Author Topic: Joining the pool party  (Read 6566 times)

convivialjen

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Joining the pool party
« on: September 22, 2010, 09:40:52 pm »

   Well  hello AN forum folks,

    I'm glad to find this forum, I've never met anyone else with a AN and was floudering around for awhile.  I guess awhile is a reach because I just found out last friday. 

   I had sudden right sided hearing loss during a horrible URI in 2003. I've always had problems with ear infections and fluid in my ears and have had tinnitis off and on since I was a child. Nothing about the event really startled me, well within usual. I visited my PCP for stronger decongestants then steroids for a month, they sent me to a local ENT clinic for "fluid" in my ear. I should have run when he kept sniffing my hair and telling me how nice it smelled. Yes that really happened. As is I just figured he was a harmless old guy, seemed clinically competent. He wanted to rule out a AN and sent me to have a MRI with flares...no contrast. When I called later he said the MRI was negative, he decided the hearing loss  30% was due to a virus from the URI.   Years go by and the hearing slowly decreases, last 6 months I'm having directional issues. I self referred to the University of Michigan ENT clinic. My hearing test find 90% loss, was shocked beyind belief. I knew it was worse but had no idea it was that low, just amazing how well the brain adapts. The ENT Doc decides to repeat the MRI because he felt the old mri without contrast would not have shown the tumor even if I did have one to show him. The mri center destroyed the originals in 2010, 7 yrs after the scan and the ent's office can't find the copies that should have been scanned during digital conversion. The radiologists report is awol too...hhmm...(yeah, I do sound bitter, I'm not normally but am still reeling)..the MRI with contrast showed a 1.2cm AN, they pointed out to me where it's pressing on the pons. The neurotologist Dr El-Kashlan came in just a few minutes later to meet with me, I believe he trained under Dr. Telian.  My first official appointment is with him next friday.

    From the info I've found on here I'm leaning towards surgery. In retrospect there have been quit a bit of odd little symptoms I've chalked up to sinus issues/ migraines and dry eyes. I even had an episode of right eye and mouth droop that lasted about 20 seconds. I had myself convinced I'd become a raving hypocondriac.
 I've spent the last few days reading thru the posts and making lists of things I need to do, I have no idea why but making lists has always made me calmer, even if I never DO what's on the list it just makes me feel like I'm taking control.  well...thanks to all who have provided so much info, it's calmed me down a lot... :D

                                      Jen


Sudden right side hearing loss  (30%)and tinnitus 2003
wrong type MRI ordered in 2003-no tumor seen
new doc 2010, MRI with contrast ordered due to now 90% hearing loss. 12mm AN found 09/17/2010

CHD63

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Re: Joining the pool party
« Reply #1 on: September 23, 2010, 07:14:58 am »
Hi Jen and welcome to the pool party .....   :D

At 1.2cms, you normally would have all options.  However, given your symptoms you probably need to get the treatment ball rolling fairly soon.  Since you have been reading the posts on here, I'm sure you have seen many of us stress the importance of choosing the most experienced (specifically in the treatment of ANs) physician you can.  It also is always good to have second, third, etc. opinions.  There are several places in the U.S. where you can send your MRI CD for a free evaluation (House in LA, Stanford, etc.), with no obligation.  You might want to do that.

If you have not already done so, you need to send for the free ANA materials.  They are easy to read and very reassuring.

Best wishes and let us know how you are doing.

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

Denise S

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Re: Joining the pool party
« Reply #2 on: September 23, 2010, 08:34:26 am »
HI and welcome to what I presume is a fellow Michiganander.   There are many here that have used the Michigan Ear Institute (Dr. Kartush is the BEST & most recommended in Michigan), and many use U of M too.   I too might recommend scheduling a 2nd opinion.    If you have 90% hearing loss and surgery is an option, you would probably end up with translab surgery.   I had a bit smaller tumor and good hearing, so went for the Middle Fossa approach (ended up losing my hearing anyways....bummer).
 I will only give "my" opinion though after being on this site for a year.    Seems like the 3rd surgical option of Retrosigmoid causes most headache side effects.   

Even going to the MEI (Michigan Ear Institute) website, you can find more information.

