Author Topic: Pooter's surgery updates  (Read 84811 times)

Debbi

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Re: Pooter's surgery updates
« Reply #285 on: June 27, 2008, 12:02:52 pm »
Hi Brian-

Really sorry to hear about the headache - hope it continues to get better.  I have managed to avoid this particular complication, but I really sympathize - headaches are SO debilitating. 

Very concerned to hear about the fever - have you heard from your doctor about that?  Not sure what to make of the cold extremeties, although it suggests circulation problems.  Please be sure to let us know what the doc says?

In the meantime, try to rest.  At 8 weeks, I am having days where I am just tired to the bone - I know how frustrating it feels.  Hanh in there.

Debbi - sending you good thoughts
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

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Cheryl R

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Re: Pooter's surgery updates
« Reply #286 on: June 27, 2008, 12:23:16 pm »
I am always cold after the AN surgeries.       I now remember and took winter pjs with me to the hospital.     It is just recently that I seem to be doing better but some nights I still will have a problem. For a long time it was every evening.  I do warm up after been in bed a while with covers while my husbnad has almost none.                  I never did mention it to the dr.     I don't seem to have a fever with my oral thermometer.           I did a while back of 99.2 when went to the dr but I had an infected big toe at the time.              I had part of a toe mail removed 2 yrs ago and it has been acting up again and am debating whether the toenail again needs to be removed on the side. I am just recently off antibiotic.
                                                    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

Kaybo

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Re: Pooter's surgery updates
« Reply #287 on: June 27, 2008, 05:28:57 pm »
Pooter~
I have TONS of family and 2 nieces that are babysitting age if I need to send them over...seriously, they are good girls - I actually have nephews too if it is a boy!

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!

leapyrtwins

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Re: Pooter's surgery updates
« Reply #288 on: June 27, 2008, 05:59:42 pm »
Pooter -

I have no experience with what you are describing - other than being at home with a challenging 3 year old - only in my case it was 2 challenging 3 year olds  :o

As Debbi mentioned, the fever might be of some concern.  I'm glad you contacted your doctor about that.  Please let us know what he says.

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

Pooter

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Re: Pooter's surgery updates
« Reply #289 on: June 27, 2008, 08:02:40 pm »
Thanks all!  I finally heard from my doctor and he gave me clearance to take OTC pain meds like ibuprofen or tylenol.  My temp was somewhat elevated (98.9) before taking tylenol.  After taking it, not only is the headache gone (for now) but my temp is back to normal (97.9) and I'm not as cold.  Weird I know.  So, everything is "normal" again after taking the tylenol.

So far, my doctor doesn't seem to be concerned with the coldness or headaches or fever.  I'm not sure whether to take that as good news (that he's level-headed about it all) or bad news (that he's flippant about it all).  Time will tell.  For now, everything seems "normal" again.  Go figure.

Kaybo:  My dad and his wife came to town today, so I got a bit of a break from the little rebel.  He really took a liking to my step-mom.  Thanks for offering though!

Thanks for the concern all!

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

leapyrtwins

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Re: Pooter's surgery updates
« Reply #290 on: June 27, 2008, 11:11:48 pm »
Pooter -

glad to hear you're back to "normal"  ;)

Jan
« Last Edit: June 30, 2008, 04:13:42 pm by leapyrtwins »
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

wendysig

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Re: Pooter's surgery updates
« Reply #291 on: June 29, 2008, 01:10:02 pm »
Brian,
Sorry I fell behind on this thread.  Sorry to hear that you had a few really rough days recently, but even more glad to hear you are feeling better.  I'm sure your dad and step-mom taking charge of your three year old will help give you time to regroup.  Take it easy and don't overdo it for now.  Hope the next few days have you feeling better and stronger.

Sending good thoughts your way,

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!

