Author Topic: Confused Newbie from NY  (Read 9418 times)

Jimbo

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Confused Newbie from NY
« on: June 08, 2008, 03:21:39 pm »
I am a 66 year old NY newbie, diagnosed in April with a relatively small 7 mm x 12 mm AN; symptoms include approx. 25% hearing loss in right ear and 15% Balance loss on right side. I have been told to expect an average growth rate of 2-3 mm/year; however my gut feeling is that the tumor may be growing more rapidly; all symptoms have occurred within the past 6 months, and I experience a “full� feeling in my right ear. My primary goal is to retain hearing in the AN ear, minimize any side effects, if possible, and return to normal activities. I am otherwise in excellent health, play golf and tennis regularly, etc.

I have had consultations with two teams of surgeons; Drs Stieg and Selesnick at Weill-Cornell, and Drs Jafar & Kohan at NYU. Both groups recommend retrosigmoid microsurgery as the best long-term option in my case. They estimated 99% success rates with surgery, with 3-12 week recovery time, but said I would likely always retain the feeling that I had surgery on that side. Dr Jafar also oversees radiosurgery at NYU, but considers microsurgery a better long-term option, as the tumor may resume growth following radiation.

I also spoke with Dr Panullo at Weill-Cornell regarding Gamma Knife radiosurgery. She considers my small tumor to be readily neutralized by G-K radiosurgery, with approx. 99% success rate, and an 80% chance of hearing retention, and referred me to Dr Isaacson at Columbia Univ Hospital, who has the proper equipment for my size/shape of tumor. I consider radiosurgery to be an attractive option, provided it is effective. The surgical teams both stated that radiosurgery is not the best long-term option, as I am otherwise in excellent health, and thus a good candidate for microsurgery at this time, which would decrease with age. They estimated at least a 50% chance of hearing retention in the right ear after surgery. They also expressed concern regarding the difficulty of performing surgery after radiation due to the presence of scar tissue. I understand that the radiation option is not repeatable, because of the high dose rate applied. 

I am not really afraid of surgery, but find radiosurgery to be a very attractive non-invasive option, with virtually no recovery time, provided it is as effective as stated.

My questions are as follows:
1. Is radiation as safe and effective in tumor growth control as stated by the radiosurgeons? What, if any, tumor growth, hearing loss, balance loss, other side effects may be anticipated? Are there any significant long-term effects from the radiation?

2. Is surgery as safe as stated by the surgeons? What complications can be anticipated?

I hope to schedule one of these procedures within the next 2 months.
Thanks for any information you may provide.
7 x 12 mm AN diagnosed April 2008.
Leksell GK performed at Columbia-Presb July 2008

leapyrtwins

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Re: Confused Newbie from NY
« Reply #1 on: June 08, 2008, 05:39:57 pm »
Hi,  Jimbo -

Welcome to the forum  :D

I'm  46 1/2 and from I'm from Illinois.  I had my AN removed via the retrosigmoid approach a year and a week ago.  I had the option of radiation or surgery, but decided to go with surgery for many reasons I'm not going to go into right now. 

My AN was 1.5 cm when I was diagnosed in 4/07 and when I had surgery in 5/07 it had grown to a little more than 2.5 cm.  So, as you can see, my growth was quite rapid.  Rapid growth is unusual and when it does occur, no one knows why it does.  So your gut feeling of rapid growth, while not highly likely, is certainly possible. 

The symptoms I experienced were fullness and diminished hearing in my AN ear.  I also discovered at my first appt. with the neurotologist that I had balance issues that I wasn't aware of.

If you haven't yet done so, I would highly recommend contacting the ANA and asking them to send you some informational literature.  They have some excellent brochures, and although your doctors probably explained a lot of things to you, the brochures are written in very basic (non-medical) language.  I found them extremely helpful.

I'm sure your doctors have given you an idea of all the possible risks and side-effects of surgery and radiation, along with the statistics that go with each one.  However, it is a fairly general rule, that regardless of type of treatment, size of AN, location of AN, etc., no two AN patients are alike.  In fact, no two AN journeys or recoveries are exactly alike either.  As we like to point out on this forum, everyone is different.

The best way to reach a treatment decision is to research all your options and go with what you feel is the best choice for you.  Treatment decisions are very personal choices. 

