ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Bobbibl on August 03, 2008, 03:30:11 pm
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I am a 24 year old male recently diagnosed with a 4cm AN. My hearing on that side is almost completely still there. Where should I go for treatment. Hearing conservation is very important to me. I am currently living in NJ.
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Hi Bobbibl,
Welcome to the forum and sorry for your diagnosis. I just would like to share your anxiety! i am in the same boat as you are, I was at the same age when diagnosed and had two retrosigmoids, (you can read about it in my signature) too!
During my first surgery i did not have a choice, once the doctor saw my MRIs, he immediately hospitalized me (I even was not allowed to get home and have stuff for my stay in the hospital - my relatives had to bring it later)!
But now since I have more time and know that i need another surgery i am looking for good surgeons across the planet (I forgot to mention I am from Bulgaria, Europe!)!
I have already got in touch with the House Ear Institute (HEI) in LA, California - they are top-notch - lot of the members had their surgeries performed there - KateB (she was one of the first to write to me and to give me detailed information!, JerseyGirl2, Bridget, Catherine and many others). I am sure they will go along the thread but just in case you may need to send them personal messages.
I have also heard of very good outcomes form members who had their surgeries in Cleveland Clinic - Pembo and MAlegnat can help here.
Another centers i have heard excellent recommendations of are the Michigan Ear Institute and Ear Institute in Chicago - Jan is a great reference to the latter!
I have already received some information from Dr House in House Ear Clinic in LA so if you need it, just PM me!
As far as I got from the site, those who are insured in the USA get paid for the surgery, hope you won't have any problems about this!
Otherwise it is VERY VERY expensive (you hear it from the horse's mouth ;) )
Best wishes in your search, I can assure you that you found a great place full of information and willing to help people!
Ask any questions you have and hang on here,
Hrissy
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Hi and welcome.
I can't add a whole lot to Hrissy's reply, but there is an excellent group at NYU - Drs. Golfino and Roland. Debbi had surgery there recently and so did a few others on this forum.
Jan
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I had my surgery on July 22 at University Hospitals in Cleveland with Dr. Bambakidis and Dr. Megerian. The standard of care I received was excellent.
That being said, you should be able to find good suggestions from the east coasters out there. I'm sorry you have to deal with this but as you will see, there are many of us that can support you, share stories, and help out along the way.
Best,
Marci
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Hi there,
You are my son's age!
I understand the quest for maintaining your hearing. Is your tumor 4cm? If so, that is considered a large tumor. If by chance it were 4 mm, then that is another story.
A large tumor often limits the choice for the type of treatment. For example, at UPMC when I researched they wanted the tumor to be less than 3 cm in order to do GK. With a 4 cm tumor, doctors will most likely recommend the translab surgery because of the access to the tumor. I am not trying to rain on your parade, but know with that type of surgery, hearing loss is the norm. What becomes equally important to many, is preserving the facial nerve.
In my opinion, House Ear Institute is the gold standard because diseases of the ear are their only focus. Even if you can't travel to Los Angeles, the doctors there will do a free consultation over the phone. They perform many of these surgeries per week.
If I were you, I'd send it there for the consultation. The doctor will spend as much time as you want answering your questions.
From the House Ear Clinic Website:
House Ear Clinic CONSULTATIONS
If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).
Send the MRI scans by express delivery (be sure that you are able to track the package) to:
House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057
You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:
Telephone: (213) 483-9930
FAX: (213) 484-5900
All the best to you,
Kate
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Hi Bobbi-
So sorry to hear you have an AN! Not the diagnosis any of us wanted. The good news ("good" being a relative term) is that you are close to some excellent medical teams.
As Jan mentioned, I had surgery with the Golfinos/Roland team at NYU on April 30. If you do a search of either doctor's name here on this Forum, you'll find quite a few others who also went to NYU with this team. Dr. Golfinos also heads up the Gamma Knife Unit at NYU, so he can talk to you about non-surgical options as well.
There are also a number of other highly skilled and experienced teams in NYC. Wendysig just had surgery with Dr. Choe - search for "wendysig" to contact her directly. She had a great outcome and is just barely a week post surgery right now.
Also check out Dr. Selesnick - I beleive he is Weil Cornell Columbia Presbyterian.
I sent a CD with my MRI films to House and had a free phone consultation with them, which was extremely helpful. I also met with Dr. Benitez and Kwartzler at Overlook Hospital.
Main thing to remember is that you need to find a treatment option that you are comfortable with, and a treatment team that you are comfortable with. AN's are usually slow growing, so you have some time.
If you want to chat on the phone, just send me a PM and I'll send my phone number.
