Author Topic: 5 Weeks Post-op  (Read 9913 times)

LakeErie

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Re: 5 Weeks Post-op
« Reply #15 on: August 17, 2012, 10:05:29 am »
I felt the lightheadedness and bobble head for exactly 7 months - to the day. I still have occasional episodes of it, but they are now far between and last for just minutes at a time. I have wondered how much of this was due to brain decompression. I have no idea how long it takes for a compressed cerebellum and brain stem to decompress following tumor removal, but it seems reasonable to me that if brain compression causes some symptoms, why wouldn't decompression cause symptoms as well. I plan on asking my nuerosurgeon that question next visit in Oct.
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

miller

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Re: 5 Weeks Post-op
« Reply #16 on: August 17, 2012, 12:11:29 pm »
That is interesting about the decompression.  It would make sense.  I definitely believe it is good days and bad days.  Today seems to be one of the better ones, and I am going to enjoy it while it lasts  :)

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

mindyandy

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Re: 5 Weeks Post-op
« Reply #17 on: August 17, 2012, 05:49:59 pm »
I'm glad to hear you guys are all doing well. I can say so far my only issue is the facial twitching. I no longer wear my glasses this way nobody sees it. I have no real balance or dizziness. I went back to work 2 weeks after surgery and haven't had too many issues to complain about  ::)

I'm thankful that we are all here to complain about our post op issues  :)

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

It is what it is

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Re: 5 Weeks Post-op
« Reply #18 on: August 23, 2012, 07:03:18 am »
Hi.

This was the perfect thread to read today.  It is incredibly reassuring to hear that these symptoms are normal and continue for awhile. I needed to hear that the bobble head feeling will eventually go away. Also, I'll be thinking I'm walking normally and then for no apparent reason I'll stumble off to one side or the other.  I can't imagine driving yet. 

Liz, you have a long and difficult drive to work!  Will that be more difficult than the actual job? 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

LizAN

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Re: 5 Weeks Post-op
« Reply #19 on: August 23, 2012, 07:10:12 pm »
Liz, you have a long and difficult drive to work!  Will that be more difficult than the actual job? 

Unfortunately, Karen, my job itself is also stressful.  I usually don't mind it, but I need to be able to hit the ground running and I know I'm not ready yet.

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

millie

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Re: 5 Weeks Post-op
« Reply #20 on: August 24, 2012, 12:22:41 am »
Best wishes for  continued positive healing journeys.

It is what it is

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Re: 5 Weeks Post-op
« Reply #21 on: August 24, 2012, 07:30:01 am »
Liz, with a complicated job like yours on top of a difficult commute, it's great you are waiting until your brain is ready.  What symptoms do you notice now in a normal day?  Multitasking seems much more difficult for me now.  Does that get better? 

With caring,

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

LizAN

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Re: 5 Weeks Post-op
« Reply #22 on: August 24, 2012, 01:01:01 pm »
Karen,

I really need to go back to work after Labor Day, so I am praying I am ready.  I can't afford to lose my job.  Financially, I needed to go back after 6 weeks, but that didn't happen.  Hopefully, the universe will make allowances.

Multitasking has definitely been problematic for me, but it is getting better.  That is another thing that needs to be okay before I can return to work, as I will be managing multiple projects and teams.

It had been feeling like my balance was getting worse instead of better.  I suspect what actually happened is that, because it was getting better, I relaxed and started doing things I hadn't done before.  I was no longer being as conscious and deliberate about my movements, so I had more incidents of unexpected wonkiness or stumbling than I had in the beginning.  At least that is what I am telling myself now, and it feels better to believe it.

I feel a bit weak, like I'm anemic.  My stomach has been bothering me ever since I finished off the proton-pump inhibitors they gave me to protect my stomach from the steroids.  Are those available over the counter?  Maybe I just need to eat more regularly.  It's 2 pm and I haven't had lunch yet.

The side of my head still hurts in places and is numb in others.  If I bend over, my head will begin to throb, but it doesn't induce a huge headache now.  I am able to do my own laundry, which feels like a major step toward independence.

I still have the tinnitus, but I try to ignore it.  Sometimes, on top of the normal sound, I hear a brief "whoosh" or "chee".  Dr. Slattery told me the best treatment for tinnitus is to ignore it, which tells the brain it is not an important signal to interpret as sound.  Overall, without the muffled sound in my left ear and the recruitment, my hearing is better than before the surgery.  Cat noticed in the ICU that I was not asking people to repeat themselves as much as I had been.  Even though I no longer have the recruitment, without a hearing nerve on the left side, I still get a loud burst of a "chee" sound on my deaf side, when I hear a sudden loud noise.  Apparently, the other side of my brain is getting some of the signal from my right ear.  That I don't claim to understand.

I'm still sleeping 10 hours a night.  That will be okay if I can start going to sleep at 10 pm instead of midnight.  I'm not expecting to have much of a life once I go back to work, but I'm not doing much now either, and I will appreciate being around adults.  (The kids have gone back to school and I am taking advantage of the quiet around the house.)

My left eye is still dry, although it does now produce some tears.  I still have the bitter taste in my mouth but I can usually tolerate it.  Most days I am no longer eating a lot of Jolly Ranchers.

I did drive into the suburbs yesterday to go buy a ream of paper.  It was easier than I expected it to be, which was a huge relief. I am starting to feel a bit more like my old self.

My stress tolerance is not yet what it needs to be, in order for me to be able to handle my job.

I think that covers it.  Let me know if you have any specific questions that I didn't answer.  Keep us posted on how you are doing.

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

It is what it is

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Re: 5 Weeks Post-op
« Reply #23 on: August 24, 2012, 02:41:17 pm »
Liz, that was hugely helpful!  Thanks!!!  I hope things continue to improve to the point where you are comfortable returning to work in a time frame that works best for you.

I'm encouraged to hear multitasking is improving.  I forgot to ask about word finding problems.  Has that been a problem and if so, does that improve? 

Your theory about why balance seems worse makes perfect sense to me.  When I consciously take each step I have much better motor control, but when I'm not thinking about my walking I tend to have more stumbles and my body may suddenly go off to the left or right and not straight. 

Tinnitus is an interesting internal companion.  :).  Reading about your experience of the new normal with hearing is fascinating. 

Hooray for doing laundry and for successfully driving!

I've never been a good sleeper and that hasn't changed for me.  Maybe we can exchange some of our sleep and non sleep hours.  :)

So, dry eyes may continue for awhile.  Oh well...

Being able to tolerate high levels of stress sure would be a good thing before going back to work!!   

Thanks again Liz.  I'm sending you appreciation, caring and support. 

Karen

 
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Cheryl R

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Re: 5 Weeks Post-op
« Reply #24 on: August 25, 2012, 06:43:49 am »
LIz, eating more regularly would be a good idea.    Also Prilosec or Nexium are OTC versions of the PPI's that you were taking.     You might try something like Zantac.    Try that at bedtime (the 150 mg version) as stomach acid can bother more at night for some anyway.    If that doesn't work then go back to the Prilosec or Nexium type PPI.       Might check with your family doc if keeps up too long.            I do the Zantac at bedtime as GI issues act up for me with any stress or less sleep.        Hope this helps.                         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

LizAN

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Re: 5 Weeks Post-op
« Reply #25 on: August 26, 2012, 09:40:27 pm »
Karen,

I was having trouble finding words long before the surgery!  I wouldn't expect that to get worse with translab, but it could possibly be an affect of middle fossa.  How much trouble are you having with it?

I also have had long-standing problems with sleep.  After working with a Functional Medicine specialist for a couple of years, I had been able to get by on only 8 hours of sleep a night and was beginning to have a life again.  I'm hoping to get back there but I have no idea how long it will take.

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

LizAN

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Re: 5 Weeks Post-op
« Reply #26 on: August 26, 2012, 09:47:13 pm »
Cheryl,

Thanks for the tips on the medications.  I'll stop by the drug store.  In the meantime, I've been taking Tums.  I hope it gets better soon.  I've had problems with reflux before, but it had gone away when I stopped eating gluten.  This is feeling like gastritis.  During the time I was on the steroids, I wasn't having this problem.  They gave me enough of the PPIs to last 10 days after I stopped the steroids.  Then they put me back on steroids and they ended on the same day that I ran out of the PPIs.

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

It is what it is

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Re: 5 Weeks Post-op
« Reply #27 on: August 26, 2012, 10:14:14 pm »
Liz, thanks. That was helpful.  Both symptoms did pre-date surgery.  They are just worse now. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

millie

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Re: 5 Weeks Post-op
« Reply #28 on: August 28, 2012, 08:31:01 pm »
Isn't pantaprazole a medication used for troublesome tummies/protection for the stomach when one is taking a bunch of meds?  or acid reflux?  My mom has been taking it for years. Just a thought.

LizAN

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Re: 5 Weeks Post-op
« Reply #29 on: August 30, 2012, 09:48:31 am »
Pantaprazole sounds familiar.  That may be what Dr. Stefan had prescribed for me.

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