His name is Jean Claude

[grega]

Yes, Tracy Lynn, good thoughts and hardy prayers are, I'm sure, being offered up for you by so many people herein. 

Regarding post-op balance issues, I'm with JO .... "you may need physio..."  Most people's balance is greatly affected by surgery, but diminishes with time as your body's other balance mechanisms learn to compensate for the loss on the AN side.  So I think it's important to arrange physio (vestibular therapy) before the operation.  Difficult remembering exact details, but I think I started the first of 3 sessions several weeks after surgery.  And I found that this type of therapy is not offered at all locations.  So perhaps you should discuss this with your docs ....

Best to ya!
Greg

[Cheryl R]

Hi Tracy,     There is an Omaha gal who just had surgery recently and am not sure with who.     Her name here is skamper.    
I am not super far from you as am in central Iowa.      Many of us on the forum have been to Iowa City and a super neurotolgist there.  They do around 60 a year and do well.   I have NF2 which is tumors on both sides and have had 3 tumors and 4 surgeries.  
The first couple weeks will not be too super but then it slowly improves.       Do not overdo to prove to your self that you will be normal again.    It may take time but you will be better.     You may have a good day and over do and then a couple bad days.   That's happens to all of us surgery alumni.               Every dr has their own protocol in what they do.    Some people have been on steroids when come home and some haven't.     That may play a role in how you feel.          We all vary in how we feel post op.   How your body has already adjusted to the tumor will be part of it.        
You won't need much in the hospital.    A robe, lip balm.   Most places give you slipper socks.    I took pjs to get on once IV was capped.    You need easy ones as will have a large dressing.       If you wear glasses then take an old pair with the bow off the side,as won't fit with the dressing.       TV is about all most of us have felt like after and some not even that,  
You read here of some who have longer term problems but there are many who do do well and are gone and back to their normal lives maybe with some small adjustments and the hearing loss and maybe some balance issues.            Balance and facial issues do improve in time for most.
   Keep asking us questions and know the time before surgery is scary!      Many of us know this well!             I am much older than you and have daughters around your age and know that it would hard to be going thru at  your age.
                                  i wish you well!               Cheryl R
                                            

[sues1953]

Tracy Lynn,

Hi    I just read about Jean Claude, I am so sorry that you have to go through this!  It sure sounds like your not letting any grass grow under your feet.  I admire your ability to act fast.  I am having Translab surgery 2 days after you.  I have been dealing with this for over 4  months now and I'm still fighting the urge to cancel my surgery date.  My tumor is a little smaller than yours but I am about 3 times your age.  You are such a brave young woman!  I like how you are preparing for surgery and I have taken a couple of tips from you.  Thanks.

The only question I have for you, and I'm not positive that you have not posted this but did you say how many surgeries your Dr. has done?  I know you said you feel really comfortable with him and that's half the battle.  

I will be thinking of you and wishing you the best.

Sue in Michigan

[Tracy Lynn]

Sue,

I am having surgery with Dr. Britt Thedinger (Otolaryngologist/Neurotologist) and Dr. George Green (Neurosurgeon) at Nebraska Medical Center here in Omaha. They make a bit of an odd pair as Dr. Thedinger is such a jovial, positive man with a joking manner, and Dr. Green is very severe, and has very little to no bedside manner.  As a pair, they have conducted over 340 AN surgeries here in Omaha over the years. I did not ask how many surgeries they have conducted individually. I am 100% confident in them and their abilities.

Cheryl, I've ready Skamper's posts, and I do hope she is doing well. She had her surgery at a different hospital with different surgeons, but I can definitely relate to her posts about the bitterly cold winter we had in Omaha.

Since I'm almost SSD, my drs agree that I probably won't notice the difference if I have any further hearing loss. I'm certainly worried about balance issues as I get motion sickness very easily. I've had no balance issues so far, and Dr. Green believes my vestibular may be dead.

My mom, bless her heart has sent me new Pj's and slipper socks for the hospital.

[Cheryl R]

Tracy,   Sounds like you are handling the pre op wait fairly well.      Good you have some drs with AN experience as that is what is needed.           It is very hard when one wants to know exactly what to expect and we can't give you an exact answer.     I am retired nurse but only worked in a smaller hospital with a different type of pts than what this is.  So I did not have as much knowledge as wish I had pre op.   
I did not think I had any balance issues post op past my first surgery till walked outside and discovered that yes I did.      Outiside and large mall and bright big stores were hard at first.            Now your zoo could really be the exercise place with their hilly areas!
We have been there a few times.   Very nice.   
                                                                            Cheryl R

[Sue]

Hi Tracey Lynn.  I think you will get through all of this just fine and Jean Claude will be packing his bag and out the door soon.  I applaud your state of mind and obvious strength of character. 

