Author Topic: Side effects, BAHA, and distractions  (Read 14693 times)

cmp

  • Full Member
  • ***
  • Posts: 191
Re: Side effects, BAHA, and distractions
« Reply #45 on: June 16, 2008, 12:34:23 pm »
Quote
Tammy said that this is just her luck to get an oddball tumor of an oddball tumor. 

I'm sorry Tammy is having some post-surgical unpleasantness, but glad to see she's keeping her sense of humor!

As others have emphasized, she's only a few days out from surgery, where it's easy to feel run over by a truck as well as discouraged about how long that feeling will last. (Every day will bring healing, of course, but healing happens too darn slowly, if you ask me!)

Please tell Tammy to hang in there--we're all rooting for her here. And do take care of yourself too, or that might become another thing we have to torture you for!  ;)
5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

4cm in Pacific Northwest

  • Hero Member
  • *****
  • Posts: 1324
Re: Side effects, BAHA, and distractions
« Reply #46 on: June 16, 2008, 11:45:39 pm »
Don,

I had the adhesive type tumor too.  :(

Know that if she had facial and eye function when she initially woke up from surgery -that there is much better chance that this will resolve. Most likely she had swelling that could have caused this… and you know that the facial nerve was not snipped or nicked being that she had function once initially conscious from surgery.

When I started to have eye issues, 3 days after surgery,  I actually phoned home (Oregon)  to my ophthalmologist  from the hospital  (California) on my cell phone, and ask for his advise one the eye care (After the neurotologists and the neurosurgeons could not agree on the use of tape on the eye.) Remember that the “Eâ€? in ENT does not stand for eye. I gooped up with the stuff they gave me at the hospital but as soon as I got home I went straight to and ophthalmologist for help and an exam. (Then I was drugged up and using a walker as I entered his office. Today he saw me, and was so please with my progress as I skipped in for a check up.)  Many cringe when they hear that neurotologists are still taping the eye shut. Try to see if you can get her a temporary-eye-weight until the eye function returns. (Personally I wish that neurotologist just kept a supply of these on hand.) Also it is ok to tape under the eye sideways,to reduce the droop (to keep fluid in), – but taping the eyelid shut is controversial.


The stick-on temporary-eye-weight was what was prescribed to me and it worked like a charm… much better than all the drops and goop.
I had to hassle a bit with our health insurance but they finally did reimburse us- for it.

http://www.meddev-corp.com/1%20product/Eyelid%20Closure%20Products/External%20Weights-FAQ.htm

&
http://www.medcompare.com/details/34993/Blinkeze-External-Lid-Weights.html

My balance improved the day I got the eye weight on too. The eye plays an important part with balance.

Icing the incision may help with the pain and the nausea. No more than 12 minutes at time though -as you want to avoid frostbite. I was not offered ice at the hospital- I had to ask for it. It helped me.


You are right about the back pain being related to the positioning- for a long surgery.  Also know having to always sleep on the non AN side can strain the back too. Be sure she takes advantage of seeing a physiotherapist (Occupational therapist) before hospital discharge.

I highly recommended the booklets on this page.

https://secure.baxinternet.com/~anausa/for_sale.html

Facial Nerve and Acoustic Neuroma - Possible Damage and Rehabilitation (AN4)
Tips and information for patients who have facial weakness or paralysis after treatment for acoustic neuroma. Includes an explanation of the facial grading system and some exercises that can be performed at home to improve facial tone. Updated: February 2007

Price: $2.00

Eye Care after Acoustic Neuroma Surgery (AN6)
Details on caring for eye problems caused by facial weakness following acoustic neuroma treatment; includes information on corrective procedures and patient managed eye care. Updated: June 2007

Price: $3.00

(the “eye-lid tapingâ€? directions etc  though needs updating… and they need to add the temporary eye- weight option)

Improving Balance Following Treatment for Acoustic Neuroma (AN8)
Explains the balance system and causes of balance disturbance and offers exercises with easy-to-follow instructions that patients can use to improve balance function. Updated: December 2007

Price: $3.00

The balance booklet has some good neck stretches in it.

The nausea could be from a combination of the trauma of surgery (and inner ear) but also from the pain meds. Hopefully they can give her anti-nausea meds. Once those kick in see if she will drink a high calorie nutritional drink such as “boost� or “ensure�. The hospitals have these. (When you get home know that Carnation Instant breakfast powder, added to milk, has the same nutritional value at a fraction of the cost)


Don- my husband can totally relate to your post and watched this happen to his wife. Hang in there! Our hearts go out to you both. Tell Tammy that it does get better. I clearly remember that stage she is at (as much as I would rather forget)- HUGS to her… and you.

