ANA Discussion Forum
General Category => AN Issues => Topic started by: MeLen on November 07, 2010, 05:24:57 pm
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Hi All! So glad I've found this site. My husband was just diagnosed with an AN. 3.9 cm. (is that unusually large?) I plan to "dig in" to reading some of the previous posts as well as possibly contacting the ANA for the WTT.
We've already visited one surgeon (Dr. Smouha) whose opinion is definately surgical removal and wants us to see his neurosurgeon counterpart at Mt. Sinai Medical Center, Dr. K. Post. We also have appointments set for two other surgeons this week. Both in New York City - Dr. Roland and Dr. Seleznick.
Anyone have any feedback on any of these surgeons?
Thank you ~ MeLen
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Welcome, MeLen.
Unusually large is a relative term. 3.9 is bigger than many, but smaller than some. It is big enough that surgery is probably in his future. I have definitely heard of Roland and Seleznick, and maybe the others too. Some New York area members will fill you in.
Steve
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Sorry to hear about your husband's AN both surgeons Drs. Roland and Selesnick are very good ask them many questions and continue to do more research. Also alot of people go to HEI in California that is suppose to be the best you could even send the reports to them and they will review it and give you a free consultation.
Best Wishes,
Pat
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MeLen,
The NY doctors you mention are all excellent. I didn't know Dr. Post was still practicing. My AN doctor is also at the Mount Sinai School of Medicine. His name is Dr. Won-Taek Choe, and I have the highest regard for him. Even though he is a surgeon, and I'm leaning toward radiation (I'm 64 and my AN is small), I nonetheless rely upon his judgment, which has proven to be as good as the team I had at the Mayo Clinic.
Jeff
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Sorry to hear of this diognosis. Now that it has been discovered its time to take care of it and come back strong. AN`s are very treatable especially with the best doctors. Two that you have mentioned are a team, Dr`s Roland and Golfinos. Although I`m Wait + Watch they are my Dr`s for going into 4 years. I`ve been around they AN community actively and have got to know alot about them and their steady work done with AN`s now for quite some time. They get my highest recomendation at NYU Medical center. Please stay posted you have a great support group here who will keep you and yours in their prayers. Best Wishes, Mickey
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Hi, MeLen - and welcome to the ANA discussion forums!
Although we're never really happy to learn of another AN diagnosis, at least you've found a website that is focused on this relatively rare skull-based tumor with forums populated by folks who can empathize with your husband as well as offer practical suggestions as you both travel this road. Fortunately, you seem to be on the right track with AN-experienced neurosurgeons in your area.
Not that it's a contest but the size of your husband's AN (3.9 cm) is usually termed 'large' - but many grow even bigger. On discovery, my AN was measured at 4.5 cm and we've had members with ANs that were 8 cm, so although 3.9 cm may be considered large, they can grow even larger and still be successfully removed. Mine was.
Enjoy your reading! This is a very acrtive site with many contributing members who are eager to help you and your husband in whatever way we can. Just ask.
Jim
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Hi, MeLen.
As others have said, your husband's AN is considered large. It's also generally considered to be too big for radiation - the threshold is typically 3 cms or smaller - so surgery is the logical choice.
You've mentioned some great doctors in your area. I've heard only good things about Selesnick and Roland & Golfinos. I don't think your husband could go wrong with any of these docs.
Best,
Jan
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Hello, welcome to our club, and your husband as well!! You will find a ton of info on here, probably almost too much sometimes! But if you have any questions feel free to ask...or vent...lots of people vent on here and its encouraged! Take care and good luck!
Jay
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Hey, welcome and this is the place for info on ANs. I had my surgery at Mt. Sinai with Dr. Smouha and Dr. Bederson--I recommend them both, and the hospital was fantastic. Any questions please send me a message.
Neal
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Hi MeLen .....
Others have already answered your questions so I am just adding my welcome to this forum. So glad you found us. Hopefully your husband will join in the discussion, as well. If not, ask away with any more questions you have.
