Author Topic: 6 Week Post-Op Update and a question or two!  (Read 2118 times)

Kathy M

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6 Week Post-Op Update and a question or two!
« on: February 23, 2009, 09:19:04 pm »
Greetings to all of you! 

Tomorrow is my 6-week anniversary of surgery - and sometimes, I think it feels like it's been much longer!  But here's the journey to date:

Before surgery - bad taste in my mouth, facial tingling, poor balance, burning feeling in mouth 24/7, eyes jerk back and forth every now and then

AFter surgery and subsequent staff infection - no facial tingling or burning in mouth, balance issues remain but getting better, eyes are fine, but I only cry on one side!  Has this happened to anyone else?  Will tears come back????  My neurosurgeon doesn't have much to say about it, but it's annoying to me!

I had a PICC line for high dose antibiotics when the staph infection was found, but it was removed last week.  YAY!!!!!  (Just when I learned how to get a shower!)

I generally have no headaches during the day at all. But at night, a few hours before I go to bed, I start getting one mostly in the back of my head.  If I don't take my vicodin (?) before I go to bed, I wake up with a horrible headache in the middle of thei night.  Is this normal????  At what point do I get worried about these regular headaches and try another medication?  They are quite manageable with the meds I take now. 

My biggest issue now, however, is healing this wound in the back of my head!   The Drs really scraped it a good bit when I had the staph infection and now it is this ugly wound.  Since I can't sleep on my face (at least I haven't figured that out!), it has to be wrapped at night and during naps to protect it (and my bedding).  The dr. said to use a wet/dry dressing - we do.  BUT, every time we take it off in the mornings, it opens it up again and start all over.  My husband said it is looking better every day, but it sure doesn't look that way to me...  How is this ever going to heal?  My dr. says to be patient, and it will take weeks!  UGH!  Has anyone had this experience?????

I feel like I'm getting stronger every day.  My appetite is back (which the 15 lbs I've lost will be but a memory soon!!!), and I now feel like doing the vestibular exercises that Jan sent me!!  My disability leave has been approved through 4/6/09 and at first, I thought there was no way I would need that long, but was I wrong.  Many of you have returned to your regular activities so much more quickly than me and I am so envious!

Before surgery, when I was scared to death and seeking counsel, so many of you told me that everyone is different and that no one is alike on this one!  That is so true!  But there is abundant life afterwards - something I doubted for a while...especially in the weeks prior to surgery (and yes, during the staph infection!).    I sure hope that I'm past the worst part of this!! 

Thanks to everyone who has helped me so much the past several weeks!!!  I'm off to bed - my husband has wrapped my head again, and tomorrow, we'll start all over!!!

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

sgerrard

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Re: 6 Week Post-Op Update and a question or two!
« Reply #1 on: February 24, 2009, 12:32:28 am »
I sure hope that I'm past the worst part of this!! 

I'm pretty sure you are, Kathy. :)

I'm glad to hear the PICC line is gone. Don't go being envious of those who got back to regular activities quicker. Everyone gets their own schedule around here. 6 weeks may seem like a while at the moment, but it is really not very long. Before you know it, the thing will have healed up, you will be six months post-op, and most of what you have been experiencing will just be a memory.

Hang in there.

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.

texsooner

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Re: 6 Week Post-Op Update and a question or two!
« Reply #2 on: February 24, 2009, 07:38:17 am »
Hi Kathy. Steve is right...it's not a race to recovery. As you've heard a million times...everyone is different. Sounds like the staff infection may have extended your recovery time, but you're doing fine overall.

I can relate with you on a couple of items. I also had some headaches(mostly at night) a few weeks after surgery, so I think this is normal. Personally I wanted to ween myself off Vicodin, so I did that over a few days and switched to Advil and Tylenol afterwards. I think after a couple of months, I didn't(and still don't) have many headaches and don't have to take any medication(very thankful for that). 

Also, the no crying on one side is a fairly common thing. I don't cry much, but I still don't think I can produce tears on my AN side eye. I had a very painful/irritating dry eye for about 3 or 4 months, and had to constantly put eye drops and ointment in to keep it lubricated. Then my nerves started getting better on the upper part of my face allowing me to close my eye and blink much better than I had previously. I still have to use drops a few times during the day and ointment at night, but it's 100 times better now than it was a few months ago. 

I didn't have much problem with my surgery site healing, but I'm sure someone can offer some info to you on that. Anyway, I think you're on the right track....since you're feeling better and stronger, I'd encourage you to get out walking and exercising if you're not already doing so. Stay positive.

Patrick
« Last Edit: February 24, 2009, 07:45:45 am by texsooner »
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

jazzfunkanne

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Re: 6 Week Post-Op Update and a question or two!
« Reply #3 on: February 24, 2009, 08:35:58 am »
Crying on one side is common, am over 2 years post op and my eyes still dont tear, i dont know if it ever comes back, having said that i had faical palsy so it might be different. take carex
over 4.5cm AN removed dec 06

Jwh

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Re: 6 Week Post-Op Update and a question or two!
« Reply #4 on: February 24, 2009, 09:21:49 am »
I mostly tear from the non AN side.   I think this might be common??  :-\
Jen
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

lori67

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Re: 6 Week Post-Op Update and a question or two!
« Reply #5 on: February 24, 2009, 10:51:31 am »
I'll chime in on the wet/dry dressing - it's normal for the wound to "open up" a bit when you take the dressing off.  The idea behind that type of dressing is that you put it on wet - usually with a mix of sterile saline and sterile water -  put the dry dressing on top of that.  During the time the dressing is on, the wet one starts to dry and will sortof adhere to the wound - this helps to debride the wound, or get the gunky stuff out so you can avoid infection.

When you start doing that, the wound will actually heal from the bottom up towards the top - called secondary intention, whereas normally your body would heal the skin first and then work on fixing what damage there is underneath.  It takes a little longer to see any improvement because the visible part still looks like it hasn't progressed, but it will get there.

Wow, I actually remembered something from nursing school!  Amazing.

Maybe Steve can knit you a hat to cover up your bandage??   :D

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.

Pembo

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Re: 6 Week Post-Op Update and a question or two!
« Reply #6 on: February 24, 2009, 03:33:05 pm »
I only cry out of one eye as well...the advantage to that is when I have a runny nose, it only runs on one side. Made breathing during my last cold easier. :)
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

leapyrtwins

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Re: 6 Week Post-Op Update and a question or two!
« Reply #7 on: February 24, 2009, 04:25:36 pm »
Kathy -

I can't believe it's been 6 weeks already!  While you've had more than your fair share of "issues" - like the staph infection - you are actually doing quite well in your recovery.

Patience is key - as is remembering that everyone is different and has a different AN journey.

Believe it or not, one day all the stuff you've been through will seem like a distance memory.  I didn't say a fond memory, but I did say distant  ;)

I'm thrilled to hear you are off of the PICC line; congratulations on that milestone  ;D

And keep the faith; I'm confident there will be many more milestones in the near future!

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