You ask if surgery is "safe" - IMO for someone your age in good health, it definitely is.  But that is just my personal opinion - I am not a doctor.

I can tell you that my surgery turned out very well.  My only permanent side effect is SSD (single-sided deafness) which I have chosen to minimize with the help of a BAHA implant.  Post op I had a few minor issues - dry eye, dry mouth, balance issues, very temporary facial nerve damage - but my issues all went away within the first 6 months.  I have had no headaches associated with my AN or my AN surgery.

Others on this forum have had different results with surgery and I will let them tell you about their own experiences.  In addition, lots of people here have had radiation and I'm sure they will be responding to your post.

If you want to know more about what led me to choose surgery, or if you have any other questions, please feel free to ask me.  I'm definitely not shy  ;D

Good luck with your research - and your ultimate treatment,

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

jerseygirl

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Re: Confused Newbie from NY
« Reply #2 on: June 08, 2008, 06:21:53 pm »
Hi,

I visited Dr. Isaacson and he is wonderful at explaining pros and cons of Gamma Knife. Columbia ( where Dr. Isaacson works) is the oldest GK installation in NY and when I visited him over a year ago, he said he would have 10 year data soon. We would all appreciated it if you post any info about GK, especially long-term data. Dr. Isaacson works with Dr. Sisti who is a neurosurgeon. Dr. Sisti actually told me that you can do GK again (!); his criteria is two years without growth as documented by MRI, otherwise he does surgery. In addition, he told me that, contrary to popular opnion, it is NOT more difficult to operate after GK. There is a lot of dispute on the issue. Maybe, if you do the surgery so soon after radiation, it is not more difficult because there is no or little scar tissue. However, I have been "blessed" with a regrowth after surgery done 20 years ago and I can tell you that my scar tissue turned off a lot of surgeons, so it is an issue to many after all.

I have never visisted other doctors you mentioned so I cannot help you there. Best of luck in your search.

             Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

sgerrard

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Re: Confused Newbie from NY
« Reply #3 on: June 08, 2008, 06:28:04 pm »
Hi Jimbo,

As a radiation patient, I will give you my radiation view. See Jan's post above for a surgery view. :)

The general stats on radiation would say that radiation has the same effectiveness as surgery in controlling growth. At Stanford, where I had CK, their control rate was slightly below 1% at last report (6 regrowths out of 700 ANs treated). The issue of treating regrowth applies equally to both treatments; in either case, treating regrowth can be more difficult, when there is scarring from the first treatment.

There is no significant long term effect so far, and there are patients treated 20 years ago or more. The main drawback is that the effect of radiation is not immediate; many experience swelling and related issues for 6 to 18 months after treatment; sometimes longer. Generally speaking the rate of hearing preservation is higher with radiation.

I had the same feeling about the tumor being on the move, and that if I was going to preserve hearing, I needed to act, not wait. So far that has worked out well; I have most of the hearing I had at the time of treatment, and with a hearing aid, it is quite useful.

Don't feel rushed to sort this out; it is worth taking some time to look into both treatments, and read up on outcomes from various people. Once you have a sense of what is what, you will be able to make the right choice for you.

Welcome and best wishes,

Steve
« Last Edit: June 09, 2008, 08:23:46 pm by sgerrard »
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jimbo

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Re: Confused Newbie from NY
« Reply #4 on: June 09, 2008, 04:01:07 am »
Hi,
Thanks to all of you for the great information and support.

Eve - Thanks for the info; I will be sure to ask Dr. Isaacson if he has the expected 10 year GK data, and post whatever info received.
 
Jimbo
7 x 12 mm AN diagnosed April 2008.
Leksell GK performed at Columbia-Presb July 2008

Debbi

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Re: Confused Newbie from NY
« Reply #5 on: June 09, 2008, 08:19:24 am »
HI Jimbo-

Just saw your post.  I opted for surgery as everyone I consulted said it was a better option considering the position of my tumor and my age (52).  You may want to see Dr. Golfinos at NYU - he is an Assoc. Professor in their Neurosurgery Dept, and he is the Director of the Gamma Knife.  I talked with him about both options and found him to be very good at explaining things.  He works with Dr. Roland, and they are the surgeons I finally picked to do my surgery.  If you want additional information on my surgery/recovery, you can see the thread "Debbi Bifulco's Surgery" or check my blog (in signature line below.) 

