I think I'm joining your club here

[mojo]

Until a couple of hours ago I'd never heard of ANs, but this board is rapidly educating me.  It is oddly comforting that so many of you have the same hard to describe symptoms that I do.  The dizziness, the mental foggyness, the mental fatigue, handwriting going downhill...

I don't yet have an official diagnosis, and while I'm hoping for the best, I'm preparing for the worst.

I'll try to make this long story short.  In August, 2005 I had surgery on my right ear to take out  infection in my mandible.  I lost 50% of my hearing and the ear continues to feel full.

The ear pain is coming back, so I went to see the ENT.  He referred me to a neuro doc, and then things started getting confusing.  I had an MRI last Friday.  The Neuro he wanted me to see is a surgeon.  After many phone calls, the ENTs secretary called this morning to say that I need to see a garden variety neurologist. 

Since I'm not a doc and don't play one on the internet, I was fine with the change.  Then the surgeon's MA called this afternoon to make an appointment with him.  The MA apparently has a copy of my chart and she said that I probably have an AN.

Needless to say, I looked it up, and I'm not happy right now.  I'm trying to be realistic, but do not relish the idea of surgery.

I'm certain that these questions have been asked and answered many times, but I'm mentally exhausted right now and don't have the energy to read all the posts.  So here goes:

How long is the surgery?
Is the hospital stay generally 4 to 7 days?  If so, does anyone know why it's so long?
Is movement allowed post op while in the hospital?  Walking around, etc.?

I understand the issues with driving and needing help, and I know we all react differently to surgery and anesthesia, but does anyone know why the post op recovery time is so long?  I've been reading 6 weeks, and that seems like a lot.

Thanks for any help you all can give.  This is a great forum.

And, since I tend to think odd thoughts, I wonder what people did back in the days before the surgical option...

[nancyann]

Hi Mojo:  1st off I hope you're NOT joining our club, but, if it turns out you do have an AN, we all welcome you with open arms (it'll help our balance too!!).
Everyone's surgical experience is different, with some similarities.  As for me, 2CM AN, I had the surgery on a Monday & went home Friday.  All balance is lost due to vestibular nerve involvement (most of us), so you have to teach your unaffected side to take over the balance - it felt like walking on a suspended bridge that's rocking back & forth!!
You WILL be walking in the hospital, or should I say, learning to re-walk.   For me, the headaches were horrendous for about 3 weeks (I can't take opiates for pain, get really nauseous).  I unfortunately ended up with right sided facial paralysis, so I can't blink & my mouth droops on that side (don't want to go into the other prblms with it).   You're in the hospital for at least 4 days to monitor for CSF leak, increased intracranial pressure, bleeding....
I started driving 3 weeks post op, went back to work (Part time for 2 weeks, then full time) after 8 weeks.
Let's hope you don't have an AN, & if you do, I hope it's small enough that you can look into other options such as 'watch & wait' or radiation.   Whatever happens, this AN family is here for you.
Always good thoughts,  Nancy

[Jim Scott]

Hi, mojo:

If you do have an acoustic neuroma tumor a lot of the answers to your questions will relate to the size of the AN.  If it's below 3 cm, you may be a candidate for radiation instead of surgery, which most AN patients opt for when feasible.  The MRI scan and the neurosurgeon's diagnosis will determine if radiation is a viable treatment for you. 

However, if surgery is your only option or simply your choice, the surgery can take from five to fifteen hours, depending on a host of factors, including the location of the tumor, it's actual size, the surgeon's skill and thoroughness, and so on.  For reference: I had a 4.5 cm AN tumor and a very careful surgeon.  My surgery took just about nine hours...and he only removed about half of it, as planned (I had radiation later, to kill it off). 

The hospital stay can vary but 4 to 7 days seems to be an accurate estimate.  The first few days you're usually in ICU for monitoring and you sleep a lot as the anesthesia 'wears off'.  I spent 4 days in ICU, about half of a day in a semi-private room and was released after lunch on my 5th day, post-op, when my doctor was convinced that I had no real post-op problems and could navigate reasonably well, which I had to prove to the PT nurse by walking up and down stairs and walking a (relatively) straight line.   I also underwent about 12 bedside neurological tests (administered by nurses) while in ICU.  It gets tiresome but they have to do it to be sure you're functioning well.  Some AN patients have post-op problems ranging from dysfunctional balance to facial paralysis to CSF leaks to infections (a 'free gift' from the hospital), headaches, etc.  I like to characterize having an AN as a 'minefield'.  The tumor is benign (non-cancerous) but its location makes it problematic in many ways.  Choosing an AN-experienced neurosurgeon is critical. 

As you've probably guessed, no AN 'case' is the same.  Some patients have horrendous problems after surgery (or radiation) while other patients do not.  I'm in the latter group and I'm eternally thankful to God for that.  I trust you'll also do well with whatever treatment you choose, should you actually be diagnosed with an acoustic neuroma tumor, which I sincerely hope is not the case.  Please, let us know. 

