Just found out yesterday....

[Sue]

Hi Adrian and Sam,

Just wanted to be among those that welcomed you to the forum and I think, Adrian, that Sam is a keeper!!

To be honest, I'm a little surprised that you have to wait a month to talk with your specialist.  That's no fun waiting that long. When I got my call from the neurologist about what was wrong with me, they had set up an appointment THAT DAY, with a neurosurgeon. Scared me a bit, I must say.  Then I was shuffled off to a different doctor and had to wait about 4 days for that appointment. So, once I got my diagnosis (which took a year!), things moved along quickly. 


This is a link to information regarding some aspects of having an AN.  I think you'll probably relate to some of these symptoms.  Everything you are experiencing sounds like what so many others have gone through.

http://www.backgroundfacts.com/menieres/COGDIS.htm

The things that seem to bother people the most insofar as magnifying symptoms seem to be caffeine, asprin, too much salt and possibly sugar, especially if you happen to be a diabetic, which you aren't. Loud places make tinnitus worse. You might find yourself uncomfortable at the mall now, or going to Wal-Mart or places like that. Everyone is a little different in what bugs them. You'll learn what are your triggers and what you can live with comfortably.

Sounds like you and Sam are capable, smart young people who will get through this with flying colors.  I do wish you all the best and hope that your eventual treatment and recovery will go off without a hitch. 

Take care,

Sue in Vancouver USA

[Crazycat]

Hello Adrian,

   Please do not assume that artificial sugars caused your A.N. In my case, I never touched the stuff until recently and look what I went through!!

          Paul

[Samantha n Adrian]

Thank you for your responses.  I go see the Dr. tomorrow regarding my MRI and my initial options.  It is very comforting that many people advise not to settle, that you do have choices on who operates in your head.  I will definitely pick out the best.  Has anyone had their AN operation at Shands in Gainesville FL @ UF?  I heard that Dr. Friedman is one of the best.

I’ve been wondering about post-op symptoms.  Often times when in a crowded place, sometimes just in a grocery store, I feel “claustrophobicâ€? and I get dizzy like the rest of my surroundings are moving.  I also noticed this a few weeks ago @ Sea World when amongst many people.  Does this ever go away or is this a life long symptom? 

Does the scar from the incision behind the ear heal properly or will it be very visible post-op?

As I mentioned in my last post about stress, and I received some good comments regarding stress, fatigue and the exasperation of dizzy and numbness symptoms.  I mentioned that I have a high stress job and how my symptoms are heightened at work.  Does this ever change post-op?  What type of careers do many of you post-op “survivorsâ€? have?

I’m sorry if my questions are a bit “repetitiveâ€?.  I was very tired last night when I wrote my post and I never asked the questions specific enough.  This forum is great and it has restored my faith in people.  This has given me such a great amount of peace, comfort, and knowledge.  Thank you!  Even though we never want someone new to join our “clubâ€?, I can’t wait until I can return the favor to someone who is terrified of their new situation.

Adrian

[Obita]

Hi Adrian and Sam:

I have heard of Dr. Friedman and Shands.  Have you done a search on here to see if others have posted about him?

The incision won't be noticable after a few months or less.  Your hair will cover it no matter which approach your surgeon uses. 

I am in sales is a busy, crazy, huge lighting showroom.  Post op, I went back part time for two weeks before I went back to full time.  It worked great for me to ease back into the workplace. 

That feeling you get in the grocery store should get better after your vestibular nerve is taken out with the AN.  Your good side will compensate for the loss.  I had no trouble at all after the first two weeks post op.  I did go to a big furniture store a few days after I got home from the hospital.  Big mistake.  I wanted to run.