BTW, I have heard fabulous things about Isaacson, Steig and Selesnick - no matter what decisoin you make, it sounds like you will be in excellent hands!

I think what everyone here will tell you is that it is important that 1) you personally feel comfortable with the approach, and 2) that you have complete confidence in your surgical/treatment team. 

Those of us who live near major metro areas, like NYC, are truly fortunate in that we have several highly qualified teams to chose from.

If you want to talk via phone, send me a PM and I'll give you my phone number.

Meanwhile, best of luck - don't let this scare you too much!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Jim Scott

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Re: Confused Newbie from NY
« Reply #6 on: June 09, 2008, 03:51:42 pm »
Hi, Jimbo:

I'm sorry you've been diagnosed with an Acoustic Neuroma but welcome to the forum.  I hope we can be of some help to you.  Although previous posts have touched on the salient points of your query, I may have information you can use to help you make a decision on treatment. 

I'm a fellow sexagenarian and, like you, was in excellent health when I received my diagnosis back in 2006.  Unfortunately, my AN was too large to treat with radiation.  Surgery was the only option.  However, once the large tumor had been 'debulked' (cut down - it's blood supply cut off) I received FSR (Fractionated Stereotactic Radiotherapy) which seems to have halted tumor growth and started to show tumor necrosis (cell death) - which was the objective.  FSR is simply low-dose radiation very specifically targeted to hit the tumor but avoid crucial facial nerves.  It is administered over days (26 days in my case) instead of all at once to give the brain cells time to 'rest' between treatments.  It is painless and each session lasted about 25 minutes.  I suffered no ill effects from the treatment.

As my 'signature' (bottom of post) shows, I'm doing well. 

Like you, upon diagnosis I wanted to have the most efficacious treatment and suffer no complications.  Frankly, every AN patient, pre-treatment, wants that.  I soon realized that while that is a normal desire, its a tad unrealistic.  Fortunately, I had a very good outcome to both treatments (surgery and radiation); no facial paralysis or other complications but I had already lost hearing in the AN-affected ear and it didn't - and will not- return, even though I underwent the 'retrosigmoid (surgical) approach' that normally is used to help retain hearing.  I have a few, quite minor 'reminders' of the surgery but nothing that is visible or that affects my lifestyle in any substantive way.  That is the good news and I'm happy to share it with you, Jimbo.

The less optimistic aspect of my experience that I feel I should share is that, because of the location of the tumor and the difficulty of extracting, or eradicating it, expecting to undergo surgery or even non-invasive radiation without experiencing any real post-treatment issues is not totally realistic.  This isn't like having a gall bladder removed.  There are always a few complications, albeit small (in my case).  However, with carefully selected, highly experienced surgeons and/or radiation oncologists and other medical experts on your team, you should do well.  I did....and I'm not the only one posting here who has. 

The 'bottom line' is to know your options, of course, and what risks are involved.  Choose your doctors with great care, ask whatever you need to know and don't make any hasty choices as to procedure or physician(s).  Some AN patients have not followed that kind of advice - and regretted it.  To be ethical, no doctor can guarantee the outcome of any AN procedure - surgery or radiation - and none will.  This is delicate surgery and just as delicate for the radiation oncologist.  My neurosurgeon and my radiation oncologist spent 4 hours 'mapping' my FSR to ensure no critical facial nerves would be hit, I wouldn't become ill from the radiation and yet it would prove effective.  They apparently succeeded.  I trust you'll experience a similar outcome to whatever method of treatment you choose to address your AN. 

I also hope this information I've offered will be of some value in helping you make a 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.

marymomof3

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Re: Confused Newbie from NY
« Reply #7 on: June 13, 2008, 08:05:30 pm »
Hi Jimbo - Sad that you were diagnosed with AN, but I'm happy that you have come across this website.  I find it to be an incredible support throughout my AN journey.

I was diagnosed with a 1.8cm AN mid-January of this year and had it surgically removed on March 19th.  I too, live in New York and went with the same surgical team as Debbi did above.  I'm 36, and all the doctors I met with receommended surgery over radiation, so I don't have too much insight there.  In addition to the team at Weill Cornell, I also met with Dr Post. 

This is a great forum to get yourself educated on all treatment options.  Feel free to contact me if you want to share notes.

