Author Topic: 9 months post op update  (Read 3588 times)

MAlegant

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9 months post op update
« on: April 19, 2009, 07:54:27 am »
So, here I am at almost 9 months and for those of you who are interested, here's the update:

Facial:
Still have slight weakness and pulling but it is improved so I imagine it will continue to get better.  The weakness is only visible to me.

The bottom third of the right side of my face is still numb but some feeling returns (only to disappear) from time to time.  The numbness does not bother me except that I'm always paranoid that I have food on my face so I still don't like eating in public.  When I do, I look like I'm OCD with the napkin.  ;)

I still have nerve pain which mostly affects my gums and tongue.  I am still experimenting with drugs (guess nothing much has changed since college!) but no solutions yet.  I often have to work very hard to speak clearly and this is emotionally difficult for a classically trained singer.  I used to be fearless about speaking in public, now, not so much.  Very humbling.

Eye:
Still gets dry but much less so.  I use drops but only occasionally.

Head:
Still feels some days like a soft-boiled egg but have only had a couple of headaches so I consider myself lucky.

Hearing and balance:
I have slight balance issues (my husband says I've always been off-balance), especially in the morning.
My hearing is still good, next hearing test is on May 19 so I'll know more then.

Cognitive:
I have some problems (word substitution and short-term memory issues) but nothing serious.  Some say it's age but if it is, it only appeared after surgery.

Emotional:
I am coping pretty well though I have bad days where I forget how lucky I am to be alive and concentrate on the things I've lost rather than the things I've gained.

Physical:
I am back to running 4 to 5 days a week and actually feel like I have more energy than pre-op.  I get massage therapy about once a week, which is helping both physically and mentally.

In the main, I am happy, loving life and have a much different perspective than I did before all of this.  There are many, many silver linings, too numerous to list, but I find one almost every day.

Thanks all,
Marci
« Last Edit: April 19, 2009, 08:15:31 am by MAlegant »
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

leapyrtwins

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Re: 9 months post op update
« Reply #1 on: April 19, 2009, 04:40:27 pm »
Marci -

thanks for the update on your recovery.

You've been through a lot - and it sounds like you still have a little way to go - but you are definitely making progress.

You've got a wonderful attitude - as always ;D

Keep up the good work,

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

Kaybo

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Re: 9 months post op update
« Reply #2 on: April 19, 2009, 05:52:50 pm »
Marci~
Wonderful recap - sounds like all is going pretty well and you have a handle on it if it still needs some improvement! ;D

Your OCD napkin comment made me think of napkins and my girlies - my SIL is a Children's Minister and works a lot with young parents/families.  She often points out that children do what they see modeled for them, not necessarily what you TELL them.  She LOVES to tell the story of my children and how they are (were - what happened ???) VERY neat eaters and wiped their mouths after every bite.  She then tells her audience that I have facial paralysis and cannot feel my face so I do that and that is what they had seen their whole life (until now that they are older and go to school!)!!  So, you never know...someone could be watching you and you could be the good influence in their life! ;)

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!

mk

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Re: 9 months post op update
« Reply #3 on: April 23, 2009, 12:44:39 pm »
Hi Marci,

I somehow missed your post, but was glad to hear your update. You always have such a positive attitude!
I am following your progress with interest since I am also dealing with trigeminal issues and wondering how they evolve and (hopefully) get resolved.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

MAlegant

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Re: 9 months post op update
« Reply #4 on: April 24, 2009, 01:32:24 pm »
Hi Marianna,
Have tried and failed Neurontin and Cymbalta and am now about to embark on Lyrica.  Are you on any medications?
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

mk

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Re: 9 months post op update
« Reply #5 on: April 24, 2009, 01:42:58 pm »
Not really, I only have reduced sensation throughout (including cornea and tongue). When I am really stressed out, or tired I may get the odd pulling sensation or dull pain, but nothing really serious. I deal with them with hot compresses or ibuprophene. But I keep wondering if the continued pressure on the nerve might cause further damage (AN still there, although darkened and hopefully dying...)
Hopefully the Lyrica will work for you and provide all the relief you need.

Best wishes,
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

NancyMc

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Re: 9 months post op update
« Reply #6 on: April 24, 2009, 01:49:04 pm »
Marci,
Thanks for the update and the good laugh out louds sprinkled through.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Jim Scott

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Re: 9 months post op update
« Reply #7 on: April 24, 2009, 02:09:00 pm »
In the main, I am happy, loving life and have a much different perspective than I did before all of this.  There are many, many silver linings, too numerous to list, but I find one almost every day.

Marci ~  Thanks for the good-humored, detailed 9-month update.  You seem to be progressing fairly well.  I quoted your conclusion because I think it is worth repeating.  I like silver linings!  :)

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: 9 months post op update
« Reply #8 on: April 29, 2009, 07:20:53 am »
Hi Marci,

I also planned to do a nine month update since it seems like a pretty big milestone and a  good time for it.  I'm really right behind you, I think your surgery was only two or three weeks before mine.  I'm glad to hear that Iall things considered you're doing really well.  I know you have room for improvement and hope things continue to get better.  As with all things, time is a great healer.  Keep on hanging in there.

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!

jerseygirl

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Re: 9 months post op update
« Reply #9 on: April 29, 2009, 09:27:16 am »
Marci,

Sounds like your life is already back on track but whatever post-surgery issues you deal with right now, expect a continuous improvement. You are not even a year out of surgery.


       Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

NancyMc

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Re: 9 months post op update
« Reply #10 on: April 30, 2009, 05:42:59 pm »
HIJACK ALERT!
Eve,
Is that really a 6 in your signature?  Wow!  Do you hold the Guinness record?
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

wendysig

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Re: 9 months post op update
« Reply #11 on: May 01, 2009, 10:15:32 pm »
Nancy,

I'm not certain, but I think Satman holds the record on the forum.  His an was 8cm.

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!

leapyrtwins

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Re: 9 months post op update
« Reply #12 on: May 02, 2009, 12:11:57 am »

I'm not certain, but I think Satman holds the record on the forum.  His an was 8cm.

Wendy -

you are correct.  Satman does hold the forum record at an amazing 8 cm.

Kaybo also had a very large AN, but I don't believe anyone ever actually measured it - they just defined it as "HUGE". 

Sorry for the hijack, Marci.

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

MAlegant

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Re: 9 months post op update
« Reply #13 on: May 02, 2009, 05:29:52 am »
It's okay Jan, I love hijacks.  I've been guilty of a few myself...

Thanks all for the words of encouragement.  Today I am very tired of the whole "new normal" thing, so know that your kindness does not go unnoticed. Just reading your comments makes me feel better.  And braver. 
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

wendysig

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Re: 9 months post op update
« Reply #14 on: May 02, 2009, 11:02:37 am »
Hi Marci,

I know that the "new normal" is something we all struggle with to some degree, and for someone like you with lingering pain and other issues it is exhausting at times.  Is the Lyrica still helping?  I hope it is.  Hang in there.

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!