Many thoughts and prayers as you weave your way through the research and decision-making process (in many ways the hardest part).
Let us know how you are doing.
Clarice
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MeLen,
Sounds like your husband is in good hands. I am so glad you found this site now. It has been such a valuable resource for me. I am sure that it will be helpful to both you and your husband. Welcome to the club! Susan
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Hi MeLen-
My surgeons were Roland and Golfinos at NYU. Love them both - great surgeons, and great people. One of the things I particularly like about them is their responsiveness. Leading up to and after surgery, seemed like I had a million questions and they both quickly and patiently responded to each email. I do have some post surgical complications so I still see Dr. Roland fairly regularly.
Those of us the the NY area are very lucky to have some excellent choices - Golfinos/Roland, Choe, Steig, Selesnick.
If you have any particular questions about Roland/Golfinos, please send me a Private Message. I am also very happy to talk to either you or your hubby on the phone if you wish.
Best of luck,
Debbi
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MeLen,
Last night I was responding to your post and I lost my connection and my response...needless to say frustrating, but it seems everyone has given you great advice. I just want to make sure you have ordered the literature from the ANA, the booklets are very imformative and there is also a thread (attached)about questions to ask when you meet with a Dr and I suggest you print it out and add anything else you might want to know to the list. I made sure to write everything down that the Dr's told me because it was a bit overwhelming and as soon as I walked out of the office it seemed like I forgot everything they just told me ;)
http://anausa.org/forum/index.php?topic=12217.0
I also want to add my warm welcome to you and your husband and please feel free to ask anything that is on your mind, you've come to the right place ;) and we're here to help in any way we can.
Take care,
Liz
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Thank you everyone for your responses! We have an appointment to consult with Dr. Selesnick on Thursday. We saw Dr. Roland on Monday. I've been looking at archived discussions. There happens to be a support group meeting in my area on the 20th. Great information on this site!
MeLen
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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. )
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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
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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!
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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
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Hi, I just wanted to know how your meetings with the N.Y. surgeons went...
Best Wishes,
Pat
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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
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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
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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
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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.
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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
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So glad your comfortable with both surgeons may I ask which one suggested the Translab.
Best Wishes,
Pat
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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
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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
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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
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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
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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
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Hi Cheryl,
He really can't hear much at all out of that ear. We're told by three surgeons now that nomatter what approach is used, there is the high probability he will lose his hearing anyway. He's fine with that - his concern lies with the facial nerve and other complications.
Good point - I will ask at our next consultations who actually does the tumor removal. I assumed it would be the "oto" part of the team, but maybe not.
I'm very surprised to hear that your friend spent the entire night in recovery. I guess what really matters though is that she was properly watched over and attended to. I would guess it was upsetting for her though.
MaryEllen
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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
I am glad that you spoke to HEI, I was very impressed with a call from the surgeon in just a week of receiving my information.. both of you will know what to do when it is time for a decision and I am sure it will be the right one and if is flying to California I am sure you will be very satisfied.
Best Wishes,
Pat
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My neurosurgeon removed the part of the tumor in the brain, and the "oto" removed the part in the auditory canal. Neither of my doctors asked for a CT scan, only an MRI.
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That's very interesting. Thanks!
MaryEllen
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I am just six weeks post-surgery (retro-sig) and met with Selesnick/Gutin and Roland/Golfinos as well as House Institute (they offer a free phone consult if you send a copy of your MRI).
I found it helpful to ask each doctor/team the questions in the ANA booklet and some other questions I had and chart the results. The biggest differences were in the number of years each doctor has been doing ANA operations and in number of procedures each team has done together. I also asked each to estimate the percentage chance they predicted of facial nerve damage, and how they mitigate against it. You also might want to ask what functions the docs do, and what the fellows do, since the teams you are looking at both work in teaching hospitals.
It was a tough decision, but I went with Roland/Golfinos. I can't tell you how comforting it is was, both pre- and post-op to be able to email questions and get prompt answers.
Feel free to PM if you want to communicate directly.