Good luck tomorrow, Kathy

[linnilue]

That claustrophobic and or crowded feeling is only too common and for me it actually got worse right after radiation but it is better now, 2 1/2 years later.  But I must say I still have those grocery store moments, especially if the weather pattern changes, low pressure and humidity.  crowded rooms still drive me crazy but are more tolerable, especially if I get up and remove myself for a few minutes and then go back in.  Also, stress is much more physical for me since the AN was dicovered and my symptoms worsen with the stress.  Stress is not good for any of us but you really need to pay attention to the causes and try to avoid those times or at least control them.  You should buy Dr. Black's book "Living with a brain tumor" (Amazon) it gives a wealth of information and will help to reassure you and recognize why you feel the way you feel.  Rest is extremely important and your brain will let you know when it's time to take a break or a nap.  I have heard that Dr. Friedman in Gainesville is good and actually there have been many AN studies done there as well.  For awhile post-op symptoms can get worse before they get better because the other side of the brain has to learn to take over.  You might need to do vestibular rehab which will give you the tools to deal with the vertigo, imbalance, even reading can be a bit difficult but a good therapist will help you through this period.  I do major political fundraising for the democratic party but I limit the functions that I will host and if I feel I can't do it, I don't.  talk aobut stress during an elction year and now already things are busy but I have already turned down one event because I jsut don't have the nergy but will do another in August.  I am very lucky that I can pick and choose becasue honestly i couldn't work full time.  I had radiation damage (linac) and I am still recovering and may hae to accept my life as it is.  My big mistake I will admit was not getting a second opinion because my friend the neurologist told me not to and not to read too much and not to go on the internet because it would scare me..BIG MISTAKE...I wish I had known about this site becasue these people know what they are talking about.  You will see it all and read it all here.  Best of Luck tomorrow, I'll be thinking of you and Sam,  Holly   

[leapyrtwins]

I had retrosigmoid, and I am quite happy with the incision.  I'm 6 weeks post op and it's hardly noticeable.  If people know to look for it behind my ear, they'll see the "tail end" of it, but that's about it - and I wear my hair short.  Actually by the time my stitches were removed, 10 days after surgery, my hair was already growing in and covering the scar.

As for work, I'm a controller (accountant), which basically means a desk job.  I returned to work part-time 2 1/2 weeks after surgery; full-time 5 weeks after.  Only problem I've been experiencing there is tiredness.

[Jeanlea]

Hi Sam and Adrian,

Sorry to hear you have to join this group, but glad that it is here for all of us.  I felt a little dizzy in busy places shortly after surgery, but that has gone away.  I had the translab procedure and the scar is really hard to see now.  The part that is on my neck was put into one of the folds on my neck.  The rest is under my hair.  I tried to find part of the other day and I couldn't.  I was back at work after 8 weeks.  I was teaching third grade.  The first two weeks were half days, although I stayed the full days for several of them.  I have been lucky enough to have no trouble with fatigue.  I didn't notice any particular cognitive problems. 
The fact that you are in good shape now will be helpful to you.  My anesthesia person said being in good shape helps a lot with recovery.  I'm 22 months post op now and can do everything I could before surgery.  Hope you get a lot of good information from your doctor tomorrow.

Jean

[satman]

hi Adrian,my name is John and i had one that was exceptionally large,around 8cm, so im told.
my surgery was  behind my ear, and they barely removed any hair.
i am 3 months post-op(postie),and cannot see a scar because my hair
covers it,just as yours will.I was in surgery for 17 1/2 hrs,spent 6 days in icu,3 of those were in comma that they
put me in,15 days in hospital,3 weeks at in-patient re-hap,and now i go to outpatient re-hab 3-4 times wk.
i still have some balance issues,some eye issues,and some eating issues,the left side facial palsey ,and to top it off i walk like Ozzy Ozbourne.Aot of this is temporary ,i hope,
and one thing everybody on this forum tells me"it gets better with time"is absoluteley true.i dont mean to scare you,just want you to know that,yes ,it is a long hard road, but with the people on this forum,a little faith,alot of hard work(therapy),and Sam,(my wifes name)you will get through this,no matter what.Remember,you wont feel a thing.i am 41 and never had surgery before.my wife is 37 years old, and i dont know how i would have got this far without her.seeing her strength has made me stronger.you got Sam and the forum, so you've pretty much got this thing whooped.I,m on here everyday if you have any questions for me,best of luck.
p.s.while writing this my surgeon called, and since my nerves are damaged so bad,i get to have a 7-12 jump(surgery)august 3rd.
Good news?not sure but i've got to deal with it.scared?yes.I WONT FEEL A THING !
 

[leapyrtwins]

John -

had to read your post twice to make sure I read it correctly.  8 cm !!!!!  17 1/2 hours !!!!!
I can't even imagine.  God bless you!  I'm not sure what a 7/12 jump surgery is, but good luck with it.