Jim
   

[satman]

Hi Mojo,if surgery ends up being the route you choose,dont sweat it,theres many other issues to worry about.
As far as time in hospital,heres just a piece of my story.
17 1/2 hr surgery,i did'nt come home for 2 months.
I still dont/cant drive, if you ask my wife.
I have been off work since april and have'nt  been back yet.
I will pray that you dont have to join our family but if you do, our arms are wide open.

[Larry]

Hi Mojo,

Get a firm diagnosis first and then get a second opinion (too many posters have been mis-diagnosed). I think you can send your mri films to Dr Brackman at HEI for a free report.

Once you have the size of the AN (if indeed you have one) then get diffeent opinions from experts about treatment.

There are essentially 3 different types of surgery avialable and two radiation types. You also have watch and wait as an option.

Good luck and hope you don't join our club.

Laz

[Desilu]

Hi Mojo,

As you can see, we all have had AN's but each story is different. I went into the hospital on Tuesday morning, had surgery at noon was out by 4 pm. was in ICU for a day and a half, then switched to a regular room and was released on Friday afternoon. My tumor was small and the doctor said it was easy to remove (some are not!) I had some delayed facial paralysis but it was only temporary. Was back to work in 8 weeks and probably could have gone back sooner, but I enjoyed the time off! Hope you don't have an AN but if you do, we will help you in anyway we can. I wish you the best!  Ann

p.s. Dr. Brackmann at House Ear Clinic will give you a free phone consultation if you send him you MRI films.

[Gennysmom]

Hi Mojo,

Echoing what everyone else is saying...it all depends on size, doctor, stickiness or not, etc.  Don't worry about it until you know what it is you have (easier said than done, I know).  As far as the long recovery, what I can say is that it is brain surgery, that and depending how long you're under anesthesia combine to make a pretty strong case for a longish recovery.  Not to mention that they mess with nerves and nerves don't like to recover too quickly.  I was back to work in two months but I still consider myself "in recovery" at this stage...things are still changing.  Not bad, per se, just "different". 

Good luck, hopefully you won't have to join our group!  Let us know though!

[Samantha n Adrian]

Hi Mojo,

I hope we don’t have to welcome you to the club, but as you already see, this is THE best place to be.  Reading your post makes me very worried about your surgeons.  They sound a little “wishy-washyâ€? to me.  Where are you geographically, and how old are you.

I just had surgery 4.5 weeks ago @ Tampa General Hospital in FL with Dr. Bartels and Dr. van Loveren as the Neurosurgeon.  I had a 4 cm tumor which was severely compressing my brain stem and pushed up against my cerebellum.  Surgery was supposed to take 6-8 hours, but took 15.  My tumor was extremely vascular and the part against my cerebellum was very tricky to peel away as the tumor was also very “stickyâ€?.  I am happy to note that I returned to work last Monday, 3.5 weeks after surgery.  I was driving at 2.5 weeks.  I am way ahead of the recovery schedule and you will hear every possible scenario on this forum.  One of the things I learned is that NO 2 AN’s are the same and no 2 surgeries will be the same.  Also…..RESEARCH YOU SURGEONS!!!  I did 1 month of solid research and landed on mine who have only been used by one other member on this forum.  My surgeons, incidentally, have performed several hundred of these surgeries and both of them are the heads of their departments.  I knew from day 1 that they were the absolute right team and I know that after surgery as well.  The surgeons did leave some tumor on my facial nerve so I can regain my facial functions.  As of now, the right side of my face is paralyzed, but should come back within a year.  I lost the nerve to my right ear, but it is a small price to pay to have my life back.  Actually....a new life that I'm so grateful for each and every day!

Please give us more info so we can help you.  I found this forum on July 10th of this year, 1 day after my diagnosis, thanks to my lady, Sam who is the strongest woman I know.  The support POURED in immediately and continues today.

If you have any specific questions, feel free to personal message me or just list them in your thread.  I am leaving for Arizona Thursday morning and I don’t know how much computer access I will have when I’m out there, but I will answer as soon as I can.


Adrian

[mojo]

Wow!

I'm already overwhelmed!

More tomorrow when the brain isn't so fatigued.  Adrian, you need to know that you discovered this forum on MY BIRTHDAY!  That's a good omen, eh?

Regards to all of you

[Obita]

Hi mojo and welcome!!

Boy, if I am confused by the "we THINK you have an AN" thing, I can't imagine how you are feeling right now.  Did they give you a contrast injection half way through your MRI?  If they did, the contrast dye will make an AN glow like the moon on a dark night.  There would be no question about it. If you did not have the contrast, maybe the radiologist thinks he/she sees and AN.  If that is so, they will send you off for another MRI with contrast.  It is the only way to see how big or small it really is.

