Author Topic: 5 Weeks Post-op  (Read 10678 times)

LizAN

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5 Weeks Post-op
« on: August 09, 2012, 05:17:15 pm »
Hi, Everyone!

Tuesday made 5 weeks post-op for me.

Since my last update, I went through a brief period where I could not lift my head from the pillow without excruciating pain.  I was having to use my hands to lift my head!  The docs at House said this can happen when the muscles that were cut start to knit back together.  They gave me Norco but said that Advil would actually be more helpful, and that I could also use a heating pad.  I took the Advil and applied heat regularly for a couple of days and now I only have to do it occasionally.  Even then the pain is not as bad as it originally was.

I am now able to be on the computer for more hours of the day - maybe 3 hours at a time, which is huge progress!  I am still not ready to drive yet.  My return to work may not be until after Labor Day.  That will put me in a financial bind, but I don't think I will be ready before then.  At that point I will be two months post-op.

The thing that has me a little concerned now is that the taste in my mouth has gone from bitter to bitter and salty.  As far as I can tell, I don't have any other symptoms of a CSF leak, and the CT scan and lumbar puncture that were done in the ER a few weeks ago showed no evidence of one.  I haven't done anything that I know of to cause a CSF leak since that time, so it seems very unlikely to me.  Maybe this is just a transitional phase as my facial nerve heals?

Thanks,
Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

LakeErie

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Re: 5 Weeks Post-op
« Reply #1 on: August 09, 2012, 05:36:54 pm »
 I had a nasal post-op CSF leak. It resolved on its own in 3 weeks. The fluid, if you do have a leak, has to go somewhere: nose, ear, or surgical wound. In the absence of any other evidence of a leak, don't worry about the taste change alone. I have had taste disturbances, including salty, for 10 months now since surgery and no return of any leak. In my case, the type of taste disturbance varies off and on, but is always there in some form. I am getting used to it. Good luck with the rest of your recovery.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

LizAN

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Re: 5 Weeks Post-op
« Reply #2 on: August 13, 2012, 10:59:34 am »
I had a nasal post-op CSF leak. It resolved on its own in 3 weeks. The fluid, if you do have a leak, has to go somewhere: nose, ear, or surgical wound. In the absence of any other evidence of a leak, don't worry about the taste change alone. I have had taste disturbances, including salty, for 10 months now since surgery and no return of any leak. In my case, the type of taste disturbance varies off and on, but is always there in some form. I am getting used to it. Good luck with the rest of your recovery.

Thanks for that information, LakeErie!  It gives me perspective and calms my fears.

The taste in my mouth continues to morph.  The saltiness is subsiding and the bitterness is returning.  It's not as bad as it was in the beginning, fortunately.  I'm doing my best to ignore it, but every once in a while a piece of candy does help.

Given my history of blood sugar issues, it's a relief not to be going through bags of candy rapidly.  Before the surgery, I had been completely off of sugar for almost two years, and was definitely insulin resistant at the time I gave it up.  So far, that issue has not returned but I want to be careful.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

lrobie

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Re: 5 Weeks Post-op
« Reply #3 on: August 13, 2012, 04:41:34 pm »
Hi Liz,

I'm glad to hear your headaches are getting somewhat better.  How is your balance affecting you?  I continue to have the bobble-head, "one too many drinks" feeling.  I, too, am not close to even trying to drive.  I would be afraid to drive around my block as there are many young kids.  When I'm ready, mabe my husband can take me somewhere safe.  I may, also, have to postpone my return to work.  However, I'm getting very bored at home.  I never thought I would say that word again....bored.

Take care of yourself.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

LizAN

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Re: 5 Weeks Post-op
« Reply #4 on: August 14, 2012, 09:50:28 am »
Lisa,

When had you planned to return to work?  Today marks 6 weeks post-op, and I had hoped to be back at work by now.  It is likely to be two or three more weeks.

Yes, my balance is still affected.  It is getting better, as long as my eyes are open, but I still get unsteady when I start looking around at the scenery instead of the ground in front of me.  I need more practice walking with my eyes closed - I am lousy at that and tend to fall to the side!  Same with standing on one foot.  I think my balance is very dependent on my vision, and my proprioceptive system is not as engaged as it could be.

I may try driving around on our road some time soon, but I can't get out of the neighborhood without getting on a busy highway, and my commute is 45 minutes to an hour.