[satman]

thanks leap,i'll tell ya,the whole thing threw me for a loop too.

[satman]

i'm sorry leap,the 7-12 jump,i believe,is where they take the 7th nerve,which controls your face,and connect it to the 12th nerve,which controls your tongue. the whole point is to get your face[palsey]working right again,other people on the forum have had it and probably know much more about it.

[Jim Scott]

Thank you for your responses.  I go see the Dr. tomorrow regarding my MRI and my initial options.  It is very comforting that many people advise not to settle, that you do have choices on who operates in your head.  I will definitely pick out the best.  Has anyone had their AN operation at Shands in Gainesville FL @ UF?  I heard that Dr. Friedman is one of the best.

 

Hello, Adrian - and you're quite welcome.  I'm glad you're so willing to accept some (collective) advice and that you're doing what is both prudent and practical - for you. 

I’ve been wondering about post-op symptoms.  Often times when in a crowded place, sometimes just in a grocery store, I feel “claustrophobicâ€? and I get dizzy like the rest of my surroundings are moving.  I also noticed this a few weeks ago @ Sea World when amongst many people.  Does this ever go away or is this a life long symptom?

As Obita stated, it will subside after surgery but it takes awhile to completely lose the feeling of disequilibrium as your brain has to adjust. 

Does the scar from the incision behind the ear heal properly or will it be very visible post-op?

It will be visible for a few weeks.  My (short) hair covered the scar with a month.  By 6 weeks, it was 'invisible'.  My barber was pleasantly surprised.

As I mentioned in my last post about stress, and I received some good comments regarding stress, fatigue and the exasperation of dizzy and numbness symptoms.  I mentioned that I have a high stress job and how my symptoms are heightened at work.  Does this ever change post-op?  What type of careers do many of you post-op “survivorsâ€? have?

I'm retired so not too much help on the job-related question but others have done quite well going back to work following AN surgery.  One of the cautions is that you shouldn't 'rush it' when returning to work, especially in a high-stress job.  Going back part-time seems to be the best idea for many.  Remember, you'll be recovering from major (brain) surgery, not a tonsillectomy.  It takes time.

I’m sorry if my questions are a bit “repetitiveâ€?.  I was very tired last night when I wrote my post and I never asked the questions specific enough.  This forum is great and it has restored my faith in people.  This has given me such a great amount of peace, comfort, and knowledge.  Thank you!  Even though we never want someone new to join our “clubâ€?, I can’t wait until I can return the favor to someone who is terrified of their new situation.

Adrian

We don't mind 'repetitive' questions.  Every newly diagnosed member has similar questions.  We expect that and are here to answer and reassure as best we can.  No problem.  I'm so glad you're able to take strength from our posts.  That's why many of us remain active here long after our AN has been vanquished.

Jim

[Samantha n Adrian]

Well…..I met w/ my Otolaryngologist this morning regarding my 1st MRI read.  To see my MRI films and the size of the tumor was quite a shock.  Sam and I were very surprised.  We had a list of about 20 questions for him, and in my opinion he scored about a D.  He had too many maybes.  Too many what ifs, too many uncertainties regarding my facial nerves.  He left the office for a minute, Sam and I looked at each other and both just shook our heads NO.  I’m sure he’s great at what he does, but he is by no means an AN pro.  We left and proceeded to call a few doctors, one being Shands in Gainesville, FL.  I gave the nurse my sob story and told her that I would like to mail them a CD of my MRI and have the Dr. call me back for a phone consult.  She told me they did not do that.  She said to fax her a copy of the MRI report, the Dr. would look at it, call me back and we would need to schedule a face-to-face meeting.  I was aggravated because I live about 2.5 hrs away.  I told her fine, that I would and that and wait for their call.  Then I called House in LA and got voice mail.  Extremely aggravated at this point, I left all of my info awaiting their call.  In about 20 mins I did talk to a nurse at House.  I gave her my sob story and very confidently she said “WE ARE THE BEST!â€?  Those are words I wanted to hear.  She told me how typically my op would take 5-6 hrs.  I asked her why my Doc said 12-15 hrs and her response was great.  “That’s because he’s doing the operation and not us!â€?  She told me how they do AN ops every day, after day, after day.  Now that’s what anyone wants to hear…..experience.  I have read that same line paraphrased in many BLOGS.  I hope it’s just not a sales pitch and that it actually is true.  I did feel great about our conversations.  I told her that I live in Orlando, FL and that I don’t know how we would handle logistics.  She told me that they have experience in that and they have systems for everything.  She said that she forwarded my info to Dr. Luxford and he would call me back later tonight.  She said that I can choose either Dr. Hitselberger or Dr. Swartz for my surgery, any suggestions?  Has anyone had Dr. Luxford?

