Author Topic: 7 Weeks Post-Op - Need Help  (Read 12228 times)

swhite

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7 Weeks Post-Op - Need Help
« on: October 17, 2009, 05:53:31 pm »
I had an approx. 7cm AN removed 7 weeks ago (behind right ear) after being rushed to William Beaumont Hospital in Royal Oak, MI (friend called 911 - I thought I was having a stroke).  I had no symptoms prior to this.  I found myself in OR within 24 hours since the AN was bleeding on the brain.  I am 47, full time working mother of 2 teenagers and a wonderful husband of 23 years.  I was an active athlete and totally surprised by this sudden change of life for me and my family.  I have obvious balance issues, facial paralysis, no hearing in my right ear and my right eye is not working in conjunction with the left eye (I often have double vision).  I have PT/OT 3xweek and determined this will get better with time and prayer.  I am seeking help and advice as we struggle through this. ANA was brought to my attention by my therapists and my loving sister.  I hope to find local support too.  Struggling :(
Retrosigmoid 8/27/09 undiagnosed and suddenly; no symptoms prior; approx. 4cmx2cmx2cm; right-side, facial paralysis/weakness, SSD and tinnitus. Baha surgery 11/9/10.
Gamma Knife 8/11/14 at UPMC w/Dr. Lunsford after regrowth detected June 2014

Lilan

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Re: 7 Weeks Post-Op - Need Help
« Reply #1 on: October 17, 2009, 06:13:13 pm »
SW, wow. Welcome, and I'm happy you're alive! Goodness on the size and emergency nature of your AN.

You've come to the right place -- browse around and before long I'm sure you'll have a long list of welcome messages here, and some answers on how to find support groups and specialists.

At only 7 weeks out, you are sure to have significant improvements still to come. Then you'll have to deal with the issues that remain one by one. Particularly the balance and double vision I would think are expected to improve with time and balance therapy? Was your facial nerve severed, or might it improve simply with time also?

I'm sorry for what you had to go through, and hope the forum will be a help to you.



Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

tenai98

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Re: 7 Weeks Post-Op - Need Help
« Reply #2 on: October 17, 2009, 06:21:31 pm »
SW
one step at a time, one day at a time. I'm almost 7 months post op but my AN was small...wow on the size of yours....keep faith and exercise daily, even a little is better than nothing
Jo
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

another NY postie

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Re: 7 Weeks Post-Op - Need Help
« Reply #3 on: October 17, 2009, 07:09:46 pm »
I am stunned by the size of your AN.  Thank goodness you are ok.  There is so much information on this site and so many people who will have shared similar experiences and can help you in your recovery and healing.  Just keep asking questions and people will share their journey.  You will find  tremendous help, support, and most importantly people who truly understand what you are going through because they have been there.  Day by day, baby steps and you will heal.  Hang in there!
Cheryl
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

cindyj

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Re: 7 Weeks Post-Op - Need Help
« Reply #4 on: October 17, 2009, 07:25:44 pm »
Wow, how incredible!  So glad you sought medical help quickly - unbelievable that you had no symptoms.  What a shock for you and your family.  You have definitely found a great resource in this forum.  I see that there is a support group in MI, in West Bloomfield.  Is that near you?  If you haven't contacted the ANA office, you may want to ask them to send you info they have, including a Willing to Talk list of AN patients around the country.

In the meantime, ask any questions you may have - someone out here will have some good advice or idea for you, I'm sure.  We do wish well!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

cyrmom2

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Re: 7 Weeks Post-Op - Need Help
« Reply #5 on: October 17, 2009, 08:09:39 pm »
Thanks goodness you connected with this group!  The recovery process can be long and frustrating but this site will be a tremendous help.  I don't know how to type a cyberspace hug but know that I'm sending you one now. Hang in there and I'll be praying for a complete recovery for you!

Cyndi
(also 47 and an athlete)
diagnosed 7-27-09 4 cm CPA
12 hr translab 8-25-09
Dr Chicooca & Dr Welling at OSU/The James
sliver of tumor remains on brain stem
left SSD & facial paralysis (was 6/6, 2-3/6 at 9 weeks, 1/6 within 4 months) 6 month MRI on 3-17-10.