Good Wishes!
Debbi, from New Jersey
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Hey Bobbibl,
I had a 4cm right side AN removed on 6/9/08 @ Allegheny General in Pittsburgh. Being recently diagnosed I understand you are freaked out and have a ton of questions. 4 cm is considered LARGE. Translab is probably what most or all Dr.'s will recommend. When a tumor reaches that size, the main goal for both yourself and your surgeons is survival. With the Translab approach, it gives the surgeon the best possible angle. I'm not going to sugarcoat this for you-you will lose 100% of hearing on your AN side. Check out my profile for my email if you would like to get a hold of me. I have no prob lending my Good Ear to help you out & answer questions. As said above, I had it removed 6/9/08 and I will be returning to work the last week of August. Considering the situation, I had an awesome experience with the surgeon's and facility I chose.
Take a step back, deep breath, and listen to the folks on this forum. They have a wealth of knowledge to share. You are already a step ahead of me. I didn't start reading this forum until post-op. I wish you the best & please do not hesitate to email me.
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Hi Bobbibl.
I'm beginning to think they should change NJ's motto from "The Garden State" to the "AN State". Seems to be a lot of us from the NJ/NY area around here. :D
The bright side of that is that there a plenty of folks who have had surgery recently in your area (I'm from NJ but living in Nashville for the moment, so can't help you with any local dr's.) and can give you some feedback. This is a great place to get info that you can't get from the doctor.
Good luck with your research and keep us posted.
Lori
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If I ended up having the translab approach performed, would I be eligable for either cros or baha hearing aids?
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I don't know much about the cros, but I know you would be able to get a BAHA ( assuming there are no other medical reasons you couldn't get one). Sometimes they do the implant for the BAHA at the same time as your AN surgery.
This is another thing you'd want to discuss with any potential surgeons. What's one more questions, right?
Lori
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I would not be able to give you info on those devices. I wish I could. My team & I never discussed them. However I am sure plenty of folks on this forum could. You may want to post that question in a different topic, maybe under Hearing Issues. I can tell you that having Single Sided Deafness is not as bad as it sounds(obviously no pun or joke intended). It just takes a few weeks to get used to. Immediately after surgery it is very difficult, of course, because you have lived your entire life with both sides working. Sorry I could not help you with that question.
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Bobbibl,
Sorry to hear that you have a 4 cm AN. I know how panic you are. I just been told that I have a 2 cm AN. And I am also having the question on where should i go for surgery.
Hruss,
you mentioned that you are from Europe, that means you don't have the state insurance to cover your surgery cost. So, how much do you have to pay at time you did your surgery at house. Because I am in a similar situation here, I may not have insurance couverage. Many people suggested that House is a good center to do this kind of surgery, but I am not sure whether there is any way i could afford it. So, hruss, do you have an idea on how much they will charge for a foreigner patient?
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Hi,
I was also diagnosed at 24 with a huge AN, so I understand how shocking this must be to you! I also had a perfect hearing in the affected ear. Like SteveK said, when the tumor is this large, the main goal is survival. I would also like to add that a very close second goal is preservation of your quality of life, including your facial nerve. In 20 years time between my original tumor and its regrowth, I can tell you that neurosurgeons made a remarkable progress in preserving a patient's quality of life and the facial nerve. Hearing nerve can now be saved for small tumors ( approximately less than 1 cm ) about half of the time. It is obviously also progress but unfortunately not as rapid. Another option is tumor debulking during surgery followed by radiation of the rest. This potentially allows for hearing preservation even in large tumors but the question remains of what radiation will do over a long term (20+ years) in such a young person. There are many differing opinions on the matter.
NY has many great and experienced neurosurgeons, so you are very lucky. Another place NJ Aners (Lori has a great idea of renaming NJ as AN state!) go to is California. House Ear Clinic (HEI) is one famous place and they also provide free phone consultations. SBI is expensive but they provide endoscopic version and they also can deal with big tumors.
No matter who will do your surgery, make sure you have complete confidence in your surgeon and also ask for references of people who had the same size tumor as you and had a great outcome in that surgeon's hands. Small tumors do not count for you. Medicine is so advanced nowadays that any big city has an experienced neurosurgeon who can remove a small tumor without any consequences and preserve one's hearing. The bigger the tumor, the trickier it gets. Experience matters! The rest of your life can be on the line, so ask questions and ask for references of the similar situation to yours!
