Newbie in New York

[MeLen]

Hi JLR,

I found the information in the ANA's "Support Group" drop down.  They have a list of "scheduled meetings" there, and they also have "leaders" broken down by state.  Here is some information: 

http://www.anausa.org/scheduled_meetings.shtml

http://www.anausa.org/support_groups_by_state.shtml

Hope this helps.  I have found this forum and the ANA to be an incredibly valuable resourse!!!!

~  MeLen

[ombrerose4]

Welcome to the forum! Although I am sorry to hear about your husband's AN, you will find this forum to be a great source of information, emotional strength and laughter. There are many fine surgeons in NY, mine were Dr. Bederson and Dr. Choe at Mt. Sinai and they are both superb surgeons. They are also caring human beings. Good luck!

[kareno]

Hi MeLan: 

My husband is post-op for a 3cm AN 6 months ago he is doing very well.  He had his 10 hour surgery at Tufts Medical Center in Boston Dr. Carl Heilman.  He lost his hearing in the ear but all else is good.  Please make sure that all Neurosurgeons that you seek opinions from are experienced with the removal of AN's and that they answer all of your questions and concerns. 

This forum has helped me immensely and it will certainly help you.   You are in my thoughts and prayers!!

Karen

[pjb]

Hi, I just wanted to know how your meetings with the N.Y. surgeons went...

Best Wishes,

Pat

[MeLen]

Thank you for following up Pat....

Well, as we expected, just more confused.  We've consulted with three surgeons total.  The two we're deciding between are both top docs in New York City - Dr. Roland and Dr. Selesnick.  We haven't met their counterparts yet. 

As well as trusting and researching that they are indeed both highly qualified and experienced, they also both presented well and were very informative and kind. 

One had a flat opinion of Translab.  The other felt that a CAT scan would be best to show more "map" of the situation and make the decision between whether it would be best to do Translab or Retro.  Also, based on that CAT scan decision, that would also make a difference in his counterpart. 

So my husband Len is having a CAT scan tomorrow and we'll take it from there.   Still not sure if we're going with that surgeon, but at least it will get the ball rolling if need be. 

Interesting in regards to this neuroma's size - the original MRI diagnosis stated 3.9 cm,  one surgeon measured and said it's 3.5 and today's said it's about a 3.0.  All said it's "large" and must come out asap. 

I haven't gone into previous posts yet about CAT scans (in addition to the original MRI), but is this common ??

MaryEllen

[jross]

Hi MeLen
   Just needed to respond to this.  I had a 3 cm tumor and contacted two NY doctors,  one being the team with Dr. Post.  I also sent my films to House and talked at length with Dr. Brackmann.  I based my decision on the type of surgery I wanted (translab) due to the size of my tumor.  Both of the NY Drs. recommended retrosigmoid. So I went to LA and was very happy with my decision.  Good luck.  Jill

[mandy721]

Mary Ellen,

My husband had a large AN, about the size of your husband's, removed 16 months ago.  We are also in NYC and consulted with some of the same doctors you have.  We saw Dr Gutin, a neurosurgeon at Sloan Kettering, whom we liked very much.  He partners with Dr. Selesnick, who we also consulted with.  I know that Selsnick also partners with someone else.   Drs Roland and Golfinos were very impressive and it was a hard decision choosing.  Ken had his surgery  At Columbia with Dr Sisti.  Three out of the four suggested trans-lab, and the other retro-siigmoid.  Since Ken's hearing in the AN ear was pretty good, he chose retro in the hopes of saving his hearing.  Sadly that didn't happen and he continues to deal with many post surgical issues.

When Ken was diagnosed, he was told it had to come out within the next few months.  I urge you to do as much research and thinking on this.   It is hugely important that you have some time to digest the information and make an informed decision, after all this is brain surgery!

Mandy

[mandy721]

Hi MeLen, I'm in NY and have been looking for a support group to no avail. Can you share where the group is meeting on the 20th? Thanks very much, JLR
(Oh, I met with 4 doctors before I made my decision for CK. One of the consults was with Dr. Christopher Linstrom from the Ear and Eye Hospital on 14th street, NYC. He is a surgeon who has performed many AN surgeries. But because my hearing is pretty good, he highly recommended CK. )

The meeting might be the Long Island one.

[MeLen]

Thanks Mandy,

I'm sorry to read about your husband's complications, and I hope that they do improve soon.  Although he is 16 months post-op, I've read that sometimes it does take this long for things to improve. 

We haven't been to Dr. Sisti. 

We happen to have a friend who is a neurosurgeon here on Long Island; however, he does pediatrics so wouldn't do my husband's surgery.  He had excellent points -  "Doctor shopping is a very tricky and risky business.  Often times the fact that they have publications and fancy credientials doesn't necessarily make the good surgeons.  What matters is their HANDS!"  Unfortunately, he wouldn't comment on any of the doctors we consulted with because he's only heard of them, but never worked directly with them so wouldn't give a first-hand opinion.  I understand completely. 

However, I happen to work along with Stony Brook University Medical Center, and we think we might consult also with the surgeon that does them here - Dr. Raphael Davis.   Our neurosurgeon friend highly recommended him based on actual first-hand experience.  He said he's the only brain surgeon he would ever trust he or his family with. 

Although.... this will just confuse us even more now.   