I can't give you much advise on after surgery things, as I didn't get rid of my AN that way, but you will need a lot of rest.  Eat good food, keep hydrated, and don't be surprised if you have some trouble concentrating.  Reading, or watching TV or movies might even be too much for you for a little while.  It just depends on the individual. 

Best of luck to you,

Sue in Vancouver, USA

[ksiwek]

Tracy Lynn,

Is it weird for me to say that I am jealous that your surgery is right around the corner?  Something tells me that everyone on these boards understands how I feel!  I am supposed to deliver my baby on June 10th and then have translab on July 14th.  I found out about my tumor on 3/5 and it has been so hard waiting this out until I deliver.   We have similar AN situations.  Mine is the same size as yours and I recently turned 29...so I can relate.  Please send me a message if you want to chat more.  Please know that although I do not have any post op advice, I will be thinking of you and sending positive energy your way.  I know that we both will feel better when we are on the other side, the recovery side, of this journey!  God Bless, Kris

[Tracy Lynn]

Cheryl- We are lucky to have such a fantastic zoo. I haven't been there in a few years, so I will make that a goal before the end of summer to go, even for a few hours. Sorry, I don't expect anyone to tell me what to expect, I was curious if any posties had pieces of advice. I understand that everyone's is different. Since I'm staying with my parents, I'm trying to do as much as I can to prepare pre-op so I'm not as much of a burden. I know that this is what family is for, but it makes me uncomfortable. I think the hardest part of this is going to be accepting help and trying not to get my undies in a bunch by trying to be independent too early.

Thank you Sue I think my dad's cat will take ownership of me while I stay there. I have no doubt he will be keeping watchful eyes on me and how much I sleep. The more I sleep, the longer there is a warm body for him to lay on.

Kris, congrats on your pending baby! Thats fantastic! I imagine that will be difficult enough to deal with, aside from the pending surgery. I'm sorry, I sound like a horrible person being impatient, I can only imagine how it would feel to have to wait so long. Are you having a boy or a girl? A small part of me is grateful that I will be home so much as my new niece is expected 4 days after my surgery. I'm hoping to see quite a bit of her, even though neither she or I will be up to it at first.

[Pooter]

Tracy Lynn,

First off, welcome to the forum..  We're glad you're here..

Next, as a postie, my biggest advice would be to take things as they come, relax, don't be too proud to accept help when needed.  Sue is right that everyone's journey isn't going to be the same as someone else's..  One thing that you'll learn through this journey is patience; with yourself, with others, etc..  Don't get overly worked up about what MIGHT happen and focus your energy on adapting and overcoming the things that DO happen WHEN they happen.

If you want one person's account of their journey from pre-diagnosis to 8 months or so post-op.. Read my blog (listed in my signature).  It very likely won't be exactly the same for you, but you can get a general idea of one person's experience with surgery on a large AN.

Regards,
Brian

[Tracy Lynn]

Thanks Pooter!

I have read your account of your surgery. I know it wasn't the same, but it helps nonetheless! I have borrowed your "Brain Booger" analogy as my brother is trying to find a way to tell my 7 yr old nephew, and he seems to think he will grasp the concept. He's already asked if the doctor is there to "pick" my brain booger.

Jean Claude keeps moving and my head hurts, but I wouldn't cry if they call me tomorrow and suggest surgery earlier now.

I plan to play the last softball game before my surgery (2 days prior) and I certainly will consider it a massive accomplishment if we win.

Everyone here is fantastically supportive. I don't know if I could've made it this far without all of the advice and supportive thoughts.

Bless you all. Thank you immensly.

[jaylogs]

Tracy, I was definitely in your shoes as far as wanting help, but amazingly once you get on the other side, it's pretty easy to accept it cuz you really will need it.  I had absolutely no problems asking for help during that time, which is way beyond my usual thing!  Like Pooter, I also have a blog thing of when I went through all that (look in my signature block).  I know when I was in the pretreatment options and was going through other peoples experiences, I appreciated it!  Take care and keep up that wonderful attitude!
Jay

[TP]

Tracy Lynn, first I want to say I am sorry you have an AN.  I feel you have done a great deal of research which will be very helpful post surgery.