Eve
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Hi, Bobbibl,
I am also a New Jersey resident and had AN surgery (translab) at House in Los Angeles this past January. There are certainly many qualified surgeons in the New York area if you wish to stay local. My local otolaryngologist (in Monmouth County) had some training at House a number of years ago and recommended them highly ... this influenced my decision, but as many other posters will attest, good outcomes are not exclusive to House. My AN was considerably smaller than yours (but had already zapped most of my hearing -- hence the translab) and I was one of the fortunate patients for whom fatigue was absolutely the only post-surgery problem experienced. At 6 months post-surgery I felt almost totally "back to normal." I had the BAHA implant at the same time as my surgery and have been pleased with the results. Best wishes to you as you consider your options and undergo treatment!
JerseyGirl 2
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Hi Bobbibl - Sorry that you had the need to find this forum.... but the support you'll get here is tremendous. Welcome.
I live in NY, and recently had surgery with Drs. Roland and Golfinos at NYU. As Debbi mentioned earlier, Dr. Golfinos also does Gammaknife there, so I felt like I got an objective opinion about my treatment options from him.
There are several surgeons in NY that you might want to speak with - Dr. Selesnick is at Weill Cornell, and Dr. Post is at Mt Sinai.
Feel free to contact me if you want to chat.
Mary
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Yes bobbi you will be offered the cross aid as well, thats what i have, my an was over 4.5cms, i am having a baha trial next week
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I live in NY too and got mines removed last year
I don't reccommend Dr Selesnick, he didnt show up with Dr Steig for my surgery as previously agreed..
NY Presbyterian &Cornell are surgered into one. When I was first admitted I heard great reviews of both drs. being top notch, was excited when they both agreed to perform my surgery,despite the long waiting list. They are both very charming and easy to talk to. It was shocking to find out months later that only Dr Steig ran the show and Dr Stelesnick wasnt involved.
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Hi, Bobbi:
Sorry to hear you have had to join our little club, but welcome.
The most common surgeries for a 4cm AN are translabyrinthine and retrosigmoid. Translabyrinthine approach (entering the skull through the ear canal) removes all hearing structures and the vestibular (balance) nerve on the affected side, so it is a given that you would lose 100% of your hearing on that side should you have this surgical approach performed on your AN. Retrosigmoid approach (entering the skull behind the ear) often preserves the hearing and balance nerves anatomically but the function of those nerves often suffers with this approach in removing a large tumor. So, you would probably end up losing your hearing anyway with a retrosigmoid approach. (Dr. Brackmann, famous brain surgeon at the House Ear Clinic in L.A., told me that a retrosigmoid approach to removing my then-1.9cm AN had an "almost non-existent chance of preserving any useful hearing" on the affected side.)
Endoscopic surgery is relatively new. There are concerns in the medical community over the risk of bleeding with endoscopic surgery. That is, important blood vessels have a higher chance of being ruptured, or so the thinking goes.
As I see it, you have two good choices if hearing preservation is a primary goal of yours: 1. tumor debulking (removing most but not all of the tumor surgically, so as not to scrape and therefore damage any important nerves such as the hearing nerve but more importantly the facial nerve), followed by radiosurgery (GammaKnife, CyberKnife or FSR); and 2. foregoing surgical resection and having FSR (fractionated stereotactic radiosurgery) performed by a medical facility that will agree to treat a large/4cm tumor with radiation. The only facility I know of that will treat ANs larger than 3 cm with radiation is Staten Island Hospital (SIH).
It's a difficult choice you face, especially considering you are so young and your hearing is still good. A couple of helpful things to know: first, the risk that radiosurgery will cause malignancy/cancer are deemed to be virtually no greater than the risk for the general population. Second, as Dr. Chang (esteemed Stanford University Medical Center neurosurgeon) told me, the primary goals for tumor treatment are the following, in descending order of importance:
1. tumor control (keeping it from growing, so it doesn't kill you)
2. facial-nerve function preservation (facial paralysis is deemed to be one of the most serious impacts on quality of life)
3. preservation of balance function (vertigo, oscillopsia and/or disequilibrium also have a significant impact on one's quality of life)
4. hearing preservation
So, you can see that hearing preservation is down the list a ways. Not to diminish your rightful concern over preserving your hearing, of course. But my point is that the two options I put forth above for potential hearing preservation should be considered in context of the larger picture.
Every treatment approach carries substantial risk. It sucks that there is no silver bullet. But everyone on this forum has been here, and the vast majority of us have come out okay -- if not unscathed -- after treatment. We're here to help.
Best wishes,
Tumbleweed
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Welcome to our world. I had a 4 cm AN and had it removed in Cleveland OH. My hearing was near perfect also before surgery. I did lose my hearing but got the BAHA implant. It is not my original hearing but it helps tremendously. Good luck on your journey.