I've still been wondering about the incidence of CT scans in addition to the MRI for any style diagnosis.  Did any of the doctors you consulted with say that your husband needed to have a CT scan making the difference of surgery style?   Although they are all amazed how much he can still hear based on the results of the audio testing, they all still feel he will loose his hearing.   My husband is absolutely okay with that - he's more concerned with the other complications.

MaryEllen

[pjb]

So glad your comfortable with both surgeons may I ask which one suggested the Translab.

Best Wishes,

Pat

[mandy721]

Thanks Mandy,

I'm sorry to read about your husband's complications, and I hope that they do improve soon.  Although he is 16 months post-op, I've read that sometimes it does take this long for things to improve. 

We haven't been to Dr. Sisti. 

We happen to have a friend who is a neurosurgeon here on Long Island; however, he does pediatrics so wouldn't do my husband's surgery.  He had excellent points -  "Doctor shopping is a very tricky and risky business.  Often times the fact that they have publications and fancy credientials doesn't necessarily make the good surgeons.  What matters is their HANDS!"  Unfortunately, he wouldn't comment on any of the doctors we consulted with because he's only heard of them, but never worked directly with them so wouldn't give a first-hand opinion.  I understand completely. 

However, I happen to work along with Stony Brook University Medical Center, and we think we might consult also with the surgeon that does them here - Dr. Raphael Davis.   Our neurosurgeon friend highly recommended him based on actual first-hand experience.  He said he's the only brain surgeon he would ever trust he or his family with. 

Although.... this will just confuse us even more now.   

I've still been wondering about the incidence of CT scans in addition to the MRI for any style diagnosis.  Did any of the doctors you consulted with say that your husband needed to have a CT scan making the difference of surgery style?   Although they are all amazed how much he can still hear based on the results of the audio testing, they all still feel he will loose his hearing.   My husband is absolutely okay with that - he's more concerned with the other complications.

MaryEllen

It is important to find out how experienced the surgeon is with this type of surgery:  finding someone who has done a lot of them is important in my opinion.  You can ( should) ask about outcomes with the different approaches, esp about complications with the different surgeries.   In my talking to people who have had severe complications, most of them have had retrosigmoid. 

A CT scan was never suggested by any of the surgeons we consulted.  At the initial consultation with the MRI film, each of them provided their recommendation.

This is a hard decision.  I wonder if your friend the neurosurgeon could ask his colleagues if any of them have any experience or know of the surgeons you have already consulted with.

I know how hard this decision is.  Be strong and take the time you and your husband need to make the decision you will be comfortable with.

Mandy

[MeLen]

Thanks again Mandy.   Were you able to find the information on the support group locations and dates?  If so, will you and your husband be attending the one on Long Island on the 20th?  (or maybe there is one closer by where you live....)

I called HEI this afternoon and a physician called me back 10 minutes later.  We spoke about my husband's neuroma, it's 3.9cm (3.5 cm maybe) size, and his symptoms.  Of course this his personal opinion only, but based on my husband's case he immediately offered that Translab is the only route they would go.  I'm actually sending him the MRI and accompanying medical reports and he said he'll call me again once he has all that in front of him.   My husband is contemplating the trip to HEI now for his surgery - which is complicated but certainly do-able. 

We're still also waiting for an appointment with both Dr. Roland's and Dr. Selesnick's counterparts. 

MaryEllen

[leapyrtwins]

I've never had a CAT scan - or a CT scan.

I had a MRI prior to my surgery (retrosigmoid) which lead to my diagnosis and I've had annual MRIs post op.

Not sure how common a CAT scan or CT scan is when you have an AN.

Choosing a doctor who has lots of experience in treating ANs is a MUST - whether the patient decides on surgery or radiation.  Although the docs @ HEI are top-notch, there are also numerous docs who treat ANs that don't work at HEI. 

I found an excellent, highly-qualified doctor right in my own backyard and I couldn't have asked for a better outcome.

Obviously it's a personal decision, but if someone can't - or doesn't want to - go to HEI there are wonderful alternatives.  There are lots of great AN docs in NYC.

Jan

[MeLen]

The surgeon who requested the CT scan claimed that it would help the team decide between the Translab and Retro.  He claimed that there is different bone structure between the two different approaches, and the CT scan would show that bone structure. 

We did like the two surgeons we consulted with in NYC, and I've learned that they are both great.  We're looking forward to meeting their counterparts.   We're very fortunate we only live about one hour away from there.

I'm not sure, but I would guess all major cities probably have a "top-notch" team ... hmmmm .... or maybe not?   

MaryEllen

[another NY postie]

Hi Maryellen,
I am also a NYer - just north of the city.  I ended up going to HEI in LA but only because my neuroma was small and I wanted middle fosa surgery and the dr. in NYC did not either do it or not enough for my comfort.  I think I saw every top team in the city.  You will know when you get the right match, you really will.  One thing that I would ask about also beside the surgery is what happens after...how long in ICU etc.  The reason that I ask is that a friend just had AN surgery in NYC and they didn't have a bed for her in ICU she spent the entire night after brain surgery in recovery.  I am sure that is not common but I was shocked.  I have also never heard of a CT for this type of surgery but maybe it is just something that helps that particular dr.  Each one seems to have their particular approach or technique.  I would ask who actually removes the tumor, who goes in and out etc because the neurontolgist and neurologist handle it differently depending on preferences, etc.  You can pm me on any of the doctors you see - there is one who you will feel most comfortable with.
In terms of the translab vs retroid...how is his hearing on that side?
Cheryl