with yesterday said something interesting, don't know if it's true or not b/c none of the other doctors mentioned it, but he said, given the size of my AN, that there's just no way that my balance nerves on my left side aren't completely compromised at this point and that my right side has been compensating for quite a while.  Maybe that's true.  It could certainly explain all of the above symptoms.

Cheryl R

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Re: Has anybody had these symptoms?
« Reply #6 on: July 01, 2008, 10:14:56 am »
You are describing a tumor exactly!       The wonky head feel bothers many of us.      In time you may compensate some so is a little better.                   The neck may be feeling the way it is since the balance is not as good.             I have had tight neck problems for many years and actually don't even think it is AN related too much but just another thing I have not quite right. 
Your symptoms are not something you are dreaming up but experiencing all too well.           The off balance walking issue too is from the AN.           
Some of it may improve or may not from any treatment.    The body will compensate in time to some degree.
     Don't feel bad about living with it or mentioning it as we know what you are describing!
                Good luck with the AN journey.                         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

lori67

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Re: Has anybody had these symptoms?
« Reply #7 on: July 01, 2008, 10:18:32 am »
I was treated for "sinus" problems - infections, headaches... for 15 years.  I'm willing to admit some of those were probably really sinus issues, but amazingly, since I had my AN removed - I haven't had a single problem with my sinuses or with headaches.  In hindsight, I should have insisted on at least an x-ray or something, but never did because I didn't want to make a big deal over sinuses.

Sadly, my AN had gotten large enough inside the IAC to actually cause the bony canal to be affected - the AN put enough pressure on the bone to cause the bone to alter it's shape and become larger - so a simple x-ray would have shown that there was some sort of problem in there and maybe I would have been diagnosed sooner.   But, like they say... hindsight is 20/20, so not much point in worrying about it now.

Pswift - my balance nerve was completely shot too - my doctor said my good side had probably been compensating for years.  The bright side to that is that I didn't have as many balance issues after surgery as some people do since my body had been using only one nerve for a long time without my knowledge.  See, there's the silver lining!   ;)

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.

pswift00

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Re: Has anybody had these symptoms?
« Reply #8 on: July 01, 2008, 10:29:00 am »

Pswift - my balance nerve was completely shot too - my doctor said my good side had probably been compensating for years.  The bright side to that is that I didn't have as many balance issues after surgery as some people do since my body had been using only one nerve for a long time without my knowledge.  See, there's the silver lining!   ;)

Lori

Sadly, I don't think it accounts for the fact that I've never been good at riding a skateboard, or roller blading, or ice skating, or walking or a balance beam, or.... (fill in the blank)  ;D ;D

Pembo

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Re: Has anybody had these symptoms?
« Reply #9 on: July 02, 2008, 07:34:14 am »
Definitely had more sinus problems before AN surgery. I also had neck stiffness....my AN was sitting on the nerve.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

lori67

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Re: Has anybody had these symptoms?
« Reply #10 on: July 02, 2008, 03:10:25 pm »
[
Sadly, I don't think it accounts for the fact that I've never been good at riding a skateboard, or roller blading, or ice skating, or walking or a balance beam, or.... (fill in the blank)  ;D ;D

But you can tell people that's the reason!   ;)
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.

leapyrtwins

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Re: Has anybody had these symptoms?
« Reply #11 on: July 02, 2008, 06:37:41 pm »
[Sadly, I don't think it accounts for the fact that I've never been good at riding a skateboard, or roller blading, or ice skating, or walking or a balance beam, or.... (fill in the blank)  ;D ;D

But you can tell people that's the reason!   ;)

Well I've never been able to do a cartwheel!  Can I use this excuse too!  ;D LOL

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

lori67

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Re: Has anybody had these symptoms?
« Reply #12 on: July 02, 2008, 10:09:53 pm »
Since most "normal" people don't know what the heck an AN is - I think you could probably use it as an excuse for just about anything!   ;D

"No, I'm sorry, I just can't pay my taxes - I have an AN".  "Return my shopping cart to the cart return area - sorry, I have an AN".

Well, maybe some things won't work...

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.

leapyrtwins

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Re: Has anybody had these symptoms?
« Reply #13 on: July 02, 2008, 10:15:20 pm »
The shopping cart is one thing, but I don't think I'll be messing with the IRS any time soon  ;)

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