Author Topic: My Mom has AN  (Read 12423 times)

qzan19

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My Mom has AN
« on: February 12, 2010, 05:40:18 pm »
  Hi Everyone,

  My Mom's AN was diagnosed at the end of January. She has a 1.5 cm AN. She is suffering hearing loss and ringing in her ear.  I think she also has a balance problem, too. Anyway, the doctors want to have surgery on the 2nd of March.  One of the things is, she is going to have surgery in Turkey (where we are all from).  I currently live in America, but I will be in Turkey during and after the surgery. My question is, what should we take to the hospital with us?  Also, can you recommend something that I can get from America which will help her?  She actually follows your forum every day and she is the one who found it. She mentioned to me about a type of eyeglasses which could help make any eye irritation after the surgery better. She told me that it is Dr. Curtis W.Keswick's invention.  Does anybody know what kind of glasses she is referring to?  Also she is going to have surgery in a different city than we live, does anybody know which transportation vehicle would be better for her?  She is going to stay at the hospital for 10 days and I want to take her home by plane, but do you think by car would be a better option? Thank you so much already for your help and concern.

    
« Last Edit: March 03, 2010, 03:25:46 pm by Jim Scott »

leapyrtwins

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Re: My Mom has NA
« Reply #1 on: February 12, 2010, 10:06:12 pm »
gzan -

welcome to the Forum.  I'm very sorry to hear your mother has an AN, but I'm confident she'll get through it.

I'm not familiar with the eyeglasses you mention, but they sound interesting. 

In my experience the less taken to the hospital, the better.  I never wore anything other than the gown and robe the hospital provided me with and although I brought my own toothbrush, they even gave me that.  I brought some books, but had double vision post op so I never read them; even watching TV didn't interest me.  I slept most of the time - fatigue post op is incredible.

You mom's balance problem should eventually get better once her surgery is over.  Initially it will probably be worse than it is now, but in time her body will adapt and learn to compensate. 

My surgery was about 40 minutes from my home and I took a car.  Some travel to other states and fly home via plane, but that just wasn't for me.

Best wishes to your mom for a successful, uneventful surgery and recovery.

Please keep us updated on her 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

qzan19

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Re: My Mom has NA
« Reply #2 on: February 12, 2010, 10:15:21 pm »
Dear Leapyrtwins,

  Thank you so much for your reply. It is very helpful. I will definitely let you know how everything goes. Thanks again.

JerseyGirl2

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Re: My Mom has NA
« Reply #3 on: February 13, 2010, 09:04:44 am »
   Also she is going to have surgery in a different city than we live, does anybody know which transportation vehicle would be better for her?  She is going to stay at the hospital for 10 days and I want to take her home by plane, but do you think by car would be a better option?
   

Your mother's doctors should be able to advise you on the best mode of post-surgery travel. I can speak only of my own experience, but I flew home across the U.S. 10 days following my acoustic neuroma surgery and had no problems. The "flying 10 days post-surgery" is pretty much the standard routine at the place where I had my surgery, and the prevailing thought seemed to be that airplane travel was actually preferable to a lengthy car trip following surgery. But, again, you should certainly follow the advice given by her doctors.

Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

moe

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Re: My Mom has NA
« Reply #4 on: February 13, 2010, 12:10:41 pm »
gzan,
Great that your mom is reading on the forum. Tell her to take a break from time to time- it can get very overwhelming. Hopefully she is reading the posts that just pertain to the surgery itself.
No use worrying about what "might" happen.

As far as the hospital goes, really just bring  her! A robe, some skid slippers (though most hospitals provide skid socks), some chapstick/lip gloss, maybe a large nightie.  Someone mentioned bring a tube of
eye lubricant, just in case the eye goes weak. (get the preservative free eye lubricant- i'm having a brain fart on the brand name)

She'll be home before you know it.....Then we'll go from there!