Mickey

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Re: 7 Weeks Post-Op - Need Help
« Reply #6 on: October 17, 2009, 08:21:05 pm »
Hi SW, You have really had something to deal with. Herei s hoping the harder part of it all is over. Wishing you a speedy recovery. Prayers are with you! Mickey

sgerrard

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Re: 7 Weeks Post-Op - Need Help
« Reply #7 on: October 17, 2009, 08:23:10 pm »
Hi SW,

I also would like to welcome you. While most ANs are smaller, 7cm is not a record; Satman had an 8 cm one removed a year or so ago, also by way of a surprise trip to the ER. Collectively there is a lot of experience here with facial, balance, and eye issues, so I am sure you will find some useful information. I know you will find some very supportive new friends. Please make yourself at home.

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.

Kaybo

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Re: 7 Weeks Post-Op - Need Help
« Reply #8 on: October 17, 2009, 08:27:02 pm »
SW~
Hello and welcome to the group that we don't want anyone to have to join, but are glad you found us.  I would LOVE to chat with you sometime.  PM me your number, if you would like and when is a good time to call.  I am here to tell you that it will get better and your life will go on - maybe a little different than before - but it is still good on the other side!  Check out my blog - click on the world on the left...

Hope to hear from you soon!

K  ;D
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!

nancyann

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Re: 7 Weeks Post-Op - Need Help
« Reply #9 on: October 18, 2009, 03:19:24 am »
S:  So glad you found this site too ! !   I'm sure this has thrown you for a loop - you didn't even know you had an AN ! !  Geez louise ! !
Please ask us anything you have questions about.  We are all ears (well, at least 1 per person !).
Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

pjb

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Re: 7 Weeks Post-Op - Need Help
« Reply #10 on: October 18, 2009, 07:10:43 am »
Hi, welcome I to am new to this site and since I received so many messages from others who are going through the same thing I cannot tell you how it helps.  It is amazing with the size of yours that you did not experience anything prior. I see that you are going to a PT/OT, I have been going to a Vestibular Therapist who I feel has helped me tremendously I just would like to suggest maybe looking into that also. It is going to be a slow process and we are all here if you have any questions or just to  vent our friends and family are helpful but do not completely understand what we are going through....
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

epc1970

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Re: 7 Weeks Post-Op - Need Help
« Reply #11 on: October 18, 2009, 08:15:55 am »
SW
I cannot imagine how your world must have been turned upside down with the way your AN was discovered! You've had a tough surgery for a big AN-you are still in the early phase of recovery-I know it probably seems like forvever already. I had no comprehension that recovery would take so long but here's the good news....it does get better-gradually. This forum is a great resource for information and support-use it often. Take care!
Erin

CHD63

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Re: 7 Weeks Post-Op - Need Help
« Reply #12 on: October 18, 2009, 08:45:59 am »
SWhite .....

Just want to add my welcome to this Forum.  You are an amazing case.  Sort of mind-boggling that you did not have symptoms until it was urgent.  Thank goodness you sought and received immediate care!

Although most of us are not medically trained, we have collectively experienced a multitude of AN related issues and thus have done extensive research.  Keep posting and expressing any concerns you may have ..... we are here to be another source of information and support.  You are not alone!!

My thoughts and prayers as you continue with the recovery process.  Rest, exercise as you are able, and stay in tune with what your body is telling you so you do not overdo during these early weeks.

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

lori67

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Re: 7 Weeks Post-Op - Need Help
« Reply #13 on: October 18, 2009, 08:50:05 am »
Wow!  That's a whopper of an AN!  I know things are difficult right now, but just remind yourself you are lucky to be alive - although sometimes I'm sure it doesn't feel much like luck, I'm sure.

7 weeks out is still very early - I'm sure you have lots of improvement to look forward to.  Unfortunately, sometimes it comes more slowly than we'd like.

The fact that you are an athlete will probably help a lot in your recovery - you were probably in good physical shape before surgery and will be more motivated to return to that level of activity.

It does get better - in the mean time - your new AN family will be here to get you through.

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.

Nickittynic

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Re: 7 Weeks Post-Op - Need Help
« Reply #14 on: October 18, 2009, 10:12:11 am »
Welcome! I'm new here, too.
I'd like to echo what everyone else has said with "wow!" :o. I can't imagine not having any time to "prepare" for what you're now facing.. though I don't know if there is any way to fully prepare for it.   :(
I hope you find the support you need here!
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy