Author Topic: Just diagnosed ...Suggestions Please  (Read 4460 times)

tdandu

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Just diagnosed ...Suggestions Please
« on: October 09, 2014, 09:18:05 pm »
Hello All,

First of all, I'm so glad that I found this wonderful forum. My husband has been diagnosed with AN (with differential diagnosis of menengioma) in the left ear. 2.2cmx2.4cmx2.1cm tumor. The last few days have been very traumatic for us going from the 'why me' stage to 'lets fight this' and wavering in between. We met the ENT specialist today and were told that it had to come out because of the medium-large  size. So radiation wasn't an option. He has reasonable hearing in the left ear left. However, as stupid it may sound, the doctor said that the MRIs (CDs) still didn't reach him yet (????) and he said looking at the report of the MRI that their priority is to first remove the tumor and preserving the hearing is just a bonus (which i think is reasonable going through all the posts here) . We have picked the CDs later from the hospital.

We stay in Naugatuck,CT and have consulted Dr.Elias Michealides from Yale today. He will work with Dr. Ketan Bulsara (Neurosurgeon). We will be seeing the Neurosurgeon soon. Anyone has any experience with these doctors ? Any recommendations for good doctors (with AN experience) in CT, NY, MA areas ? We might even consider Atlanta, GA if there are good surgeons as my family is based out of GA.


I will be contacting the House clinic for the free consultation. Can someone please guide us on the next steps . Any more recommendations on second opinions ? How to approach doctors for second opinions. Also, I have read that many people get their surgery from HEI. Wondering on the stay there ? Don't you need post op consultations ? How are those handled ? How long do we need to stay in LA?

Jim,

I have seen that you are from CT and were operated by Dr. Issac Goodrich. Looks like he is retired now (or am I wrong ? )

Thanks everyone in advance !



CHD63

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Re: Just diagnosed ...Suggestions Please
« Reply #1 on: October 10, 2014, 06:26:51 am »
Hi tdandu and welcome to this forum of caring, supportive new friends .....

Although I am sorry your husband has been diagnosed with an acoustic neuroma, I am glad you found the ANA and this discussion forum.  There is a wealth of information on the ANA web page, as well as here on the forum.

Dr. Rick Friedman at Keck Medical Center at USC in Los Angeles is another excellent physician who does free consultations.

My first surgery was done at Duke in North Carolina, which is a 5 hour drive from my home.  My second surgery was done at House Ear Clinic in Los Angeles, which is an across the country flight from where I live.

In the first case, I stayed with my sister for a few days pre and post-op.  The second one, we made arrangements beforehand to stay in St. Vincent's (the hospital HEI uses) guest house, called Seton Hall.  It was very inexpensive, clean, comfortable, and just across the way from the hospital (with a large, well-lighted tunnel between to use at night or in bad weather).

As for follow-up care, in both cases I was required to stay in the area for a week, to remove the staples/stitches.  The vast majority of any complications that could occur happen within the first few days following surgery.  I never had any complications, but in both cases, my doctors told me they would refer me to a local doctor, if needed.

My husband drove us home from Duke about 9 days post-op.  We flew home from LA on day 13 following surgery with no issues whatsoever.  I think they required 10 days post-op before flying.  We just made our reservations with a little extra padding in case of problems.

Let us know how it all goes for you and urge your husband to join the forum, as well.  Thoughts and prayers for discernment during the decision-making process.

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

PaulW

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Re: Just diagnosed ...Suggestions Please
« Reply #2 on: October 12, 2014, 12:05:09 am »
I would not dismiss radiation, and would seek a second opinion.
My understanding is that most centres have a cutoff of 12.5cm3 as the maximum volume of the tumor.
This is often expressed as a maximum size of 3cm...

Your tumour has a volume around 4.4cm3. Clearly below the maximum recommended volume for radiation.

check out these websites

http://www.irsa.org/an%20guideline.pdf

http://www.myacoustic.org/


10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

keithmac

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Re: Just diagnosed ...Suggestions Please
« Reply #3 on: October 12, 2014, 02:38:21 am »
Volume is calculated using all three values, around 5.8 ml if my math is anywhere near, but admittedly still well below any 12.5 ml cut-off point for radiotherapy.

I'd certainly agree that radiation is worth considering but the age of the sufferer is important in that as practitioners may be uncomfortable using it on younger patients because the long-term effects are unknown.

The report is interesting but with a publication date of 2006 it's eight years old.
« Last Edit: October 12, 2014, 02:43:46 am by keithmac »

tdandu

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Re: Just diagnosed ...Suggestions Please
« Reply #4 on: October 12, 2014, 12:43:22 pm »
Thank you everyone for the suggestions. We are in the process of setting up appointments for second/third opinions. Will keep you posted. As stressful as this is , having people guide us is a blessing at this point.

New girl

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Re: Just diagnosed ...Suggestions Please
« Reply #5 on: October 12, 2014, 04:39:15 pm »
If you are up for a drive to Boston:

Mass General:  Frederick Barker
Mass Eye and Ear:  Daniel Lee or Michael McKenna

9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

Hokiegal

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Re: Just diagnosed ...Suggestions Please
« Reply #6 on: October 15, 2014, 08:20:49 pm »
Hi there! So glad you found us.  Sounds like you have some good info already; just wanted to suggest two more options since you mentioned Georgia.  The first is Emory in Atlanta.  I haven't dealt with them personally, but have seen reports from others here.  The second is MUSC in Charleston, SC.  They did my surgery in 2011 and I received excellent care for a large and complicated tumor.  Dr. Sunil Patel (neurosurgeon) led my surgery.  The ENT (otolaryngologist) is Dr. Paul Lambert, and they typically work together.  I was able to return home after five days, and we made the drive in about three hours.  May be even closer for you depending on where in Georgia your family is located.  Best wishes to you both, and please continue to ask questions!
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni