Author Topic: Another new member  (Read 7056 times)

mandy721

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Another new member
« on: June 09, 2009, 12:02:18 pm »
My husband was  diagnosed with a 3.5 mm acoustic neuroma last week.  He has had partial  numbness of his tongue and lip for about 6 years, but it was something he could live with and there never seemed to be a sense of urgency about having it checked out.  Over the years, he mentioned it to our family dentist and internist, but there wasn't any follow up.  My daughter and I urged him to see a neurologist, but he didn't think it was that much of a problem.  He had also noticed a hearing loss, so he finally went for a hearing test and a significant loss was detected in his right ear.  He was then sent to a neurotologist who discovered a middle ear infection that husband wasn't aware of!  He said he never felt any pain.  The neurotologist sent him for a contrast MRI to rule out a mass in the middle ear.  The MRI was done on a Saturday and when Monday came and we didn't hear anything, I breathed a sigh of relief....but the phone rang at 8 pm  with the news that there was a large tumor.

In the past week, we have been gathering information about  doctors  and educating ourselves about this new world we find ourselves in.  The neurotologist feels surgery within the next few months is needed.  We are in NYC and are seeing doctors here to get opinions.  So far we have seen Ian Storpor who works with Dr Sisti.  Next week, we  see Dr. Sisti, Also have appointments with Drs. Roland, Seleskind and Gutin.    I was also thinking of sending his records to the House Clinic for a complimentary consultation.  When I called this morning, I was told I could request a doctor for the consult or without a specified doctor they would assign it to one of the staff.   Any suggestions as to how to approach this consultation  and the whole new world of an would be appreciated.    It is great to have the resource and thanks to all of you who so generously share your experience, wisdom and support. 

Miranda


Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

CHD63

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Re: Another new member
« Reply #1 on: June 09, 2009, 01:11:53 pm »
Miranda .....

Welcome to you and your husband ...... to the world of ANers/ANer Caregivers!   :D  Sorry you found need to join this rather rare group ..... but glad you found this Forum.  You will find many loving, caring, concerned friends here ..... who are very willing to answer any and all questions ..... but most of all we are very empathetic with those walking this AN journey.

There are a number of people active on this Forum with experiences with the doctors and places you mentioned.  I know they will be posting here soon.

As with many of us, upon our diagnoses we began doing our homework ..... as it sounds like you have already begun doing!  The more information you can gather, the better.  I personally searched the Internet, of course, but also emailed all of my medical friends and family for their advice on treatment options and places with the best reputations for successful treatment.  At some point you will need to stop gathering information and make your decision.  Hopefully you will then be able to relax as you await the treatment/surgery date.

Ask away with any additional specific questions and we will do our best!

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

Jim Scott

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Re: Another new member
« Reply #2 on: June 09, 2009, 03:55:44 pm »
Hello, Miranda - and welcome to our little corner of the internet!  :)

I regret your husband's AN diagnosis but you seem to be on the right track with doctor consultations.  Thanks for joining us and best of luck to you and your husband as you begain your 'AN Journey', as we like to call it.  May it be a successful journey for you.  :)

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.

Kaybo

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Re: Another new member
« Reply #3 on: June 09, 2009, 07:17:03 pm »
Is it 3.5 mm or cm? I would think that 3.5 centimeters would be a lot more in line with what you have been told so far...just curious...

K
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!

ppearl214

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Re: Another new member
« Reply #4 on: June 09, 2009, 07:23:12 pm »
Hi Miranda and welcome.

In line with Kaybo's comment... 3.5mm is very very small and am surprised that it would cause these issues your husband is unforutanely experiencing.  Sounds like you are on the right track with your research and please take your time researching here as well. There is a lot of valuable info re: treatment facilities, physicians, treatment options, etc to help you out.

Again, welcome to you and your husband. We are here to help.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

mandy721

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Re: Another new member
« Reply #5 on: June 09, 2009, 08:10:08 pm »
Hello again.  The neurotologist said the mass was 3.5 cm, not mm.  Boy do I wish it were smaller.   I pulled out the radiologist report to make copies and
the mass is described as 3.1 SI x 2.5 AP x 2.3cm TR mass of right cerebellopontine angle region.  I haven't yet figured out what the dimensions represent, but
does this indicate it is smaller than 3.5?   

Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

leapyrtwins

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Re: Another new member
« Reply #6 on: June 09, 2009, 09:02:00 pm »
Miranda -

an AN of 3.5 cm rules out radiation due to it's size, making surgery the preferred treatment option for your husband.

You have the good fortune of living near one of the best groups of doctors I can think of - Drs. Roland and Golfinos in NYC.  I have heard nothing but wonderful things about them and I tell everyone in your area to consult with them.

If you haven't already, please take the time to contact the ANA and ask them to send you their informational literature.  It's full of lots of great information and it's written in plain, simply language - not "medical speak".  I think it will be very helpful to both you and your husband.

Best,

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

Adrienne

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Re: Another new member
« Reply #7 on: June 09, 2009, 09:13:54 pm »
Hi Miranda,

I always have a twang when I read that yet another person has been diagnosed and has joined this 'club'.  It's too bad anyone has to navigate this scary world.  The reading that you will do over the next while will likely scare you to death, but please know that despite everything you read-this doesn't have to turn out to be too bad.  The journey is rough, but the grass can be pretty green and sunny on the other side.

My tumor was 3cm x 3cm and was removed exactly 2 weeks ago today.  By the sounds of it, I'm actually doing just as well as your husband prior to his surgery!  So who knows, hopefully he'll get through this with little 'new' side effects of the tumor too.

Wish I could send you some calming vibes over the next few weeks as you sort through the information.  The board is GREAT for helpful information.  Seems that no matter what the question, someone has gone through it!

(hugs)

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

OTO

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Re: Another new member
« Reply #8 on: June 10, 2009, 07:43:52 pm »
For the House consultation, suggest you request Drs. Brackmann or Friedmen (check older msg strings on House Clinic).  Many people have raved about the supportive nature of these two doctors.   I had my surgery with Drs. Slattery and Schwartz (neurosurgeon) from House.   Dr. Slattery was the lead.    He was confident and straight forward, and I'm very happy with my results.   However the testimonials on Brackmann and Friedman are re-assuring....

mandy721

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Re: Another new member
« Reply #9 on: June 11, 2009, 01:37:36 pm »
This forum is a tremendous resource and both my husband and I are very grateful that we found it.  I have contacted both the  ANA and the local brach and have received information packets.  You are right that the information is very informative and clearly written.  After the consultations next week, I am sure  we will have many questions.  I sent off the records to The House Clinic today for a consultation.  We are eager to learn what the doctors think next week.  My husband is very concerned with  the possibility of losing his hearing.  His concerns change day by day, which I imagine must be quite normal at this stage, but this seems to be the most troubling to him.

Now that he has this diagnosis, he wonders if other issues he is experiencing could be linked to the an.  Today it is pinprick pains at the back of his eye.    This is such a strange place to be, but very comforted to have such a great support group.

Miranda

Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Jim Scott

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Re: Another new member
« Reply #10 on: June 11, 2009, 02:05:51 pm »
Miranda ~

Although a firm AN diagnosis is not welcome for anyone, the certainty of knowing what he has - and that the odds of the tumor being malignant are infinitesimal - has to be a relief, of sorts. 

Your husband's concern over losing hearing in the AN-affected ear is perfectly understandable.  Unfortunately, the vast majority of AN patients do lose all or some hearing - but only in the affected ear, meaning he'll be hearing impaired - but not deaf.  Fortunately, there are some excellent hearing devices available if your husband feels he needs them (and he might).  AN patients outcomes are very individualized and there aren't any guarantees on retaining hearing in the AN-affected ear.  Some surgical approaches cut the nerve (for access to the tumor) and hearing is permanently lost in that ear.  The doctors you consult with will explain these options and risks in detail, I'm sure.   

Blaming the AN for other physical problems is common, as is noticing every twitch and tickle that occurs and assuming it's the AN at fault.  This is not necessarily realistic but quite common.  Your husband seems to be a 'typical' newly diagnosed AN patient.  Because this is a relatively rare tumor in a very troublesome place, his concerns are valid and quite normal.  He'll need your understanding and support for some time and with good choices and answered prayer, he can come through this experience a bit changed, but basically whole and probably with a better outlook on life.  Having patience (sometimes with each other) will be paramount - for both of you - in the days, weeks and months ahead.  Be prepared to nurture your patience and to use it, liberally.  It'll be easier that way.  I wish you success with your doctor consults. and look forward to learning the results - and conclusions reached.

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.

leapyrtwins

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Re: Another new member
« Reply #11 on: June 11, 2009, 08:27:58 pm »
My husband is very concerned with  the possibility of losing his hearing. 

Miranda -

tell your husband that lots of patients who are SSD (single-sided deaf) adjust to the "situation" just fine. 

And for those who don't (like me) there are options.  There is something called a BAHA (bone-anchored hearing aid) which is a hearing aid that attaches to a titanium post that is implanted into the skull and there is something called a TransEar which is more like a conventional hearing aid that is specially molded to fit into the ear.  Some of us on the forum have BAHAs (me, again) and some have TransEars.  They are both very good alternatives. 

I'm glad you got the information packet from the ANA.  I thought you'd like it  ;)

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

mandy721

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Re: Another new member
« Reply #12 on: June 19, 2009, 01:14:59 pm »
I am the original poster, just  changed my user name.   My husband  had a number of  consultations this week.  He saw Drs. Roland, Selesnick, Gutin and Sisiti here in New York and had a phone consultation with Dr. Friedman at the House Clinic.    Four of the five doctors felt  translab was the way to go based on the size of the acoustic neuroma.   Dr. Sisti, the last doctor we saw,  thinks that a retrosigmoid approach is worth a try to save the hearing.  He remarked that the  fact that  my husband has  any hearing in that ear is remarkable and feels that it is a viable approach.    We weren't expecting this, but his thinking  makes a lot of sense  to us and my husband likes the  outside of the box approach to dealing with this tumor.   
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

annac

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Re: Another new member
« Reply #13 on: September 08, 2009, 07:23:46 am »
Hi Mandy,

First of all, I hope your husband is doing well. I just found this forum and found your post about your husband. I'm 55 and have a 2.4cm AN on my right side pressing on my brain stem. I live in NJ and in 2000 had radiation (AN was 1.2cm) I never had any symptions except some hearing loss but now I get a dull pain at the back of my neck that travels down my jawline so I have to make some decisions about surgery.

What made your husband decide to go with Dr. Sisti rather than Dr. Roland?
2000 -Right side 1.2cm AN FRS w/ Dr. Lederman, Staten Island University Hospital
2009 - 2.4AN - some hearing loss, mild right ear pain, mild tinnitus
looking for options

Jim Scott

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Re: Another new member
« Reply #14 on: September 08, 2009, 12:12:31 pm »
Hi, Mandy ~

Your screen name-change is no problem at all, and thanks for the update on your husband's consultations with the various neurosurgeons.  Although retrosigmoid approach surgery does hold out the possibility of retaining some hearing in the affected ear, it is still a long-shot, as some of our members can attest (Jan 'leapyrtwins' comes to mind).  As long as the surgeon feels sure that this surgical approach will allow him the necessary access to the tumor that allows him to remove all of it, it does seem worth a try.  Let us know your husband's final decision.

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.