I'm from Ludington...where are you from?
BEST WISHES
PM me if you have any questions
Denise

W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Kaybo

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Re: Joining the pool party
« Reply #3 on: September 23, 2010, 09:05:03 am »
Hi Jen!
Sorry you are here but if you have an AN, it is the BEST place to be!  I had all the symptoms in the book but no one ever put them all together - that & it was a LONG time ago when AN's were less common and Dr.'s didn't know as much about them AND I was young, dumb, blond and naive!!   :D 

Ask any question - we are here to help!  Also, if you would like to talk to someone who has "been there," PM me (on left) your number & I'd be happy to chat with you!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

convivialjen

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Re: Joining the pool party
« Reply #4 on: September 23, 2010, 09:08:18 am »
  Thank you Denise and Clarise for your words of support... ;D

     For me going out of state is not financially possible so in a way it's a easier decision for me.  I have no real hearing to spare in that ear, so I want the safest approach. The idea on not having to retract the brain, and shorter period under anesthesia is a real bonus to me. Perhaps if I was hoping to spare hearing someone with many many more surgeries would be safer. Of course there's the facial paralysis issue, I'm very clear that's experienced based also. I guess for me being close to home is very important, heck even traveling has it's risks of DVT, crashes, faa security clearance.  ..etc..
  Has anyone on here known a Paramedic or Fire Fighter, perhaps Cop to go back to work with SSD after AN? I'm pretty worried about balance issues, I'e been dealing with the deafness, it's clearly not optimal but not impossible so far. Since it'll worsen I guess I'll need to improve my coping techniques. I've somedays just put a cotton ball in the bad ear, it doesn't do anything except as a visual clue to people perhaps aiming for that ear is a bad idea. Kind of like wearing an aluminium foil hat.."keep away"!!
    .I'm really hoping that I might be able to get the BAHA post put in at the time of surgery...saves taking time off and while the ent wants me to try a CROS, I can guarantee I won't tolerate it though. Nothing like trying to pop out a hearing aid with booger covered gloves every time I need to listen to lung sounds...

Claricse I'm in Hamburg, that's a tiny tiny village north of Ann Arbor.  I've visited ludington, the west side is sure gorgeous....

                              Jen
Sudden right side hearing loss  (30%)and tinnitus 2003
wrong type MRI ordered in 2003-no tumor seen
new doc 2010, MRI with contrast ordered due to now 90% hearing loss. 12mm AN found 09/17/2010

Denise S

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Re: Joining the pool party
« Reply #5 on: September 23, 2010, 09:44:28 am »
Well Jen I have to say "good job"  I can tell you have done your home work!!!  So many people come to this site and don't know much at all.   

If you are able to get the BAHA covered and done during your surgery, that would be AWESOME!!!   I am 100% with you on the travel stuff.   We have some of the top AN surgeons right here in Michigan, and you are so close to them......that is lucky for you (and much less expense...hense travel & accomadations).

Keep us informed what you find out and when your surgery is.   

You are right.....the west side of Michigan here in Ludington is beautiful!  (ps....this is Denise)   ;D

Take care  fellow Michigander,
Denise
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

convivialjen

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Re: Joining the pool party
« Reply #6 on: September 23, 2010, 09:58:15 am »


  OOps, I was ready to move Clarise in with you Denise, I blame "clive"....:)
Sudden right side hearing loss  (30%)and tinnitus 2003
wrong type MRI ordered in 2003-no tumor seen
new doc 2010, MRI with contrast ordered due to now 90% hearing loss. 12mm AN found 09/17/2010

leapyrtwins

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Re: Joining the pool party
« Reply #7 on: September 23, 2010, 10:01:21 am »
Jen -

although we've already PM'd a few times, I wanted to officially welcome you to the Forum.  This are some stellar docs in Michigan so don't stress about not going out of state.  I stayed right here in Illinois and had a wonderful outcome.

I know a former cop who had AN surgery and a BAHA, but was still given a desk job and then forced to take early retirement.  Seems his hearing wasn't good enough to perform his job - in the opinion of the city he worked for.  He could have fought it, but being so close to retirement anyway, he chose not to.

Some docs combine BAHA surgery and AN surgery and some don't.  It's a doctor preference kind of thing.  My doc is one who doesn't, but that's just his choice. 

Thankfully BAHA surgery (simple, outpatient) is absolutely nothing like AN surgery (major, inpatient) - so if your doc doesn't combine them don't worry about it.

If you get a hassle from your insurance company on BAHA coverage, visit the Cochlear website (www.cochlearamericas.com) and check out their OMS division.  They will work with your insurance company for coverage - as long as you choose a Cochlear implant and processor.

Good luck,

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

Kaybo

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Re: Joining the pool party
« Reply #8 on: September 23, 2010, 10:16:05 am »
Jen~
There is one thing that I want to clarify...while I TOTALLY agree that you want as much experience as possible and that experience COULD cut down on the chance of facial paralysis, there is just NO guarantee.  Even at HEI (which is supposed to be the "premier" AN place), they still have patients that come out with paralysis.  As we say here over and over...EVERY case & recovery is unique!  Let's just hope & pray that you do not have any facial issues!  ;)

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Cheryl R

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Re: Joining the pool party
« Reply #9 on: September 23, 2010, 10:33:34 am »
Jen, I agree Kaybo and also that tumor location and what damage it has already done to the facial nerve  plays a part in any facial issues.  Many of the facial issues are temporary but still not fun when one finds out they have it.         
                                                     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

convivialjen

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Re: Joining the pool party
« Reply #10 on: September 23, 2010, 10:46:34 am »


  Yeah I'm worried about the facial nerve, obviously there must be some pressure or I'd not have the faint issues I do have. I guess even in worse case scenerio I'll soldier on. I doubt working as a medic would be terribly practical but as my right knee is in rough shape I was on the way out within the next 4 or 5 yrs anyways. I think it's the unknown that's bothering me the most, if I knew for sure my career was over I could shift time and energy to career planning.  Right now am making lists lists lists...:)  I unfortunately found a video of a translab online...perhaps shouldn't have watched that...

   I did send away for the AN info, it's set up as reading material for my dear hubby...I stole his crossword puzzles, he needs to study in the loo!  I've not been able to really get him to ask any questions or do much research otherwise, he's been very very withdrawn over the whole subject. 

                                             Jen
Sudden right side hearing loss  (30%)and tinnitus 2003
wrong type MRI ordered in 2003-no tumor seen
new doc 2010, MRI with contrast ordered due to now 90% hearing loss. 12mm AN found 09/17/2010

Jim Scott

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Re: Joining the pool party
« Reply #11 on: September 23, 2010, 01:33:57 pm »
Hi, Jen ~

Although I'm sorry you were diagnosed with an acoustic neuroma, I'm always pleased to find a 'convivial' person joining our forums, even if you probably would rather not have a reason to be here.  That stated, I really have little to add to the previous posts.  You seem to have the situation well in hand and besides, you have lists;)

I'll venture to state that resuming your career will mostly depend on the outcome of your treatment.  However, even with an optimal outcome (no complications) the unilateral hearing loss and overall stress of coping can make a physical job much harder so a career change should not be ruled out.  Something to think about - later.  For now, you have AN research and doctor consults to deal with, and those are enough.  We're here to offer what information we can along with practical advice and, most of all, our full support for you in ther days and weeks ahead.

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.

Lizard

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Re: Joining the pool party
« Reply #12 on: September 24, 2010, 11:38:25 am »
Jen,
I also wanted to welcome you to the forum, sorry we had to meet here, but you are in the best place with the most open and honest people who understand like no one else.
Please feel free to contact me if you want to talk, about anything....
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

CHD63

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Re: Joining the pool party
« Reply #13 on: September 27, 2010, 03:31:36 pm »
Back after a short vacation in North Carolina.  Jen, I wouldn't mind moving to Michigan .....   ;D  We took the ferry from Ludington to Manitowoc years ago and I agree, the area is beautiful.

BTW, I only mentioned the free evaluations for other opinions ..... I was not suggesting you cannot get good treatment in your home state.

Let us know what you decided and how you are doing.

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