Author Topic: Syl's surgery update  (Read 28495 times)

Jim Scott

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Re: Syl's surgery update
« Reply #45 on: June 30, 2008, 12:30:36 pm »
Hi, Syl:

To the best of my knowledge, steroids are used to reduce swelling, important after AN surgery.  I had a post-hospital 5-day regimen and didn't have any sleeping issues, but then, my wife says I could fall asleep in the middle of a hurricane, so I guess I'm not the best source of information on steroid side effects.  Pain meds are another story and are usually prescribed as needed. If Tylenol handles whatever pain you may encounter, you're good.  The stool softener is always a good idea, for obvious reasons.  It seems as if you're coming along nicely, Syl.  Don't try to rush things but do keep progressing at whatever pace is good for you.

Jim
« Last Edit: June 30, 2008, 01:29:26 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.

Cheryl R

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Re: Syl's surgery update
« Reply #46 on: June 30, 2008, 12:48:36 pm »
Syl, You may have been given them thru the IV for so many doses.       I think it was a dose every 6 hours  and now can't remember how many doses total.     You would not need to get tapered off them if it was not a large number of doses.            I only ended up having to take some orally after I got home this last surgery this spring as I had an unusual post op the first 3 days after surgery.
                                                         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

leapyrtwins

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Re: Syl's surgery update
« Reply #47 on: June 30, 2008, 04:28:43 pm »
Syl -

the only steroids I got post op were given to me when I woke up after surgery.  After the neurosurgeon and the neurotologist had me run through the "facial exercises" - you know, smile really big, wrinkle your forehead, etc. - they decided I had a slight facial nerve issue, so I was given a dose of steroids.  I can't recall if it was an oral dose or something they put into my IV, but that was the one and only time I had steroids post op.

You may or may not have had steroids.

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

Syl

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Re: Syl's surgery update
« Reply #48 on: July 03, 2008, 11:26:39 am »
Hello fellow forumites,

Suddenly, 17 days post-op, the assymmetry shows up. This morning as I brushed my teeth, water spilled out of my AN side. Then I noticed my smile is not as wide on that side. Did this happen to any of you? My face appeared to be very symmetrical and unaffedted by the surgery until today. 

Otherwise, my progress is in a forward direction. My balance is improving, though I still haven't mastered the skill of staning on one foot with my eyes closed. And, I'm not ready to drive just yet.

This face thing has me very concerned.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

LADavid

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Re: Syl's surgery update
« Reply #49 on: July 03, 2008, 12:05:03 pm »
Hi Syl

I don't have an answer for that but I did have a similar experience.  And the discussion on steroids may be the clue.  When I was in the hospital loaded up on steroids, I was up walking within 2 days and only had a slight issue with palsy.  I came home with a week or so supply of steroids and the expectation I would be 100% in a month or two.  It could have been about the time I stopped taking the steroids that my balance worsened and my palsy became more pronounced -- I don't recall.  But here on my 7 month anniversary, my balance is still horrible (even with vestibular training) and I developed synkinesis.  Now I'm wondering if steroids may be the key to a complete recovery.

Any thoughts from those who are more medically versed?

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

Syl

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Re: Syl's surgery update
« Reply #50 on: July 04, 2008, 11:34:38 am »
Hi, Friends

Is it possible that a nice hot shower could have somehow affected the inflamation of my facial nerve causing the facial weakness on the AN side? I noticed it right after I took a hot shower yesterday. As the day progressed, my smile got more symmetrical. The asymmetry is present, but I can wink much better with that eye today. 

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Syl

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Re: Syl's surgery update
« Reply #51 on: July 07, 2008, 01:44:16 pm »
Hi, everyone

I'm 21 days post-op and will be going to my own home today. I've been staying with my sister and her family since I was released from the hospital. They've been wonderful caretakers and I will finally give them a break.

I continue to wake up with headaches on the AN side. I wake up once in the middle of the night with a headache and then again in the morning with a headache. If I take an afternoon siesta, the headache greets me when I wake up. OTC Tylenol is what helps take care of the headaches.

Looking forward to some PT for my equilibrium, but that doesn't start for another week.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Jim Scott

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Re: Syl's surgery update
« Reply #52 on: July 07, 2008, 02:42:17 pm »
Hi, Syl:

I'm sure you're happy to be going home.  The headaches must be frustrating but if OTC Tylenol handles them, that's a good sign that they're probably transitory.  I hope so, anyway.  I'm sure your doctor might have better information. 