Mary
Diagnosed Jan 21, 2008 w/1.8CM AN on left side.  Had is removed on March 19th at NYU.  And I am super grateful for such wonderful doctors!!

Tumbleweed

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Re: Confused Newbie from NY
« Reply #8 on: June 13, 2008, 09:53:58 pm »
...Dr Jafar also oversees radiosurgery at NYU, but considers microsurgery a better long-term option, as the tumor may resume growth following radiation.

...The surgical teams both stated that radiosurgery is not the best long-term option, as I am otherwise in excellent health, and thus a good candidate for microsurgery at this time, which would decrease with age. They estimated at least a 50% chance of hearing retention in the right ear after surgery. They also expressed concern regarding the difficulty of performing surgery after radiation due to the presence of scar tissue. I understand that the radiation option is not repeatable, because of the high dose rate applied. 

...My questions are as follows:
1. Is radiation as safe and effective in tumor growth control as stated by the radiosurgeons? What, if any, tumor growth, hearing loss, balance loss, other side effects may be anticipated? Are there any significant long-term effects from the radiation?

2. Is surgery as safe as stated by the surgeons? What complications can be anticipated?

Hi, Jimbo:

Welcome to the club nobody wants to belong to.  :)

My experience with a lot of neurosurgeons (I consulted several) is that they don't know enough about the current state-of-the-art radiosurgery and radiotherapy options to offer valid opinons about them. One neurosurgeon I consulted with actually told me after our 1.5-hour consultation that *I* knew more about radiation treatment (from my research online) than he did! I heard many false comments from neurosurgeons about radiation treatment. If you want valid information about radiation options, talk with the doctors who perform it. You wouldn't ask a seamstress how to repair your car, or a chef about whether an artistic painting was executed professionally. Likewise, it makes little sense to take neurosurgeons' opinions about radiation treatment at face value, because they don't do that kind of treatment! Ask the people who have done it and what their results were.

Here is a link to a post I recently made comparing surgery with various radiation treatments (it's the sixth post on the page):
http://anausa.org/forum/index.php?topic=6670.0

Research shows there is no statistically significant difference in tumor recurrence rates with surgery or CyberKnife (CK) or GammaKnife (GK). Doctors who cite higher recurrence rates with CK and GK (compared with that for surgery) have formed their opinions based on outdated studies and have not reviewed the latest data. Improved computer-aided imaging and treatment planning have greatly improved results of radiation treatments in the past decade.

The best neurosurgeons have been cited saying that concerns over surgical resection becoming more difficult after radiation treatment come from relatively inexperienced neurosurgeons (their words, not mine). A great neurosurgeon can handle scar tissue.

CK is, in most cases, repeatable.

Answers to your questions 1. and 2.:
Radiation treatment generally has less side effects and risks compared to surgery, due to the former's non-invasive nature. (Again, please go to the link I provided to learn more about the risks presented by surgery and radiation therapies.) No treatment is without significant risk, however. You do generally stand a better chance of hearing preservation with radiation treatment (CK is reported to have the best results for hearing preservation) than compared with surgery. And the risk of facial nerve damage (resulting in temporary or permanent ipsilateral paralysis and/or numbness) is generally much greater with surgery than with radiation. All forms of treatment run the risk of worsened balance; some surgeries (e.g., translab approach) require cutting the vestibular nerve and removing it on the affected side! Ask all the doctors you consult with what cranial nerves they anticipate not being able to preserve.

Also beware semantics. "Preservation of hearing" is often a term used to denote preservation of hearing at a "useful level" (some degree of hearing on the affected side remaining after the treatment). Ask the doctors you consult what are the chances in percentage terms of "preserving hearing at the CURRENT LEVEL pre-treatment." Similarly, "preservation of the facial nerve" is often bandied about by doctors but misinterpreted by patients. The anatomical continuity of the facial nerve may indeed be preserved with a given treatment, yet the FUNCTION of the facial nerve may be damaged or destroyed. That's because scraping a tumor off the nerve or irradiating the tumor that is adhering to a nerve will not cut the nerve but will possibly ennervate it (possibly permanently). Again, CK and GK are cited to have far less risk to the function of the facial nerve compared to the risk with surgery. My post linked to above goes into much greater detail.