Daisy Head Maizie
« Last Edit: June 16, 2008, 11:50:47 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Tamara

  • Sr. Member
  • ****
  • Posts: 282
Re: Side effects, BAHA, and distractions
« Reply #47 on: June 17, 2008, 03:37:59 pm »
Hey there all,
  I'm home, feeling about 50% human again.  Now where's the darned grog????
  OK, the surgery bites big time, but I guess it's good I dealt with the small sticky guy now, rather than later.  I COULD do without the facial palsy, but will definitely be checking into the temporary eye weights. (thanks Daisy)

  THANK YOU so much to everyone who posted.  Don read the posts off to me last night, and then I read them all myself twice before bed last night.  I cannot tell you what a comfort it was.  Kind of like all you guys were tucking me in....

  My husband and sons have been outstanding, and I look forward to first-rate care here at home, and especially a bed that doesn't adjust itself every time I move.  We have been spared the massive flooding that a lot of Wisconsin has had so I intend to go and check out the gardens later.

  My housecleaners came yesterday, which I have to say is probably the highlight of this whole experience.  I can get used to this!

Again, my heartfelt thanks.
Time to go rest again,
Tam
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: Side effects, BAHA, and distractions
« Reply #48 on: June 17, 2008, 04:17:59 pm »
Tamara~
So glad you are home and doing well.  Isn't that the best feeling to have a clean house and you didn't have to do it??

K
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!

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: Side effects, BAHA, and distractions
« Reply #49 on: June 17, 2008, 04:59:14 pm »
Tammy-

Wonderful to see your post!!! I am glad you are home.  About the only thing that beats a clean house is sleeping in your own bed.  That remains a memorable highlight for me in the recovery journey.  I still experience a little moment of bliss when I lay down for the night.

Your family and your great attitude (and us, of course!) will get you through the ups and downs of the next few weeks.  Just remember to take it easy and listen to your body (as if you will be able to ignore SOME of what it tells you!) 

I will keep fingers crossed that your face improves quickly - I know how discouraging that is! 

Debbi - sending you a lopsided smile - and lots of healing hugs
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

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Side effects, BAHA, and distractions
« Reply #50 on: June 17, 2008, 04:59:39 pm »
Tamara -

glad that you're home and feeling 1/2 human - the other 1/2 will come in time.  Patience, patience  :)

I didn't realize you are in Wisconsin, but I'm happy to hear you didn't have major flooding.  I got an email earlier today from the WI Tourism office that said that despite the flooding, the Dells are still open for business and that water activities on Lake Delton have been moved to Mirror Lake.  Hopefully the tourist industry will be salvaged.  Whereabouts are you?

Lay off the grog for a few weeks - it won't really help you feel any better - and don't torture Don - afterall he did an excellent job as your scribe  ;)

Stay strong,

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

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: Side effects, BAHA, and distractions
« Reply #51 on: June 17, 2008, 07:59:47 pm »
Wonderful news, I'm glad you are home, you will feel better just being there.

Take it easy, enjoy the hired help, and tell that Don guy he is okay, he can visit us anytime.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Pooter

  • Hero Member
  • *****
  • Posts: 1291
  • The Official Breeze Conjurer - PBW
    • Blog Website
Re: Side effects, BAHA, and distractions
« Reply #52 on: June 17, 2008, 09:19:30 pm »
I concur, its great to see ya post!  I'm glad that things are going as well as expected.  All this will pass too.  You'll be back at em soon enough..  Tell that Dan guy that he can come visit anytime as Steve said.  :)

Brian aka Pooter...
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

LADavid

  • Hero Member
  • *****
  • Posts: 940
Re: Side effects, BAHA, and distractions
« Reply #53 on: June 17, 2008, 11:07:14 pm »
Hey Tammy

Good to see you back.  Don was great.  Thank him for us, you have a good guy in your court.  I think I had somewhat the same thing as you -- a small but sticky thing that caused the nerve to stretch.  The first thing you should know if you don't already is make sure you protect your eye.  Are you seeing an opthomologist?  He did recommend that I take a small sliver of tape and tape it under my eye-lid so my eye closed easier  The next thing is your palsy.  Patience is a virtue.  But I would ask your surgeon about seeing a good facial therapy specialist.  I think Jackie Diels is in your area.  That is where my surgeon failed me.  Had I seen a therapist early on, I don't believe that I would be dealing with two years of synkinesis PT now.

And please do know this, I was at 50% like you six months ago, but I'm at 70% today.  Progress is not measured in days or weeks but in months.

My best wishes

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Omaschwannoma

  • Hero Member
  • *****
  • Posts: 777
  • Life is a journey, not a destination
Re: Side effects, BAHA, and distractions
« Reply #54 on: June 18, 2008, 05:41:03 am »
Glad your home and typing to all of us so soon.  David is right about the healing thing--it can be slow for some of us, so don't expect a rapid return to your old self, that way if it does happen you'll be pleasantly surprised!  Give your hubby a hug for me, he did a fine job keeping us informed. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: Side effects, BAHA, and distractions
« Reply #55 on: June 18, 2008, 08:51:12 am »
Tammy -

Good to see you back!  50% human is pretty good.  It gets better.

You hubby did do a great job - but I think it was because we scared him when we said we would torture him too!   :D

Enjoy the gardens.  I'm glad they're not underwater.  And definitely enjoy your own bed and your housekeeper!  Send her this way when she's done!

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.