Good luck to you.  Try not to stress about the post surgical stuff until you really need to know about it.  For the record, my surgery was 8.5 hours, I was in ICU overnight and I was out of the hospital two days later. 

Kathy

[lori78]

Hi Mojo,
Gosh, it must seem like your world is crashing in a little. Or a whole lot! I know the feeling and don't want to overwhelm you.  I just had my 6 month post op MRI today, fingers crossed!
I'll be brief, or try.  I had two surgeries (30 hrs total) and radiation (Gamme Knife).  MY hosp stays were pretty short, as I am pretty young and my body mended pretty fast, but I had a hell of a time with the anesthesia, it made me psychotic for a long time.  It was verry scary.
The bright side is that it's over, I'm better and while one year ago it seemed like the world was indeed crashing down on me, it's over, I'm better, stronger, and it's not fatal.  You do have to get used to the 'new you'... which can be hard depending on your side effects.
As you can see, this is a good bunch and we all care because it IS a nasty time, and finding others in our shoes is pretty important.  Feelings of isolation and depression accompanied my mental brain drain. As did headaches, vertigo, and hearing issues.  But I'm back in grad school and my energy has imrpoved.  Modern medicine and advances in technology really have come a long way.
I'm sorr y you are going through this.  I am still relearning to write, my surg and radiation were in Jan/March.  There is light at the end of the tunnel.  Feel secure in the neuro you pick if need be, and know that the location of the tumor causes a myriad of possible side effecs.  My brain stem was nearly in the shape of a "C" but I came out blinking, etc.  It's a tricky little monster.  Holler if you need anything, and if you are indeed a club member, we'll try to help!!

[mojo]

Morning, all.

Again, I want to thank you all for sharing your experiences.  A lot of the comments on symptoms have made me rethink the last couple of years.  Since I'm not the only one who has experienced the mental confusion and physical and mental fatigue, not to mention an overall 'blah' look at life and chores, perhaps I'm not clinically depressed at all.

I'm going to try to answer the questions raised.

I did have a contrast MRI, and from my reading here and at other sites, it will take about 20 seconds to get a firm dx.  Someone said that an AN glows like the moon at night, so that should make the docs' job easier, right?

Regarding the doctors -- My ENT is quite well respected here in Cincinnati.  In 2005, I started with ear pain in January, and saw many ENTs.  Dr. Pensak was the only one who was willing to tackle the problem.  The first MRI I had in 2005 indicated some odd form of brain cancer, so I had a deep biopsy done and it turned out to be infection of the mandible. 

The neurosurgeon will most likely be Philip Theodosopoulos.  He and Dr. Pensak work closely together, so I feel that I will be in good hands.  Both are in Cincinnati and have good CVs.

I'm trying not to obsess about this and see this time as a learning experience.  If I can go in expecting an AN dx, I hope I'll be more clear headed when it comes to asking questions and retaining the answers.

I know that my dx is just a guess, but I have too many symptoms to completely discount the possibility.  However, the hurry up and wait stuff is making me feel like I'm in the Army. 

[HeadCase2]

Good morning mojo,
  Hopefully you won't be joining our "club".  But if you do, welcome.   One thing you may want to do is get a copy of your MRI.  It will be on a CD.  Mine came with its own viewer software, so I can look at the images on a PC.  If your get two copies of the MRI, you can keep one for yourself, and use the other to send to other doctors you may wish to consult with.  If you do have AN, keep an open mind on treatment.  By that I mean check with a few experienced Skull Base surgery teams, and with GammaKnife (GK) and CyberKnife (CK) teams.  ANs are almost always slow growing, so take your time in assessing treatment options and also consider the "watch and wait" option.  Long term you'll be glad you took your time and considered all options.
  Hearing that you may have AN can be scary.  Know that most people do very well.  There have been legions of folks who have been treated and have moved on with their lives.  Many of these folks no longer hang out on support forums after they feel fully recovered.  Try to keep that in mind as you read forum experiences.
Regards,
  Rob

[Gennysmom]

Good morning mojo, good plan if you're of that kind of personality, I was, so the doctor and I could quickly pass the "I've got something bad to tell you phase" and move on to the "what are we going to do about it phase".  And mine lit up like a big wad of chewing gum, so yes, unless it's small and harder to see, it's pretty apparent if it's there.  Good luck!

[satman]

hi mojo,keep in mind that although it will light up in the MRI,it can be misread.
my neighbor brought over her MRI and you could see a big abnormality[5 cm] over her right ear. I would have bet that it was
AN,turns out it might have been a seizure or a stroke.she also had vision problems,she woke up with a crooked smile,and had a
balance issue. My point is get a good DR.
you mentioned your mandible,have you looked into TMJ and stuff like that ?