Pooter

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Re: Pooter's surgery updates
« Reply #292 on: June 30, 2008, 10:56:39 am »
Well, it went from really good (pre-op), to really bad (right after op), to getting better, to worse again.  While the OTC drugs have helped, everytime they wear off now my temp shoots back up.. I've run a fever since Thursday night (along with the headaches, being cold, back/neck ache, etc).  I contacted my dr's office today and they now want to do a spinal tap to rule out an infection of the spinal fluid (aka menengitis).  They will do that tomorrow.  At this point, I don't know whether to hope that's it or hope it's not.  I'm just tired of taking ibuprofen/tylenol every 4-6 hrs to keep the fever/headaches in check.  Ugh!  When does it stop!?!?  It's one thing after another!

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

leapyrtwins

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Re: Pooter's surgery updates
« Reply #293 on: June 30, 2008, 11:03:38 am »
Pooter -

sorry you are having to deal with all these "issues".  Although I can understand you aren't thrilled with the spinal fluid tap to rule out infection, IMO it's definitely something that needs to be done.  Someone needs to get to the bottom of the fever "mystery".

I'm hoping that the results of the tap will help your doctor decide what needs to be done to make you feel better. 

Sometimes the road to recovery has many bumps - and sometimes, unfortunately, the bumps are large.  Stay strong and keep the faith.  You'll get through this.  We're all here to support you.

Please let us know how things go tomorrow.  I'll be thinking of you  :)

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: Pooter's surgery updates
« Reply #294 on: June 30, 2008, 11:54:35 am »
Pooter,

Sorry you're having a rough time with the fever. Hope the doc can figure out what it is and soon and take care of it.

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.

Tamara

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Re: Pooter's surgery updates
« Reply #295 on: June 30, 2008, 12:19:02 pm »
Sorry to hear of the latest development, Brian, but really, meningitis isn't something you want to fool around with, so at least you'll know one way or other.  Here's to hoping it ISN'T an infection, but that they find out what the deal is.

Take care, and keep us posted,
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...

cindyj

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Re: Pooter's surgery updates
« Reply #296 on: June 30, 2008, 12:22:49 pm »
Sorry for this latest issue for you, Brian.  Know it must be so frustrating.  Hope they do get to the bottom of it quickly and start you back in the right direction of healing. 

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

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Jim Scott

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Re: Pooter's surgery updates
« Reply #297 on: June 30, 2008, 04:13:07 pm »
Brian:

I share the regret of everyone who has posted on this latest manifestation of the post-op complications you've been dealing with.  It stinks - but I know you'll pull through this, it just takes longer than we would like.  A spinal tap is no picnic but in your case, probably a good idea to help your doctor get to the source of your temperature problem.

Know that you're in the thoughts and prayers of many people, Brian and we all wish you better days and renewed healing.

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.

wendysig

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Re: Pooter's surgery updates
« Reply #298 on: June 30, 2008, 05:52:13 pm »
Brian,
Sorry to hear things are still not going well.  Hopefully the spinal tap will tell the story.  I imderstamd upir ambiguous feelings.  Whatever the problem is, II hope teh doctor gets to the bottom of it once and for all and that your soon will truly be on the mend. 

Best wishes,
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!

Pooter

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Re: Pooter's surgery updates
« Reply #299 on: June 30, 2008, 07:30:24 pm »
Thanks everyone.  I know I'll get to the bottom of it, but it doesn't take away my frustration of having taken a few steps back in my recovery.  I'm worse than I was a few weeks ago and that VERY frustrating to say the least.  I'm not looking forward to the tap.  But if it helps them get to the bottom of the fever, headaches, achyness, etc then so be it.  I get a couple of hours of relief at a time.  Other than that I'm cold and just waiting for when I can take tylenol again (that helps with the coldness too), or my fever shoots up, or I get headaches, and I'm constantly achy.  I just want them to find it and fix it.  As the saying goes, I'm sick and tired of being sick and tired.  Thanks for all your support through everything.  Good, bad, and indifferent.  I'll update when I'm able to after I hear about the tap.

Thanks again!

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