Thanks for the update.  Now, don't overdo it.  Just take it 'One Day At a Time'.  :)

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.

Tamara

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Re: Syl's surgery update
« Reply #53 on: July 07, 2008, 05:33:53 pm »
Where exactly are the headaches?  Maybe it's a positional sort of thing.  For other reasons (leaky head), I've been sleeping on a gradually increasing pile of pillows so that my head is elevated.  Maybe try some different pillow and head positions...just a thought....

Tammy
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...

Syl

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Re: Syl's surgery update
« Reply #54 on: July 07, 2008, 10:19:20 pm »
Tammy,

The headaches seem to start at the neck and radiate on the AN side, shooting all the way to the temple with a throbbing, sharp pain. I haven't been able to sleep straight thru the night because the pain wakes me up. I finally get back to sleep, but it's there when I wake up in the morning.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Debbi

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Re: Syl's surgery update
« Reply #55 on: July 08, 2008, 10:53:52 am »
Syl-

I am still having a fair amount of neck and head pain - sounds similar to what you are describing.  I usually take either Advil or tylenol - occasionally a percoset if it really gets bad.  My neurotologist also suggested warm compresses on my neck and the side of my head/temple - this has also helped quite a lot in terms of temporary relief. 

I went to see a massage therapist a couple of weeks ago, and had her work on my neck and shoulder and that also really helped alot.  She suggested some self-massage where you put your finger right at the joint of your jaw bone and gently massage.  If you have a hard time finding the joint, open your mouth slightly and run your finger up along the front of your ear - you should be able to find the joint.  Then just rub it in a small circular motion - very soothing.

Tammy had a good suggestion, too, about trying different sleeping positions.  You can try combinations of pillows, or even get one of those foam "wedges" from Bed, Bath & Beyond. 

Hope you get some relief, Syl.

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

wendysig

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Re: Syl's surgery update
« Reply #56 on: July 09, 2008, 07:54:24 am »
Syl,
I'm sure going back to you own home will be a relief even though your sister was great to help you out.  I don't have any advice about the headaches but hope the advice you've been given by Debbi and the others helps. 

Wishing you pain-free nights,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Syl

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Re: Syl's surgery update
« Reply #57 on: July 14, 2008, 11:55:59 am »
Hello, everybody

I'm 4 wks post-op.

So I got my rx of prednisone for my facial asymmetry. It seems to be working. I can whistle again and I got my dimple back. My smile is ok, too. Every time I feel my eye and lip twitching, I get excited because it is always followed with increased animation on that side.

Due to the unhealthy air quality, I haven't dared go outside and walk until yesterday. Today I will attempt it some more, with a cane or a buddy of course. I'm still unsteady on my feet and not driving yet. Will start physical therapy for balance tomorrow.

Headaches are becoming less of an isssue. Maybe the prednisone has something to do with that, but I'm taking less Tylenol. The heating pad helps, too.

Debbie:
I made a trip to Bed, Bath & Beyond and found a u-neck micro-bead filled pillow which provides wonderful support. Thanks for suggesting I go there.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

cindyj

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Re: Syl's surgery update
« Reply #58 on: July 14, 2008, 12:31:52 pm »
Hey Syl,

So good to hear you can whistle!  That is definitely a good sign, in my not so expert opinion.  How is your equilibrium?  Know you're headed to PT tomorrow, but just wondering how it seems now.  Glad your headaches seem to be easing up as well. 

Hope all the good things continue for you,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

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Joef

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Re: Syl's surgery update
« Reply #59 on: July 14, 2008, 02:42:41 pm »
Hello, everybody

I'm 4 wks post-op.

So I got my rx of prednisone for my facial asymmetry. It seems to be working. I can whistle again and I got my dimple back. My smile is ok, too. Every time I feel my eye and lip twitching, I get excited because it is always followed with increased animation on that side.

Syl


   I think most people who have a delay facial nerve issues,. always come back to normal !! so this is good news ... its just part of the healing process .... I know for me going to facial therapy always seemed to help .. at least temporary .. so I warm shower does not surprise me

 you can whistle ! that's good !! .. I did not even think of this until weeks after my surgery I tried to whistle to get my dog in .....but nothing came out but air .. it was almost funny .. (yeah gota keep a sence of humor)
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital