Author Topic: Newbie - Awaiting surgery  (Read 4030 times)

Linda1947

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Newbie - Awaiting surgery
« on: June 21, 2012, 11:45:49 pm »
I was supposed to have surgery June 25, 2012, for a large AN. I decided to have a second opinion at the renowned University of Michigan hospital. I have a surgery date there of July 30.  I am so terrified about the post-surgical complications (reading, driving, symptoms, etc.). Why do people have trouble reading? I was looking forward to relaxing by the lake and enjoying new novels.
I would appreciate any advise anyone can give me.

One doctor does about 1400 of this a year. The U of M doctor does about 40 a year.
Thanks for your help.
Linda1947
LindaR

Cheryl R

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Re: Newbie - Awaiting surgery
« Reply #1 on: June 22, 2012, 08:25:35 am »
Linda, I would not call the post op recovery complications.     This is a major brain surgery even though does not actually go in the gray matter of the brain.    The cranial nerves are involved and going thru the outer layer of the dura.      The location of the tumor and how it has already affected the nerves plays a part in how the nerves have been involved.       Also on this site the newbies do not realize how many are on here for a time and do well and go off and back to their usual lives.       Yes we may have some adjustments of the one sided hearing loss or SSD.    The balance issues improve for most over time and for many if there is a temporary facial paralysis, that improves too.      For more severe cases there is more help available if over time it is needed.           The short term recovery really does vary for each person and you won't know till after how you are involved.         The first 2 weeks esp one feels very tired and possibly off balance.   Being active when one is able and getting out and walking helps.   There will be lots of naps.  This really does get better. At the time it can feel very slow.  Don't over do to prove you wil be "normal" again.      Even if you don't feel like reading for a while,then you can still sit by the lake and just rest and relax.                   To an Iowan here, that would be quite fun if we had more major lakes!  I do enjoy MI as we have a daughter in Lansing so have made a few trips there.     I would love to go back to Mackinac Island.
   I go to the Univ of Iowa and Dr Bruce Gantz who does close to 70 ANs a year.          Going to a dr closer to home has some advantage.    One can still have good care if going to a dr with experience.             The time before surgery is nerve wracking as we are scared and wish we did know how it was going to be.           Keep asking here any questions you have and know we can be of help!              I wish you well.                  Cheryl R 
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Linda1947

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Re: Newbie - Awaiting surgery
« Reply #2 on: June 22, 2012, 09:22:44 am »
Cheryl,
Thank you so much for responding. This is, indeed, a nerve-wracking experience. Maybe I should stop reading about everyone else because it influences me too much.
Thanks, again!
LindaR

Jim Scott

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Re: Newbie - Awaiting surgery
« Reply #3 on: June 22, 2012, 01:20:13 pm »
Hi, Linda, and welcome ~

Nurse Cheryl offered an excellent synopsis of the AN surgery experience that I cannot substantively add to.  However, I'll attempt to respond to your query regarding the inability to read that some post-op AN patients have to deal with.  First, this is not something that automatically occurs, post-surgery....but it can happen.  The condition is usually caused by the trauma to the nerves that are adjacent to the 8th cranial (acoustic) nerve and the effects are almost always temporary.  I had 'double vision' for approximately 72 hours, post-op (while still in the hospital) but it disappeared by the third post-op day.  Others have reported similar experiences.

As you read posts, you'll quickly come to realize that every AN surgery patient has a slightly different experience.  Yes, some have very frustrating post-op issues but most do not.  Because of many factors, the exact outcome of AN surgery cannot be guaranteed.  So, it is a risk - but one that has to taken.  Employing skilled doctors with extensive experience in performing AN surgery is a necessity.  My neurosurgeon had over 30 years experience in this field and he did a remarkable job of 'debulking', then overseeing the radiation of my 4.5 cm AN (in 2006).  I was driving again within a fortnight of my surgery and recovered rapidly, although I remain SSD and my balance isn't quite what it was pre-AN.  Then again, at my age, nothing is quite what it was so I can accept (and adapt to) the minor limitations involved. 

My suggestion is that you try to focus on having a good surgical outcome and of course, have confidence in your surgical team.  Should any complications arise post-op, you'll deal with them then.  Meanwhile, enjoy the summer weather and go right ahead and stock up on those new novels.  :)

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.

leapyrtwins

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Re: Newbie - Awaiting surgery
« Reply #4 on: June 22, 2012, 02:21:19 pm »
Linda -

although my AN wasn't large (it was only about 3 cms) I didn't encounter any of the post op issues you are concerned about.  I have no trouble reading or driving.  My biggest issue is SSD (single-sided deafness) and it's not the end of the world.  I opted for a BAHA (bone-anchored hearing aid), but even without it I'm far from what anyone would consider disabled.

I have no lake to relax by, but I spend at least a few hours every day reading.

U of M has a great AN program and some wonderful, experienced doctors.  If I wouldn't have had a wonderful, experienced doctor in my own backyard (Chicago area) I would have gone to U of M.

The Forum is an incredible place to read about others' experiences, seek opinions (but remember the majority of us aren't docs or nurses), get advice, and sometimes just plain vent.  But take what you read with a grain of salt.  Everyone's AN Journey is somewhat unique - and not everyone's experience will be your experience.

Best,

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

It is what it is

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Re: Newbie - Awaiting surgery
« Reply #5 on: June 24, 2012, 08:11:58 am »
I'm a newbie as well, so I have no experience to share.  I'm sending you healing thoughts instead. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

CHD63

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Re: Newbie - Awaiting surgery
« Reply #6 on: June 24, 2012, 12:45:27 pm »
Hi Linda .....

I do hope you can skip over the posts describing issues post-op ..... at least until your surgery is over.  Many, many AN patients have none or at least very few of the post-op complications described.  We are all uniquely created individuals and no one's experience fits exactly like anyone else's.

That being said, you may or may not have any issues with your vision post-op.  As Cheryl said, this is major surgery under general anesthesia so fatigue is a natural after effect in the first days post-op.  Some of it depends upon how much the brain was jostled during surgery.

I have had three craniotomies and only vision disturbances with the second surgery.  I did experience double vision after that one, which gradually subsided as I recovered.  No double vision whatsoever following the last surgery a year ago.

Many thoughts and prayers for successful surgery and uneventful recovery!

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