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Endoscopic surgery is relatively new. There are concerns in the medical community over the risk of bleeding with endoscopic surgery. That is, important blood vessels have a higher chance of being ruptured, or so the thinking goes.
When I was doctor shopping this was one of the questions I posed to the folks at the Skull Base Institute (and to those that use the traditional method). With the advance of the tools of the trade, they are able to cut and cauterize at the same time, so this is pretty much a minor and very rare occurance.
Given your age, I would suggest you explore ALL options regarding traditional and endoscopic methods of removal. Don't rush into anything.
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I concur with Chopper -- explore all options. I certainly didn't mean to suggest anyone rule out endoscopic (or any other approach to) surgery. It's difficult to give a lot of information here in condensed form (to avoid writing a book with each post!) without generalizing. Hopefully I've provided a broad overview that can help serve as a starting point in one's research for the best treatment course for them personally.
Best wishes,
Tumbleweed
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Doctor shopping is a VBD--very big deal! You can get all kinds of referrals from the site. I truly think everybody knows everybody. I haven't chosen a dr. yet, but I have to tell you that you will get more than your money's worth by getting a consultation w/House. A Dr. Wilkinson was the one who contacted me, and I have talked to him at least four times. He called me last Sat. night just to check on how I was doing, and said that when he was at a conference recently he was dr. shopping for a dr. in Dallas for me because he knows I live in Houston. I think that is above and beyond the call of duty for a free phone consult!
Maggie
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Dr. Wilkinson is, I believe, the newest member of the House surgery staff. When I had my surgery there this past January he was completing his Clinical Fellowship, and my surgical consultant said that he was going to join the staff shortly thereafter. He assisted with my surgery and was really a caring, compassionate individual. I'm not surprised that he's been keeping in touch with Maggie and checking on her progress.
JerseyGirl2
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Hi Bobbi -
Wow -- am I ever late in coming to this thread. Welcome to our forum -- I'm sorry that you have an AN, especially such a large one. In reading all the posts in this thread, I see that Debbi mentioned me and my wonderful doc (thanks Debbi!) I am now 12+ weeks post op and doing great! Although I did lose my hearing in my AN ear, I was originally scheduled for middle fossa. I ended up having the translab approach because of two sudden hearing drops that left me practically SSD anyway.
I would definitely recommend Dr. Choe if you are still shopping for a doctor. He usually works with Dr. Joshua Bederson, chairman of Neurosurgery at Mt. Sinai. Dr. Bederson does not accept insurance but will usually accept out-of-network coverage as payment. Since I didn't have out-of-network coverage, he recommended a colleague, Dr. Chung Chen, a truly lovely man and brilliiant surgeon according to Dr. Choe. As you can see, I can't argue since I had a great outcome.
Best wishes,
Wendy
P.S. Don't know if you noticed it under AN community, but we are trying to get some people together for lunch in NYC November 15 -- try to come if you can. PM me for details if you are interested.
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Had about as a good an outcome as could be expected. No facial or balance issues post surgery. Apparently, it had been growing for so long that my body had already compensated with the other side. Was actually walking all over the hospital by day 3. Did end up with SSD though so trying to get used to that. Also do have a continuous "clogged" feeling in the AN ear. Doctors tell me that should dissipate over the next couple months.
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Hi Bobbi,
Congratulations on a wonderful surgical outcome! My doc also assured me that the feeling of fullness in my hear would dissapate in a couple of months when the internal swelling went down and I am starting to feel that (I'm 13 weeks post-op today). Wishing you continued good healing and wellness.
Wendy
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Hi, Bobbi :)
Thanks for the update. It sounds like you are going very well - wonderful outcome for such a large AN ;D
If you find that you don't adjust well to being SSD, consider the BAHA, it works wonders.
Jan
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Hey Bobbi!
Congratulations on coming through so well. I'm sorry about your hearing but I know you'll find a way to deal with it. So happy you are well!
Marci
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Starting to run again (with no balance issues luckily) which is good news to me but am getting extremely annoyed with the SSD. I don't think about it all the time but others that have SSD keep telling me it'll get better. Not close to what it was but better then it is now. I'm only about a month post-op but will the hearing get any better then it is now when I'm in noisy places or will I just get used to it? It seems like besides when I'm home I always seem to be in noisy places (work, social etc).
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Bobbibl,
That is great news that you can run without balance issues.
Some days are more frustrating than others regarding hearing. I know I have some hearing on my AN side and noisy places frustrate me at times. It is like Charlie Brown's teacher...WAH. Wah.Wah...
Specifically, I cannot speak to SSD and your question, but I know others will.
All the best,
Kate