Author Topic: Newbie from the UK  (Read 5871 times)

leapyrtwins

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Re: Newbie from the UK
« Reply #15 on: January 09, 2010, 11:43:55 am »
Sharon -

glad to see you're back among us.  We've been wondering how things went.

Sounds like you've had some issues, but are well on the road to recovery - I certainly hope so  :)

I don't have any advice on eye issues, but the forum is full of posts about gels, eye weights, etc., so there's lots of info here if you search.  Also, I'm sure others who had these types of issues will be happy to help you with their experience and advice - like Donnalynn just did.

Happy Belated Birthday.  Please keep us updated on your progress,

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

Rich56

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Re: Newbie from the UK
« Reply #16 on: January 10, 2010, 08:53:30 am »
Hi Sharon,

We have been thinking of you, and hoping everything was okay.

It is good to read that you're finally home, but we are sorry that you have had such a rough time.

Our thoughts will be with you, hoping that your recovery goes better than the last four weeks.

Wishing you a Happy Birthday, at least the surgery is behind you,

Rich & Scarlett
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

wendysig

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Re: Newbie from the UK
« Reply #17 on: January 10, 2010, 12:22:47 pm »
Sharon,
Welcome back!  I'm also sorry to hear that you're having such a tough time.  Recovery from AN surgery can feel like one step forward two steps back so it is important to listen to your body and get the rest you need whether you want to or not.  As I learned myself, recovery is a lesson in patience.  I was lucky (?) enough to have my surgery in the summer and was able to get out and go for walks within a couple of days of being home.  Maybe if someone goes with you and you use a walker or cane you can get outside for at least a short walk once in a while just to offset the cabin fever you must be feeling.  Hang in there, it takes time, but things do get better.

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!

moe

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Re: Newbie from the UK
« Reply #18 on: January 11, 2010, 09:13:07 am »
Hi Sharon,
Also sorry to hear about your long hospital stay and eye problems. Also wondering if your facial nerve was stretched or cut.
Let us know what your specific issues are. We love to chime in with what works for us!
Very important to keep that eye lubricated if it is not closing on its own.
There's Gels, drops, don't know what you have there in the UK.
I have to tape my eye shut every night with a think strip of paper tape, and then a nice soft eye pillow. I'm addicted to my eye pillows.
I like the lavendar scented ones, and it does not seem to irritate my eye.
Remember to take it real slow= no need to rush. You have the rest of your life for that!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Jim Scott

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Re: Newbie from the UK
« Reply #19 on: January 11, 2010, 05:07:17 pm »
Sharon ~

I'm one of many that are dismayed to learn about your post-operative difficulties and I'll keep you in my prayers as you continue your recovery.  Things do get better!

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.

sues1953

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Re: Newbie from the UK
« Reply #20 on: January 11, 2010, 06:13:36 pm »
Dear Sharon, 

My name is Susan and I want to thank you for sharing your ordeal.  I pray that you are doing well.  Why were you in the hospital so  long?  What kind of surgery did you have?  What were the complications? 

I just found out last month that I have a 3.2 cm NA and they want to operate ASAP.  I am so fortunate to have found this site it has really helped.  I am 56 years old and in great health. thank God.  How old are you?  I am finding that I am older than most and my tumor is larger that most.  It is so scary.

Let us know whats going on as soon as you can.  God Bless you.   Susan
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

wendysig

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Re: Newbie from the UK
« Reply #21 on: January 11, 2010, 07:05:23 pm »
Susan,

There are plenty of us around in your age range, I am 56 (55 at the time of my surgery) and there are many more of us in the forum around this age.  I agree the AN diagnosis is pretty scary but you've come to the right place for undersatnding and information.  Each persons journey is usually pretty different due to size, location and whether or not the AN in question is sticky and therefore stuck ot other nerves (unfortunately if it is it's usually the facial nerve). Soem people have complications butmany, like me, end up pretty lucky to have no complications or nothing too difficult to deal with.  I had a minor problem with my eye that cleared up in about a month, a slight balance problem and being SSD (single sided deaf).  My balance has improved, but is not 100% but still improving and BAHA (a bone anchored hearing aid) has helped my problem with being SSD.  There is life after AN and it is good.

Sharon - Sorry for the hijack - I hope you're feeling better.

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!

shabuck

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Re: Newbie from the UK
« Reply #22 on: January 21, 2010, 07:02:43 am »
Hi Susan... re- my lng stay in hospital i think it was because the tumour had to bed scraped from my cerrabulum which meant recovery was slower and i also had a bad reaction to the aneasthic... great diet...lol I lost a lot of weifht, its called the VOMIT diet ha ha
Please forgive the typo's my eye is extremly painful so not using the pc too mufh
Good luck
Sharon xx
2cm left side.. surgery booked for 3rd dec 09. St Georges London - Professor Bell.

pjb

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Re: Newbie from the UK
« Reply #23 on: January 21, 2010, 09:29:19 am »
So glad you are on the road to recovery and a good sense of humor with the weight loss. Hopefully the worst is behind you and now focus on the healing just take it nice and slow it will get better.

Best Wishes,

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

stevecms

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Re: Newbie from the UK
« Reply #24 on: January 21, 2010, 01:53:27 pm »
hi sharon,im also a member of the uk an team so welcome to you.glad to hear u ok of sorts but it will take time.all the best steve :)
4 cm acc neuroma 99.9% removed queen elizabeth hospital 6 sept 09 by dr walsh.thought it was trigeminal neuralga,lots of facial pain for 18mths,now deaf on rh side little taste and ear pressure.13 hour surgery.