Good luck, any other concerns? We're here :) :)
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

qzan19

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Re: My Mom has NA
« Reply #5 on: February 15, 2010, 05:07:56 am »
Dear Maureen and Catherine,

   Thank you so much for your advice and suggestion. I bought some eye lubricant and non-skid socks so far. And in another web side, someone recommend "Saran wrap patch" in case if she has a problem with closing her eye. It seems like a normal food wrap. Do you have any recommendations if that's happen?
   My mom has an appointment with her doctor this wednesday. I will let you know, how everything goes. Thank you so much for your supports.

   

lori67

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Re: My Mom has NA
« Reply #6 on: February 15, 2010, 02:07:10 pm »
gzan,

The hospital will hopefully be able to provide the eye gel and eye drops, but it's a good idea to bring it just in case.  I would think they would also have something called an eye bubble to protect her eye in the event it won't close.  It's a bubble shaped clear plastic thing with adhesive around the edges that will go over the eye and help to keep the moisture in.  The saran wrap will work too but it's a little bit more work to get it on there and sealed, so if the hospital has the eye bubbles, I'd use those (and I'd also try to grab a few to bring home too!).

Other than that, I didn't use much of what I brought to the hospital either, other than a robe and slippers and my chap stick.  The hospital has everything you would need, so it's really just a matter of bringing comfort items.

I hope all goes well for your mom and we look forward to hearing how she is doing.  Have a safe trip!
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.

qzan19

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Re: My Mom has NA
« Reply #7 on: February 20, 2010, 12:45:43 pm »
 Dear Lori,

  Thank you so much for your reply. When the surgery date is getting closer, I'm getting more nervous. I want to make her as comfortable as she can be. I'm not quite sure what Turkish Hospitals provide, so I want to get everything in here, if the hospital will have it that's fine but if it doesn't then We will be ready. I bought the eye bubble from online last week, it still hasn't arrived and I'm going to leave in five days. Do you know in which store can I find them, if I need to buy one?
   My mom is the sweetest person you can ever meet. She is filled with life and enjoy every minute. I hope this surgery won't take that out of her.
   By the way it is always wonderful to know that you're all there to help and share. Thank you very much for that.

  Qzan

CHD63

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Re: My Mom has NA
« Reply #8 on: February 20, 2010, 03:12:51 pm »
Hi Qzan .....

You sound like a wonderful daughter.  Your mother will do fine with such good support from you!  My daughter came from her home for my surgery and it was wonderful to have her there.

Like Jan and Lori, I did not use anything from home except for the Chapstick.  With the IVs or a central line, the hospital gowns and robe are the easiest to manage.  It is good that you are prepared for possible eye involvement but I hope and pray she does not have that problem.  I had no facial or eye problems and had a very easy time with my recovery.  My balance was the biggest issue post-op so I used a walker while in the hospital.  Two years later, I barely know I had a problem with it.  I do have to be very careful in the dark and on uneven surfaces but my situation is a little different because I have had surgeries on both sides and thus no functioning balance nerves left.

Welcome to this forum and please let us know how you and your mother are doing.

Thoughts and prayers.

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

jaylogs

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Re: My Mom has NA
« Reply #9 on: February 20, 2010, 05:11:00 pm »
Hello there! So sorry your mom had to be a part of this "club" but we are glad you found us! You will get all kinds of great advice from everyone here, with a wide range of experiences.  My experience was that after 9 days or so I drove to my in-laws house, about 1.5 hours.  Then a few days after that I drove home, about six hours.  That wasn't too bad as I was able to lay back in my seat and sleep if needed.  I didn't suffer any from nausea but was definitely wobbly headed by the end of the trip and very tired.  Hope this helps!  Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

qzan19

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Re: My Mom has NA
« Reply #10 on: March 02, 2010, 05:27:49 pm »

  Hi everyone, my mom had the surgery today 03.02.2010

    Dear Jay and Clarice, thank you so much for your help. Sorry for my late reply. I was very busy about my trip in Turkey so I just could find time to thank all your help.
  My mom had the surgery today and now she is sleeping. She was taken at 8am and she returned back at 5:40pm. Today, the time couldn't pass. when she finally came back from surgery, she was shaking very bad. We made her wear a pajamas and covered her with blankets and we hardly stopped her shaking. So far her mind seems very clear. She talks with us, but she had (we believe) facial paralyzed on her left side. I am not quite sure that if it is permanent. My mom's doctor hasn't come and visited my mom yet.
    She has some pain on her right side of the head (which she laid on that side of the head during the surgery.) She can close her both eyes, but she cannot move her left side of her lips. I hope it is not permanent. The first question she asked us if she had facial paralyzed and I said that "it is too early to say it". But she knows that she can't move her left side of her lips.
    She occasionally asks what the time is and goes to sleep again.
    So far that's all the news, I hope tomorrow I'll return with better news. During that time please pray for my mom.