My advice is to rest prior to your surgery and rest, rest, rest after your surgery. You won't have a big appetite and sleep is very important.  However, if you are able to get up and walk after your surgery (I had leg pain due to being on my side for 9 hours for the surgery) so walking in the hospital was difficult for me.  However, once I got home I walked when I could but slept as much as I could. I had some issues and additional surgeries but I recovered nicely and was back to work in 2.5 months and exercising as well. Your family and friends will want to bring you food and just remind them they are not feeding an army. I had some taste issues after my surgery so certain foods tasted differently after my surgery. I did like sucking on hard candy which seemed to help with my strange metallic taste in my mouth for a few months. Visitors came by but if you start to tire, don't feel bad in asking them to leave so you can get rest. Bottom line if you get a fever and it starts to rise, call your Dr.

My prayers are with you!

[Tracy Lynn]

Jaylogs,

Thank you! I will have to check out your blog. I have read everything I could possibily get my hands on since I've found out about JC. I figure that its not possible to be over-informed.

TP,

I'm sorry to hear that you were out of comission so long when it came to movement after your surgery. I am indeed hoping that I will be blessed with good mobility. I've read often about the "wobbly legs" and the "wonky headedness". I understand that getting up and moving as soon as possible and to keep moving whenever possible is important to recovery, while walking the fine line of overdoing things.

My stepmom called and asked the poor nurse a barrage of questions, so I think she feels better about my aftercare. The nurse seemed pretty optimistic about the healing process. Then again, she hasn't gone through it. She did ask my stepmom if she's going to be able to make me "get up and move", because most of what I will do is sleep. I think my stepmom will definitely be able to motivate me. She is a diligent caregiver, and won't let me forget when its time to eat, take pills, pee, etc.


I may have trouble reminding her that I won't have my regular appetite, but I think that is the lesser of evils. Someway we will make things work.

I was looking farther at the ANA website, and I do so wish I already had ordered a SSD Right side pin, because my co-workers often forget that I cannot hear them through my right ear. I have had a few accuse me of being a "snob" because I don't respond to their questions. Not intentionally of course, but its hard to explain to someone the extent of your hearing loss if they haven't been exposed to it before.

[knakag01]

Welcome Tracey Lynn, although I am sorry we had to meet this way. Your positive attitude is wonderful and will be so helpful during this sometimes tough journey.

I too am having translab surgery, just a day after you! Thank you for posting your questions about post-op here. I have been getting a bit nervous about everything lately and reading the replies has helped (I am so thankful for this site and the amazing people on it!)

I am in CA and will be at Stanford with Dr. Jackler on the 19th, but my thoughts and prayers will be with you on the 18th.

Take care,
Kim

[moe]

Hi and Welcome, better late than never!

Sounds like you are right on top of everything. Now just stay busy and exercise IS good, as much as you can. You will recover so much quicker. And you are young, that helps. I can see you out there playing softball again and soon. Give it a couple of months though! You are experiencing the dizziness stuff now, so it probably won't be as bad once you get  JC out and start balance/walking routines. Walking is the best thing to do post op, looking straight ahead, not down.

My AN was complicated, because it had been in there for way too many years (5-10 years too long, I was told), hence all the procedures and surgeries. But surprisingly I had little to no dizziness,balance issues post op because I had already compensated. I had been walking around for years with this vague disequilibrium, light headedness. One doc went on to say I had Meneire's and put me on medicine for that. Which I know I didn't have because I did not have vertigo.

Anyway, as others have said- what to expect post op varies from person to person. Expect  to just take it slow and easy, walk, rest, walk, sleep, rest, drink, etc......Calming CD's or books on CD are a great idea. I had post op headaches and EXTREME fatigue. But then I lost blood during the surgery, which is NOT normal. So I was more short of breath and fatigued than anything.

I also had translab and the incision is behind the ear. Other than the small amount of hair that is cut (I had short hair at the time) no one could tell I had brain surgery.
YES it is brain surgery, as Jan mentioned. And it is also equivalent to TBI being that the brain is exposed. So you have to give yourself lots of healing time,and just take it as it comes.

The part of your last post:

 I have had a few accuse me of being a "snob" because I don't respond to their questions.
Ouch that hurts! The pin is a good idea, but then people look at you and the pin up close and say "what's that?" and you have to explain why you have the pin on, so sometimes it's just easier to say "I'm deaf on my _______side."
I just sound like a broken record --

Dr. Britt Thedinger-that name sounds so familiar! I think he went to Rockhust high school in KC, the all male high school. I went to St. Teresa's Academy in KC, MO the all girl highschool. Looks like he went to KU (go Jayhawks!) I went to KU for nursing school. I remember him being this gorgeous hunk......anyway, hang in there stay busy.

One other thing, I was hoping they would take more "fat" from my abdomen, but it was just a little dent's worth. Darn

Keep up the good positive spirits, everything will be OK!
Maureen