She just put me at ease.  Honestly, I think my mind is made up…..going to LA!  I would love to hear feedback on this from people.

I am mailing a CD of my MRI to House to be received by Monday, and I’m still getting an opinion from the Neurosurgeon partner to my Otolaryngologist and sending my MRI report to Shands and starting that process.  I want the 3 opinions.

I want to add that I appreciate all posts.  I would love to return personal messages, but there is a lot going on right now and I just don’t have time.  Even if I don’t reply, I read all posts and appreciate your input.  I will reply personally as time permits.


Thank you ALL!
Adrian

[Pembo]

Hi Adrian (and Sam). You are on the right track. Many here have gone to House from far away and the results are terrific.

As for post-op claustrophobia...had it before and right after surgery but 3 years later not at all!
Stress definitely heightened my symptoms, after surgery new symptoms but no where as severe.  I no longer have any dizziness. Just facial numbness and paralysis, that is still recovering and everyone around me says that don't even notice and of course the ssd.

When you talk to House, ask about the BAHA for hearing. It is a great little device and I highly recommend it. I know there are others who had the implant at the time of surgery. It doesn't replace your hearing but it definitely helps!!! Just one more thing to add to your list of questions.......

Ask lots of questions and think positive! We're here for you

AND it does feel good to be able to give back to a newbie. Your turn will be here soon enough. It will be a great day when you are a Post-Op An patient and begin your new normal.

Good luck......

[OTO]

Adrian

For the House Clinic, they almost never answer the phone directly, but you leave a message and they call you back.  They do have a central operator, and all the individuals have direct numbers, but it always seems that you need to leave a message.  The clinic is huge, and on the days I was the there it was packed (waiting room with over 20 people).

One thing to consider is they will almost always recommend surgery (that's what my second opinion neurosurgeon said).   They are very experienced in surgery.   The day I had my surgery, I was one of three that day, and the next day they did another two.   Dr. Stefan said they did 240-something AN surgeries in 2006.   My neurosurgeon was Dr. Schwartz.  My neuro-otologist (ear surgeon) was Dr. Slattery.  Look on the Internet for the House Clinic website.  If you browse around it has the curriculm vitae of all the doctors and where they went to school, did their residencies and fellowships, etc.  You can get a feel for their experience and specialities.  Dr. Schwartz looked pretty young to me... mid- to late- 40's (steady hands).   The neurosurgen and neuro-otologist work as a team during the surgery.  I'm not sure who cuts what....  

For the logistics.  House will assign a surgical counselor (an RN) who will help you do the paperwork and answer questions.   I called her at least 4 or 6 times once I had a surgery date with questions.  You'll need to make your own flight arrangements and hotel arrangements.  House will send you a packet with hospital forms, brochures, a list of recommended hotels that give a "House discount" and info about the Seton Guest Center.   Seton is connected to the St. Vincent Hospital.   My father and I stayed there.   The rooms are nice but simple and relatively cheap ($50/day).   I think the price might have gone up a little this month.  We didn't rent a car, so most of the time my Dad just stayed at the Guest Center reading magazines and watching TV.   A rental car might have been helpful, but he is older and didn't want to drive in LA.  We caught the Super Shuttle to and from the airport to the Hospital.  

I arrived in LA on sunday.  On monday, a full day of testing.   Meet with neurosurgeon (Schwartz), neuro-otologist (Slattery) and internal medicine doc (Stefan).   Full physical with internal medicine doc (EKG, Pulmunary Function test).  Then across the street to St. Vincent Hospital for blood sampling and chest x-ray. I did the checkin paperwork at the same time I was waiting for the blood tests and x-ray.   On tuesday, checkin to hospital at 6 am.  Surgery at 7:30 am.   I was in the ICU around 1:00 pm (I think???).