Any headaches I get now are very mild - usually just throbbing, without pain.  I'm still putting heat on my neck, on occasion, but even that is much, much better.

It's very hard for me to see progress from day to day.  I wish I had made a chart of my original symptoms and then rated them periodically.  That would have given me a visual of my progress and might have been encouraging, or at least made it easier to predict my recovery time frame.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

lrobie

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Re: 5 Weeks Post-op
« Reply #5 on: August 14, 2012, 05:31:27 pm »
My return to work is supposed to be six weeks from surgery, which would be August 30th.  I had some friends from work bring me lunch today and visited.  They told me not to rush back.  I might have to agree with them.  The hard part is everyone thinks I look great.  However, they are not inside my head. 

I should have done that too...kept a list of initial symptoms.  Some things have gotten better, while some things are either worse or new.  I try not to complain too much though as I know a lot of people have had it much worse than me.

Take care,

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

sterry

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Re: 5 Weeks Post-op
« Reply #6 on: August 14, 2012, 08:02:31 pm »
Hi Liz, sorry to hear your recovery has slowed.  Mine did too, with a sinus infection, but once that cleared it was pretty big turn in the healing process.  I went back to work at about 8 weeks, half days at first, as prescribed by my MD here in Wyoming, for about two weeks then full time . I must admit, by the end of the day I was beat. How time makes a big difference. Lots more energy now, after almost three years (translab) 3.7 cm AN. I do have that darn salty tongue! Ugh. It is probably the hardest thing to deal with, is best in the morning after sleeping all night. Worst at night, I find sweets help, also flavorful foods take the edge off for awhile. But things that helps it the most is just being quite, and not eating or drinking.  Later is very hard not to do! But I have lost nearly 30lbs since surgery.  Out balance is very dependent on our vision. I still don't do well at night, night lights help. Driving took awhile, like 6+ weeks for me. I still dislike driving at night in unfamiliar areas. Have you tried massage for your neck?  I get myself a massage every 2 weeks because of turning my head weird to listen. Hope today was a better day for you.   Susie
Left AN 3.7 cm. 10-23-09 
HEI Dr. Friedman, Dr. Schwartz
Translab
Doing well

miller

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Re: 5 Weeks Post-op
« Reply #7 on: August 15, 2012, 08:59:03 am »
Hi all,

I am just over a month post op 7/12.  I have not been on in a little while, but I am having that weird taste thing going on, so I thought I would look to see if anyone else has it.  Also, I was doing great as far as balance, and walking.  I was able to go sight seeing in LA on days 7and 8 post op, but I seem to have  plateaued.  I can walk fine on flat ground, but I am still having some difficulty on uneven surfaces, and my head feels just plain weird!  Do you get used to the weird feeling in your head or does it eventually go away? It is always so reassuring to hear from others that are experiencing the same thing!!  People just tell me that I look great, but they don't understand  what is going on inside of me.

Cheryl
6/1/12 Diagnosed AN 3cm x3.1cmx3.2cm
Hearing Loss, Mild Tinnitus
Translab HEI 7/12/12 Wilkinson Schwartz
SSD, No facial paralysis, Tinnitus

lrobie

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Re: 5 Weeks Post-op
« Reply #8 on: August 15, 2012, 02:20:30 pm »
Cheryl,

I can't agree with you more...everyone thinks I look wonderful, but they aren't inside my head and know what I'm feeling.  My surgery was 7/18 at HEI, mid-fossa.  I, too, am wondering when this feeling in my head will go away or show some improvement.  Just moving my head slowly, my vision is as if it's bobbling around.  I'm feeling a little discouraged today.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

LizAN

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Re: 5 Weeks Post-op
« Reply #9 on: August 15, 2012, 08:14:45 pm »
We new posties all seem to be in similar boats.  I'm sorry any of you are having to struggle with recovery but relieved not to be alone in this rather frustrating process.  Given where others of you currently are, I must not be too far off course, after all.

I am now 6 weeks post-op.  When I turn my head quickly from side to side, everything is a bouncy blur.  Fortunately, when I stop, everything does stabilize very quickly.  My head feels wonky every time I move it, even a little bit.

I had been managing fine, but last night, for the first time since I fainted in the hospital, I fell.  It was not so much about balance as about moving too quickly on a slippery surface, the ceramic tile floor.  I landed on my left hip.  I was fine until about an hour later, when I started to ache in several places.  Ice helped.  I woke up in pain this morning, but as the day has gone on, it has diminished, so I think I will be just fine.  It did, however, shake my confidence a bit.

