Author Topic: beginning to wonder about my ENT!!!!  (Read 5869 times)

tenai98

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beginning to wonder about my ENT!!!!
« on: September 01, 2008, 07:20:51 am »
When I asked my ENT about a BAHA, he discouraged me from getting one...As well as he was more for the translab technique...Now I'm reading about this transear which sounds great.  Also I'm concerned about the statement about the way he determined my Booger size...the report says 14mmX11mmX11mm ...he says more like .6cmX1.4cm.....I am seeing my GP soon and will once again insist on someone else reading the MRI.....PRO ACTIVE is the only way to be....
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

mk

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Re: beginning to wonder about my ENT!!!!
« Reply #1 on: September 01, 2008, 09:24:40 am »
You are right that you must be proactive, keep copies of all your MRIs, reports etc.

On the issue of measurement, the inconsistencies often arise from whether you count the portion inside the inner ear canal (IAC) or not. Some doctors do and some don't. Usually it is a very thin thread extending towards the IAC, therefore it does not contribute the volume. I asked the doctors in the Cyberknife forum, and they confirmed that they typically don't consider this when calculating volume for radiosurgery.
So, the largest dimension (counting the portion in the IAC) may be say 11 mm, but the real diameter may be 0.6 mm.

As you know it is not only size that counts, but also position, this is why it is important to get many opinions.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

jazzfunkanne

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Re: beginning to wonder about my ENT!!!!
« Reply #2 on: September 01, 2008, 09:26:53 am »
Hi, I would get your neuro consultant to read the MRI, all the ent doctors i have came arcoss have recommended the BAHA.
over 4.5cm AN removed dec 06

mk

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Re: beginning to wonder about my ENT!!!!
« Reply #3 on: September 01, 2008, 09:29:28 am »
Oh, and I forgot. ENTs are usually pro translab, because this is what they know best from their training. There are many neurourgeons who specialize in one, or all the techniques. The best is to have a team of a neurosurgeon and an ENT on board.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

tenai98

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Re: beginning to wonder about my ENT!!!!
« Reply #4 on: September 01, 2008, 09:40:33 am »
ok here is what the report says....maybe someone can translate it for me...
 The extracanalar or cerebellopontic component measures about 14mm in AP diameter,X 11mm in traverse X 11mm in cephai
locaudal....
I am ever so estatic that I found this site....MUahhhh to all of you for ur understanding and support

Joann
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

tenai98

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Re: beginning to wonder about my ENT!!!!
« Reply #5 on: September 01, 2008, 09:53:52 am »
oh and I forgot to add this....the intracanalar component measures up to 9mm in length
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

leapyrtwins

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Re: beginning to wonder about my ENT!!!!
« Reply #6 on: September 01, 2008, 10:11:53 am »
Joann -

keep in mind that not all ENTs are familiar with acoustic neuromas - shocking, I know, at least to me  ::)  IMO you need to see a neurotologist - basically an ENT with specialized training.  Nothing against ENTs - I really like mine but he knew "squat" about ANs.  Thankfully he referred me to someone who knew all about them.

As far as discouraging you from a BAHA.  I'm fairly certain your ENT doesn't have one - so what is he basing his opinion on?  I have a BAHA and would recommend it to anyone who doesn't mind having the titanium fixture implanted into their skull.

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

yardtick

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Re: beginning to wonder about my ENT!!!!
« Reply #7 on: September 01, 2008, 11:01:07 am »
Joann,

There are several very good neurotologist in Toronto.  I see Dr Rutka at Toronto General.  I also know he performs all of different surgeries.  Sunnybrook Hospital also has some outstanding neurotologist.  If London is closer to you I know London General also has neurotologists.  Dr Parnes comes to mind. 

I agree with Jan "not all ENTs are familiar with acoustic neuromas".  I know this first hand.  You have time, start to look at your options here in Ontario.  Make sure you let your family doctor know you need a 2nd or 3rd opinion.  Do you have a CD of your MRI?  You will need it if you should see another doctor.   

Take care....I know its easier said than done. 

