Author Topic: Mid fossa next week  (Read 16909 times)

lrobie

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Re: Mid fossa next week
« Reply #30 on: January 12, 2012, 06:12:07 pm »
Zach,

Thank you for keeping us updated on Liz's progress thus far.  I may be in the same boat in the not so distant future.

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

lizzie1hoops

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Re: Mid fossa next week
« Reply #31 on: January 13, 2012, 12:15:22 pm »
Liz is out of the ICU and into a nice corner suite to recover without nearly as much wires and tubes hooked up. She's resting without the annoyance of hourly cognitive and motor-function tests from the ICU staff overnight (really great staff here at Swedish by the way).

Liz improves by the hour and is sharp as a tack, but she's a bit groggy and she's not a happy bunny at the moment while everything heals. She has full facial motor control and apparently no hearing loss (the next 5 days will tell if the nerve heals). Almost all the pain is managed with an I.V. "cosmopolitan", but she's is very nauseous and gets dizzy when she moves even just her head—all part of the balance nerve recalibrating. She's got a long road of physical therapy ahead and exercises start today. With luck she'll check out of the hospital early next week and be able to recover at home. If things go well hopefully the next update will come from Liz herself!
—zach—
5x6x11mm right sided AN.
Surgery (middle fossa), Dr. Backous, Swedish Neuroscience, Seattle, 1/12/12 after 6 years W&W.

mindyandy

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Re: Mid fossa next week
« Reply #32 on: January 13, 2012, 01:15:23 pm »
That is wonderful news. I'm very happy to hear that her facial function is good, hearing is good (so far) and that she is doing well. Cannot wait to hear from her herself.

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

Jim Scott

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Re: Mid fossa next week
« Reply #33 on: January 13, 2012, 02:00:21 pm »
Zach ~

Bravo! to Liz!  I've followed your posts and appreciate you taking the time and making the effort to keep us informed.  The first three days post-op are always rough (I slept through most of those) but you'll be surprised at how quickly Liz gets back to 'herself' after a few more days.  Being home will help, a lot.  Looking forward to seeing a post from Liz, but thanks for posting in her stead.   

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.

CHD63

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Re: Mid fossa next week
« Reply #34 on: January 13, 2012, 02:51:31 pm »
Zach .....

Thanks for letting us know about Liz.  So glad the worst is over and she is apparently doing very well.  As Jim said, the first three days do not count and she should see rapid improvement soon.

Thoughts and prayers continue .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Barb909

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Re: Mid fossa next week
« Reply #35 on: January 13, 2012, 08:41:26 pm »
Zach,

So happy to hear that Liz is out of surgery and that things seemingly went so very well!! I expected nothing less actually. I have so enjoyed "getting to know her this last week" and look forward to meeting in person. Her positive energy is contagious! That Dr. Backous continues to make a name for himself in just the last few weeks in our small support group here in Seattle.

Tell her hello and that she continues to have healing thoughts being sent her way by many!

Barbara
Feb. 2010    4 x 8 x 5mm
June 2011   4.7 x 8.9 x 4.0mm
May 2012    4.5 x 9.1 x 3.9mm
Sept. 2013   5 x 10.1 x 5mm
Feb. 2015     6 x 13 x 5 mm
In IAC near cochlea
Mild hearing loss, tinnitus
W & W, thinking about treatment

lizzie1hoops

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Re: Mid fossa next week
« Reply #36 on: January 17, 2012, 02:26:41 pm »
Hi everyone! I wanted to make sure to post something, however small, to let you know I'm home and resting comfortably. My pain and nausea are under control, but I guess balance is the final fronteir. I was so pleased to make it up our spiral staircase to shower and sleep in my own bed.

I'll have sutures and staples out Friday and try to arrange some outpatient physio to keep me motivated. Meanwhile, along with the rest of Seattle we'll continue to prepare to be snowed in!

I can't thank you enough for all your thoughts and prayers, they've surely helped me get this far.

More soon,
Liz
5x6x11mm right sided AN.
Surgery (middle fossa), Dr. Backous, Swedish Neuroscience, Seattle, 1/12/12 after 6 years W&W.

Jim Scott

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Re: Mid fossa next week
« Reply #37 on: January 17, 2012, 02:44:42 pm »
Hi, Liz!

Thanks for posting!  It's great to learn that you're home and resting comfortably.  I'm confident your recovery will continue at a rapid pace but regaining your sense of  balance may take a bit longer.  Don't push yourself but don't give up, either.  It gets better, as many here can attest.   :)

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.

New girl

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Re: Mid fossa next week
« Reply #38 on: January 17, 2012, 03:45:18 pm »
Hi Liz - Congrats on a successful surgery!
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

stephSF

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Re: Mid fossa next week
« Reply #39 on: January 17, 2012, 03:53:07 pm »
Liz, so glad you posted.  I am rooting for you for sure.  Thank you far having Zachary keep in touch here..for our sake. 
Steph
1.6 cm AN Translab with Dr.'s Friedman and Shwartz with HEI on 1-25-2012.  I am doing great!  Surgery saved my life :).   Be brave, have a great attitude, and hire the best surgical team!!!!

mindyandy

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Re: Mid fossa next week
« Reply #40 on: January 17, 2012, 07:37:16 pm »
Lizzy
So glad you are back at home relaxing. I have been looking forward to seeing your post. Take it easy and keep us posted on how your doing. Make Zach pamper you
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

lizzie1hoops

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Re: Mid fossa next week
« Reply #41 on: January 30, 2012, 10:57:37 am »
Hi everyone!