I'm frustrated and motivated to achieve some measure of independence.  I just drove around my neighborhood for the first time and it felt great, which was a confidence booster!  That said, it's a tiny neighborhood, and I can't leave it without getting on a major highway, so I'm still basically stuck at home until I can handle highway driving.  Just exactly what are the criteria for that?

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

Desilu

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Re: 5 Weeks Post-op
« Reply #10 on: August 16, 2012, 06:30:15 am »
Hi LizAN,

I would say the criteria for driving on the highway would be: to feel confident enough to know that you would not endanger the lives of others or yourself by getting behind the wheel at high speeds. Sounds like you are doing well with your recovery but don't push yourself beyond what you are capable of doing. It all takes time and everyone is different especially when it comes to the healing process. The bobble head feeling will get better with time. Walking (a lot) will help your body adjust. I wish you the best for a complete recovery! Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

pjb

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  • Sad to say now a W & W
Re: 5 Weeks Post-op
« Reply #11 on: August 16, 2012, 07:59:28 am »
I don't drive much anymore very frustrating but when I do venture out I have changed my driving habits and just learning that is okay...Local streets I do not do short cuts or zig zags only go straight as much as possible and might take a few minutes more and more lights but that is okay. As far as highway I yes an old woman...lol....was a little bad like to go fast was not an impatient lane changer okay sometimes and always drove in the fast lane. Well now I have slowed down stay mostly in the right lane as much as possible and again if it takes a little longer that is fine rather be safe for yourself and others ... You will get there just might have to tweak your driving and leave a little earlier.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

miller

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Re: 5 Weeks Post-op
« Reply #12 on: August 17, 2012, 06:23:04 am »
Hey all,

I too, was feeling a little discouraged.  I just want to feel like my old self!  I find it very helpful that all of us are going through the same things.  I met a lady yesterday, that had surgery two years ago, it was so nice to talk to someone who has had the same issues.  I was recently talking to my husband on the phone, and I told him that I thought someone was in our house because I heard a mans voice.  No one was at home so he told me to check to see if the kids left the tv on.  None of them were on, but the voices stopped.  A few minutes later I heard them again.  This time I could make out the words.  I asked my husband if someone was talking around him. They were.  I can hear the background people just as much as the person I am talking to on the phone.  It is so weird!  But, it made me feel better to know that the lady who had surgery 2 years ago had the exact same thing happen!         I went to my daughters volleyball game last night.  Climbing up the stadium bleachers with no hand rails was a challenge, but I made it.  My son did help me out on the last few steps.  I have not fallen down at all, but I have bumped into the wall several times, especially when I start walking fast, and then turn.  I plan to start driving this weekend.  I am going to take it slow though!!  I think having more independence will be helpful.  I am actually feeling better today.  It seems like the more normal stuff I do, the more normal I feel.  :)

Cheryl
6/1/12 Diagnosed AN 3cm x3.1cmx3.2cm
Hearing Loss, Mild Tinnitus
Translab HEI 7/12/12 Wilkinson Schwartz
SSD, No facial paralysis, Tinnitus

Cheryl R

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Re: 5 Weeks Post-op
« Reply #13 on: August 17, 2012, 07:31:46 am »
Cheryl, 5 weeks is still early in recovery and it is maddening to not feel what one thinks they should feel by now.   it does get better and we all go at our own speed.   The hearing loss is a big adjustment and some of it around people one never gets over and you learn how to stand by a person if do want to hear them clearly.   Sounds like you are doing very well and we all have our own post op story about how it goes in what we are doing.   There is the good day and bad day for a time too.                       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

lrobie

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Re: 5 Weeks Post-op
« Reply #14 on: August 17, 2012, 09:28:57 am »
I guess I should say, now, that it's encouraging to read that there are some recent post-op forum friends who are all dealing with similar issues.  I guess I didn't realize how long it would take for the feeling to go away or for me to get used to it.  Part of the reason I don't think I'm ready to drive is that when I'm riding in the car, it takes me back to the day when I was glad we had a designated driver.  I want to tell them, though, that they are taking curves way too fast.  I'm always holding on and have my passenger brake on all the time.   :)  I have to admit that I've been dwelling on this and wondering if there was something that didn't go right with my surgery.  I told myself I was going to be optimistic during this time, but it's easier said than done.

I'm so glad we have each other and this forum.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie