Author Topic: New poster  (Read 3005 times)

Kaybee

  • Jr. Member
  • **
  • Posts: 56
New poster
« on: January 05, 2010, 04:03:12 pm »
I am a new poster but not a new reader.  I found this site after my surgery and am thankful for all the good information and advice.  I am about nine weeks post surgery.  My tumor was 2 x 3 x 4 cm and removed at Methodist Hospital in Indianapolis.  The surgery was successful in that the tumor was completely removed.  I did lose hearing in my left ear although has not been as big of an issue as I first thtought.  (I can tune out my husband's snoring if I sleep on the good ear!)  I do have fully facial paralysis on the left side.  The facial nerve is intact and the surgeons expect it to recover but obviously I will need a lot of patience to wait this out.  I had tarsorrhpathy procedure on my left eye about 6 weeks ago and the stitches are just now beginning to pull out ... thankfully I  go to the opthamologist tomorrow.  I am going to get an exterrnal weight as the thought of cutting into my eye bothers me more than cutting into my head. 

I had severe balance issues after surgery.  I spent one week in the hospital and one week in a rehab hospital.  I had just started to lose balance prior to my surgery so my brain obviously had nor started to compensate.  I could not stand or sit up without getting sick.  It seemed like it took forever to improve.  But it did.  And I was able to eat and walk around when I left rehab.  The balance is significantly better with the help of vesitibular therapy an a great physical therapist who I had been seeing weekly.  I also have some left side weakness in my hand, which I really only notice when I type. 

I have also been coughing a lot in the last few weeks.  I'm not choking just coughing whenever I eat.  My ENT prescribed prilosec for acid reflux.  Anyone else had a lot of coughing?  It's definitely not a cold!  Also, my ENT didn't think it was related but my left nostril hasn't run since the surgery.  Seems like it couldn't possibly be a coincidence!  I am thankful the tumor is gone and so are the headaches that plagued me for more than a year.  Again, thanks to all those who have gone before me and I have nothing but good thoughts for those who come after!
2 x 3 x 4 cm tumor removed at Methodist Hospital in Indianapolis 10/30/09
Left facial paralyis/SSD (showed first signs of improvement at approximately 6 months post-op)

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: New poster
« Reply #1 on: January 05, 2010, 04:08:39 pm »
Hi, Kay - and welcome. 

I'm sorry you had to go through the 'AN experience' and have endured some difficulties not uncommon to post-op AN patients but I'm glad you've discovered the ANA site and forums and now, have chosen to post your first message!  Thank you for your kind words, too.  Of course, the folks here (me included) are ready and willing to 'adopt' you as one of 'us', advise you and most of all, support you as you make you way back to normalcy after surgery vanquished your AN. 

Jim
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.

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: New poster
« Reply #2 on: January 05, 2010, 04:18:01 pm »
Hi Kaybee and WELCOME!!
Glad you have found this site useful.  Let us know if we can answer any specific questions or if you ever want to "chat" send me a PM & I will call you!  Just wanted to welcome you...

K   ;D
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!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: New poster
« Reply #3 on: January 05, 2010, 10:09:18 pm »
Welcome to the Forum, Kaybee.

Sounds like you are well on the road to recovery, despite some initial post op issues. 

Generally recovery takes time and can be frustratingly slow, but I'm hopeful that as the weeks go by things will only improve for you.

Patience - while often hard to come by - is key.

Best,

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

anissa

  • Sr. Member
  • ****
  • Posts: 326
    • My Journey
Re: New poster
« Reply #4 on: January 05, 2010, 10:26:56 pm »
Welcome Kaybee!  I'm so glad that you've been around this site enough to know you're not alone.  Congrats on becoming a postie, so 9 weeks, your surgery was the end of October then?  Again, welcome.   ;D
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

CHD63

  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: New poster
« Reply #5 on: January 06, 2010, 07:42:04 am »
Kaybee .....

Adding my welcome.  It sounds like you are now doing quite well after a kind of rocky initial post-op.  I do not know anything about the coughing.  Others on here have had swallowing issues so may be able to give you some insight, if it is caused from that.  Many medications can cause coughing as a side effect, in case you have been taking any new medication.

Thoughts and prayers for complete facial nerve recovery.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

HeadCase2

  • Hero Member
  • *****
  • Posts: 778
  • Carpe Grog
Re: New poster
« Reply #6 on: January 06, 2010, 08:33:32 am »
"Also, my ENT didn't think it was related but my left nostril hasn't run since the surgery."

Kaybee,
  This is almost certainly due to your facial nerve being affected, hopefully temporarily.  I some had facial nerve affects for about 6 weeks after surgery, and part of that was nostril dryness on the AN side.  Give it time, things should continue to heal.
Regards,
  Rob
« Last Edit: January 06, 2010, 01:10:21 pm by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: New poster
« Reply #7 on: January 06, 2010, 03:06:24 pm »
Just wanted to make a quick comment on the issue of sinus problems on the AN side ... The right side (AN side) of my nose doesn't run, the eye doesn't tear, and that side of my mouth tends to be dry - all related to facial nerve damage.  I was watching a tear-jerker movie recently and my left eye and nose were running like mad - while my right side was completely dry!   ::) 

It really does seem like the coughing may be related to some sort of sinus problem - it's all connected.  Hope you get some relief soon!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com