I know it's been a long time since I posted, I'm sorry.  The weeks since my surgery have been a real roller-coaster ride.  There were some days when I was really discouraged and regretted my decision to go ahead with the surgery, but things are looking up.   Now I'm through the worst.

I think I'm a bit behind on progress related balance. I really didn't get around the hospital floor like I should have, and spent a lot of the next two weeks laying down with my eyes closed.  Now I'm feeling less nauseated and tired, I'm working to make up for lost time.  We went to a few antiques shops yesterday - there's a balance exercise!

The swelling around my incision kept me from wearing my glasses until a couple of days ago, so not only was I dizzy, I couldn't see either.  I'm not a contact lens-wearer, but if I had to do it over I would get used to them before the surgery.  I had to wait an extra week to have the sutures out because of the swelling too.  I'm happy to report that it's almost gone now.  Glasses=on, vision=check!

Subjectively, I'd say my hearing is the same as before surgery, which is a miracle given the position of tumor.  The only facial nerve issue I seem to have is have a bad taste and funny feeling on the AN side of my tongue.  At this point I'm off almost all of the medications except ibuprofen for headaches and pills to help with the acid stomach left by the other meds.

Once again I want to thank you all for your messages of support and your prayers.  I'm so glad that now I'll be able to serve as a resource and cheerleader for others who are in the same boat.

Best wishes to all of you,
Liz
5x6x11mm right sided AN.
Surgery (middle fossa), Dr. Backous, Swedish Neuroscience, Seattle, 1/12/12 after 6 years W&W.

lrobie

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Re: Mid fossa next week
« Reply #42 on: January 30, 2012, 11:45:57 am »
Hi Liz,

I was hoping you were doing okay.  I have to admit that it sounds a little scary when you say that you were laying down with your eyes closed for the past couple of weeks.  I'm trying to imagine what it feels like and wonder if closing your eyes helps.  I've had dizziness problems while laying down for years now.  If I were to look to one side, the room would start spinning.  I would quickly move my head and it would stop.  Is that what it's like?

I wear contacts, but I was thinking that if I would be sleeping quite a bit, the contacts wouldn't be a good idea either because they would become dry. 

I can't recall if you had balance issues prior to surgery, but I've experienced the "OMG I better hang on to something" while in a store that had a lot of breakables.  I had my husband get me a cart!

Are you feeling the same way now...discouraged and regretting your decision?  My follow-up appointment is next Tuesday, February 7th.  I'm hoping to get more questions answered and make my decision.

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

lizzie1hoops

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Re: Mid fossa next week
« Reply #43 on: January 30, 2012, 12:24:56 pm »
Hi Lisa,

Most importantly, I want to say I'm not feeling discouraged now and I don't regret my decision.  I just had to keep reminding myself "I will feel better and it had to happen sooner or later." The surgery and all the unpleasantness that followed just seems like a bad dream.  I was very out of sorts from the anesthesia and several of the medications I was taking had nasty side-effects, so the laying down with eyes closed wasn't purely balance related.

It's funny, I spent a lot of time over the past few weeks thinking about how to describe balance problems and dizziness, and what a struggle it seems to be.

I had a few balance-related problems before surgery: particularly motion sickness and room spinning.  The motion sickness was so bad I couldn't even swim without feeling terrible and needing to lay down.  So far all I know post-op is I seem to be able to ride in the car without problems.  NOTE: despite having started since my AN was diagnosed and never having had this problem before, more than one ENT told me this is unrelated.  I'm very skeptical about that.  I'd love to hear if anyone else has struggled with motion sickness seemingly due to the AN.

The spinning thing felt like I was still but the whole room was spinning around me, is that what it's like for you?  In both cases I'd take dramamine or meclazine and lay down until it stopped.  Based on what I've read and heard from doctors it's hard to predict who'll have a hard time balance-wise after surgery, which stinks.

I hear you about the contacts and sleeping.  Nice to just be able to put on glasses if/when you want to, but the pressure on the incision is uncomfortable - at least for the middle fossa approach.

I wish you the best of luck with your follow-up appointment.  Don't be discouraged if a single logical answer doesn't present itself.  As many, many people here can attest, it can be a difficult decision.  I got 4 opinions in total and none were the same!  This forum is an excellent sounding board!

All the best,
Liz

5x6x11mm right sided AN.
Surgery (middle fossa), Dr. Backous, Swedish Neuroscience, Seattle, 1/12/12 after 6 years W&W.

mindyandy

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Re: Mid fossa next week
« Reply #44 on: January 30, 2012, 06:31:56 pm »
Glad to hear your doing well now Lizzy. You were very couragous through your journey. Keep up the postive progress and keep us posted.

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