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My son is a 3rd med. student at Columbia. He gave my file to Dr. Michael Sisti at Columbia Presbyterian who is one of 3 doctors in the country board certified in neurosurgery, radiation oncology and otolaryngology. Because I had 2 different treatments recommended for my AN (GK and surgery), his opinion tilted me toward the surgery, which I'm having Nov. 30 here in Chicago. As a New Yorker, you have a lot of excellent choices in doctors, so take your time and find the right surgeon for you.
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When & If I have surgery, it will be Dr. Michael Sisti at Columbia Presbyterian.
Instantaneously, he puts you at ease. According to him, Quality of life for his patients is most important ...
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I think we'll be adding Dr. Sisti to our list of doctors we'll be consulting. I'm very lucky we live only about 60 minutes from New York City which has several outstanding surgeons and hospitals.
We have an appointment with Dr. Golfinos next Wednesday. Making more appointments with some others too.
So glad we have this forum to consult with. I've learned soooooooo much here !!
MaryEllen
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Hello MeLen,
Welcome to the group! I had my surgery performed by Drs. Roland and Golfinos. My tumor was also fairly large (3.0cms). My surgery went very well and my recovery also went quite well. I think these two doctors are highly skilled doctors who actually have a great bedside manner. They really care about you as a patient. Dr Roland is the doc who follows up with all of the patients. Although my surgery was 8 years ago, I still see him every year and a half or so -- just as a follow-up. I can tell you that he has always given me as much time as I needed and explains everything to me. No issue or question is too small for him. I admire this man greatly. Just as an aside, he volunteers two weeks a year to go to Africa and perform Cochlear implants in children over there.
Just as much as I adore Dr. Roland and Dr. Golfinos, I loved all of the nurses and support staff at the hospital. They are so caring and professional.
Hope this info. is helpful.
MaryAnne
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Thanks MaryAnne,
It's so good to hear from first hand patients. It's admirable that he volunteers some of his time for such a worthy cause. We're meeting with Dr. Golfinos next week. We're also following up with Dr. Steig (Dr. Selesnick's counterpart) soon. We'll also be making an appointment with Dr. Sisti. My husband has spoken with Dr. Friedman at HEI, and is interested in that route now too.
My husband's AN is "large", so although we know it must be taken care of asap, we're trying to cram lots and lots (and lots) of research daily towards his decision.
We've consulted with and/or have spoken to six "experts" so far. It's been very enlightening, although we've had very strong differences of opinion regarding Translab vs. Retrosigmoid. I know that there is lots of information on this forum and through the ANA about these, so I'll continue to read and re-read about the pros and cons of both.
If only all the surgeons agreed to one approach, a decision would be so much easier - as everyone on this forum knows very well.
Thanks ~
MaryEllen
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Thanks MaryAnne,
It's so good to hear from first hand patients. It's admirable that he volunteers some of his time for such a worthy cause. We're meeting with Dr. Golfinos next week. We're also following up with Dr. Steig (Dr. Selesnick's counterpart) soon. We'll also be making an appointment with Dr. Sisti. My husband has spoken with Dr. Friedman at HEI, and is interested in that route now too.
My husband's AN is "large", so although we know it must be taken care of asap, we're trying to cram lots and lots (and lots) of research daily towards his decision.
We've consulted with and/or have spoken to six "experts" so far. It's been very enlightening, although we've had very strong differences of opinion regarding Translab vs. Retrosigmoid. I know that there is lots of information on this forum and through the ANA about these, so I'll continue to read and re-read about the pros and cons of both.
If only all the surgeons agreed to one approach, a decision would be so much easier - as everyone on this forum knows very well.
Thanks ~
MaryEllen
Hi, I am sorry I have not been on the computer that much I just wanted to add when you visit with Dr. Stieg and Dr. Selesnick please ask exactly who will be doing the surgery !!... I hope you and your family had a nice Holiday and I am glad to read all the responses and you are still researching this, you do not how important it is to ask many many questions and in the end you and your husband will feel comfortable with your choice.
Best Wishes,
Pat