Anne Marie

P.S. Has your son left for Afghanistan yet?   I have a friend who's son is leaving mid month.  My thoughts are with these brave young men.
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

tenai98

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Re: beginning to wonder about my ENT!!!!
« Reply #8 on: September 01, 2008, 11:10:11 am »
Anne-Marie....thx for the info...I will be demanding to see a neurotologist when I see my GP in two weeks.....My son left a week ago today for afganistan...
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

wendysig

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Re: beginning to wonder about my ENT!!!!
« Reply #9 on: September 02, 2008, 02:50:24 am »
Joann,
Glad to hear you'll be seeing a neuortologist.  My ENT told be straight out he didn't so this surgery and sent to me see one.  He (my neurotologist) has been wonderful and I had a good feeling about him immediately.  If you don't have faith in your doctor he is not the one for you!

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

lori67

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Re: beginning to wonder about my ENT!!!!
« Reply #10 on: September 02, 2008, 09:20:37 am »
ok here is what the report says....maybe someone can translate it for me...
 The extracanalar or cerebellopontic component measures about 14mm in AP diameter,X 11mm in traverse X 11mm in cephai
locaudal....
I am ever so estatic that I found this site....MUahhhh to all of you for ur understanding and support

Joann

Joann -

The "extracanalar" part refers to the part that's outside the bony canal.  The intercanalar part is the part that's within the bony canal, that's probably why they only mention the length of it and not the other dimensions.

The "AP" measurement is front to back, "transverse" is side to side (like ear to ear) and "cephalo-caudal" would be the top to bottom measurement.

Your doctor may be taking the part inside the canal into consideration when giving you the actual dimensions, rather than breaking it down like the radiologists report does.
Hope that helps.  Probably not...

And I'd ask why he didn't feel the BAHA was a good idea.  He may have some medical reasons for preferring the TransEar instead, but you should probably get the pros and cons of both before you have to make a decision.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

tenai98

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Re: beginning to wonder about my ENT!!!!
« Reply #11 on: September 02, 2008, 12:07:19 pm »
Lori
When I mentioned the BAHA, he was negative about it in the manner that it needs alot of attention...ointment and so on...I have booked an appt with my GP and I am insisting on an appt with a neurotologist both in Ottawa and Toronto.  I also will be asking for appts with radiologist who specialize in cyberknife...I know its not available (my ENT had no clue about it) in Canada and the closest one to me is in Syrycus (spelling?)NY...about 5hours away...but hey I can do alot of shopping while there...And I will be sending my MRI cd to house in LA for a consultation with them....AS long as the procedure in not available in Ontario, the health plan will cover it or most of the expense...but I have CHAMPVA coverage in the states and they will cover what OHIP doesnt...
Jo
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

lori67

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Re: beginning to wonder about my ENT!!!!
« Reply #12 on: September 02, 2008, 12:23:37 pm »
Well, if you can get some shopping done in there too - then it may be well worth the trip!   :D  I've been to Syracuse - very nice.  Well, except if it's winter then it's very nice with a lot of snow, but being in Canada, I guess that's not an issue for you!

I'm still surprised that your doctor would be negative about the BAHA.  I've never heard anyone say it required any more attention than any other kind of hearing aid.  Yes, I occasionally have to put some ointment on, but really, after having to put on makeup, shave my legs, do my hair, etc.... putting a little ointment on my BAHA site isn't a big deal.  He clearly does not understand what we women go through to look so stunning!   ;D

I think seeing a neurotologist is a good idea, and so is researching all of your treatment options.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

leapyrtwins

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Re: beginning to wonder about my ENT!!!!
« Reply #13 on: September 02, 2008, 02:35:08 pm »
Jo -

as my partner in crime, Lori, said I've also never heard of anyone's BAHA requiring a lot of attention  ???

After my BAHA site healed - about 30 days post op - I never had to apply ointment again and all I do from a daily maintenance perspective is clean my abutment with the Cochlear toothbrush each morning when I shower.  Even if you run into infections, which do happen but aren't common, post op all you'd have to do is apply ointment.

I'd look into both the TransEar and the BAHA - but please don't discount the BAHA prematurely as I've found it utterly amazing.

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

Jim Scott

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Re: beginning to wonder about my ENT!!!!
« Reply #14 on: September 04, 2008, 01:49:57 pm »
Hi, Jo:

As an impartial observer who has SSD but doesn't have any kind of hearing device and doesn't plan to get one, I feel your ENT's bad-mouthing the BAHA stems from a bias based on a lack of factual information  This is sometimes called: ignorance. 

As Jan and Lori have correctly advised, seek other medical opinions. From the real-life accounts I've read on these forums, the BAHA requires minimal maintenance and is very effective.    Don't allow one ubiased ENT physician to keep you from better hearing, if possible.

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.