   Thank you so much for all your support,
     Qzan

Pooter

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Re: My Mom has NA
« Reply #11 on: March 02, 2010, 05:41:15 pm »

  Hi everyone, my mom had the surgery today 03.02.2010

  She occasionally asks what the time is and goes to sleep again.
     Qzan

Qzan,

I'm glad to hear the surgery is over..  I'm sure you'll get some more information when the doctor comes by to see her..  I keyed in on your statement that she occasionally asks what the time is and goes to sleep again..  I did something very similar after I was moved out of ICU and to a regular room.  Time, for me, moved EXTREMELY slow..  I would ask the time minutes apart but for me it seemed like hours (about drove Jenni nuts with me asking all time).

The head pain, and either facial weakness or parallysis are all to common complaints of those who just had surgery.  We like to say around here that the first 3 days after surgery don't count and not to come to any conclusions about long term affects of surgery based on the first three days.  After that, you should see a slow, steady progression of improvement.  If the paralysis is really just temporary facial weakness, be warned (and warn your mother) that seeing improvement from that is VERY SLOW...  I had my surgery almost 2 years ago and I still see improvements.  To the average person, you can't really tell there is still weakness, but I can tell and I still have improvement even now.  Many illnesses are talked about in terms of days before you get better, especially with facial weakness they talk in terms of months and years sometimes.  In fact, my surgeon told me that they wouldn't even begin to call any 'weakness' permanent until AT LEAST 1 year after surgery.  It just takes a LONG time..  Be prepared for that, and prepare your mother if she's told that it likely will be temporary weakness.

Don't forget to rest and take care of you also...

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

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CHD63

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Re: My Mom has NA
« Reply #12 on: March 02, 2010, 06:01:32 pm »
Qzan .....

So glad to learn that your mother's surgery is over.  As Brian said, the first three days (F3D) do not count in the recovery process.  After that she will feel much better and you will know more, as well.

My prayers continue and do keep us posted.

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

moe

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Re: My Mom has NA
« Reply #13 on: March 03, 2010, 09:44:40 am »
Qzan,
That was quick! Sounds like a successful surgery. The fact that she can close BOTH eyes is a good sign, that the paralysis will be temporary. It is scary though I'm sure.
Gentle hugs, and let us know what the doctor says.
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

qzan19

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Re: My Mom has NA
« Reply #14 on: March 03, 2010, 01:56:21 pm »
   Dear Maureen, Clarice and Brian,

    Thank you so much for your reply. It turn out the surgeant totally cleaned the facial nerve, so her facial paralyzed will be permanent. Even though after the surgery it seemed like she could close her eyes, it turned out she couldn't close the left one. Golden plate will be put on her eyelid.  Another thing makes me very upset is CSF leak. This morning when doctor was dressing the wound, the leak started around the wound. Doctor said that it was normal but it freaked me out. Also she has still sound on her left ear. She describes the sound as a wind blow in her ear. Now we'll see how it will go tomorrow. I hope everything will be better.
     Around noon, the surgeant finally came and said that he had to cut the facial nerve. Tumor covered facial and balance nerve, and he said he's never seen something that bad. But he added that 4months from now, he could do another surgery to fix the facial nerve. It cannot be 100% but improvement would be 70%.
     The good news is, my mom can stand up and go to the restroom by herself without any help. Today, she had a fever issue, but with medicine nurses took the fever under control. She started to eat too. So far she had, around 2 cups of water, 1 cup of apricot juice, three spoon soup (which gave her nausea).
     I hope, I'll come with better news tomorrow.

    Qzan
« Last Edit: March 03, 2010, 07:52:16 pm by qzan19 »