There's only so much time to craft a carefully worded post that respects everyone's opinions and choices on this board. If I seem disrespectful of treatment choices I have personally decided weren't right for me, it's only because I haven't had dinner yet and I'm rushing through writing this post! In the end, I truly believe that whatever choice a *fully informed* patient makes is the RIGHT CHOICE FOR THEM.

Best wishes,
Tumbleweed

L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

er

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Re: Confused Newbie from NY
« Reply #9 on: June 13, 2008, 11:13:42 pm »
Hello Jimbo,
I am so sorry you have an AN.
I was 54 when I had surgery and I have had my 3rd MRI this year showing no AN.
I do feel very blessed to have had a good staff of doctors and nurse to make me very safe and comfortable.

Good luck on what ever you decide.
eve

cmp

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Re: Confused Newbie from NY
« Reply #10 on: June 14, 2008, 06:11:09 am »
Hi Jimbo,

So sorry you have been diagnosed with an AN, but glad you have found this site to bring your questions to!

Long term studies do exist at this point showing no statistical difference between radio- and microsurgery in preventing recurrence of an AN, so I'm surprised your surgeons (who seem to be top notch docs at a top notch facility) seem to have a bias in favor of microsurgery. Perhaps the position of the tumor or some other factor explains it?

I know that in my case, after a regrowth of my AN after 20 years (very unusual!) was diagnosed this February, I was told my none other than my neurosurgeon (Dr Robert Martuza) that I should explore radiosurgery. He actually referred me to the chief of neurosurgery at MGH, Jay Loeffler, outlined all the reasons going with radiosurgery would be an excellent option (the non-invasive, effective, and much easier/more risk-free recovery factors were all mentioned!), and said I owed it to myself to seriously consider it before deciding if I want to book neurosurgery. I was quite stunned at the time, since back in '89, radiosurgery was used only on elderly patients or poor surgical risks.

Ultimately, I did decide to go with microsurgery (scheduled for me in a bit over a week!) I'm 49 and in good health, and since I suspect cranial radiation as a child may have caused my AN, I opted for the known risks and discomforts of surgery, which did give me 20 good, tumor-free years last time around.

So, I think you should take advantage of the small size of your AN to research till you are comfortable with a treatment plan, then go with it, knowing you have made the right choice for you!

Anyway, a warm welcome to this forum, and good luck with your decision.

Carrie

5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

Mickey

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Re: Confused Newbie from NY
« Reply #11 on: June 14, 2008, 10:18:14 am »
Hi Jimbo! I`m Mickey from NYC and am turning 60. I see that you have joined the club. I have an AN diognosed last year at this time approx.1cm. I have been watching and waiting so far with not much of a change. It seems that you have a small AN and I just wanted to reassure you that you have time to explore all options. We seem to have alot in common and was hoping to share some things with you if needed.  Keep in touch! Mickey

sgerrard

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Re: Confused Newbie from NY
« Reply #12 on: June 14, 2008, 10:41:29 am »

If I seem disrespectful of treatment choices I have personally decided weren't right for me, it's only because I haven't had dinner yet...


No problem. The position of the ANA is that every member can freely express their own opinions about treatment options, whether they are balanced views or strongly tilted one way or another. The only rules are that you can't direct negative comments directly at another member, and you must recognize that others have different and equally sensible points of view, leading them to different conclusions and different treatment decisions.

You're good. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Tumbleweed

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Re: Confused Newbie from NY
« Reply #13 on: June 14, 2008, 11:13:57 am »
One other point: some people worry that radiation treatment might cause a new, *cancerous* tumor to grow in place of the benign AN. But statistics show that this occurs no more often than cancer occurrence in the general population. Knowing this, I personally had to put aside my long-held bias against any form of radiation treatment and concluded that CK was the best treatment for me. That is, I now feel that it is the lesser of several evils (surgery, do nothing, standard FSR and GK being the other options, in no particular order). I also think that GK is a good option, just not quite as successful statistically in terms of preserving hearing at the pre-treatment level.

Good luck with whatever path you choose.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Debbi

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Re: Confused Newbie from NY
« Reply #14 on: June 14, 2008, 03:44:18 pm »
Hi Jimbo-

I am curious to know how your consult w/Dr. Isaacson went? 

Let us/me know how you're doing, okay?

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

 


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