ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: another NY postie on June 24, 2009, 03:43:13 pm
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This is my first post. I was just diagnosed two weeks ago with a 5mm AN. I have some hearing loss already, fullness, on and off infrequent ringing, and some facial tingling. I think this is due to how deep it is in my canal.
I have seen three NYC specialist so far: Dr Post/Mt. Sinai, Dr. Choe/Mt. Sinai, and Dr. Selesnick/Cornell. My tumor is small by AN standards but deep in canal. Dr. Post gave me 70% of hearing preservation and Dr. Selesnick said 50%. I have appt with Golfinos/Roland also and I am planning on consulting House.
I have two questions. First, anyone who has had surgery for a small AN, what made you choose surgery over watch/wait? Did you preserve hearing?
Second, I just read the following:
The middle fossa approach is used for tumors typically less than 2 cm in greatest dimension, where hearing conservation is to be attempted. This approach has the advantage over the retrosigmoid approach in its direct access to the lateral end of the internal auditory canal. Multiple reports have shown that the retrosigmoid approach cannot reach the lateral end of the internal auditory canal without violating the posterior semicircular canal, and hence destroying the hearing.
I am assuming that mine is in the lateral end since they all told me it was deep in canal (something I will verify this week at next consult). East coast/NYC seem to say retrosigmoid so this now has me wondering. Anyone with a small tumor that is deep in canal?
Thanks!
PS. I have been reading your forums/chats since I first googled what in the world an acoustic neuroma was. It has been such a resource for me.
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Hi. I had a small 9mm AN in my IAC, and I chose surgery for several reasons. I wanted it gone. I wanted to preserve my hearing. I wanted it out while it was small and to hopefully decrease any complications from a larger AN.
I had a mid-fossa. Dr. Gantz said that was the best approach for me and for saving my hearing. Had my surgery 10 months ago. No complications. Hearing was saved (although I do have decreased hearing in that ear, I did before the surgery, too).
Good luck with your research. Any questions, feel free to PM. :)
Cathy
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Welcome. ;)
I would ask the doctors about this when you do further consultations. However, if Post and Selesnick are quoting fairly high hearing retention figures (which IMHO tend to be slightly conservative because the doctors are conservative), then I think they must be fairly confident they can get to it using retro. I don't know much about mid fossa, but in one of my consultations I seem to recall that it raises the probability of hearing retrention, but also raises the risk of facial problems. Please verify that though.
Wayne
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Hi
So sorry that you have to have this diagnosis. Welcome to the site.
I am in NJ and am having surgery next week with Dr Roland/Golfinos for a small 1.4cm Intracanicular AN. MY tumor is located close to the cochlea however my speech discrimination is still 92% so I have pretty good hearing. Dr. Roland suggested mid-fossa to try and preserve my hearing. If my speech discrimination was less than 70% he would not recommend it and would have waited till my hearing was gone or my AN grew significantly and then preformed translab. He gave me a 50/50 chance of saving my hearing. From my research it seems that your hearing will stay the same following surgery, of course allowing for normal decline (every person gets). Facial Nerve is an issue with middle-fossa 5% risk of permanent damage, 15% temporary but does allow a good view and a better chance of hearing preservation.
IMO I think it is best to go with the surgery your surgeon feels most comfortable performing whether retro or middle fossa. I believe it is their skill which will ultimately determine the outcome and of course how sticky your AN is to your nerves. I will post my outcome for hearing preservation and facial nerve after surgery so you have more data to support your research.
Best wishes for success in your research and as you determine your next step.
Darlene
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Thanks! I think that surgeons do what they know well and have success with - so that is probably why I am not seeing to much Middle Fosa on East coast. I have an appt with Roland on the 17th. Dr. Post said he doesn't like Middle Fosa because it puts the facial nerve between the surgeon and the tumor. So I don't know if that means that if I had Middle Fosa, I would have a higher risk of facial nerve damage. It seems like every option has big Pros and big Cons to it. Makes me wonder how you ever make an informed choice - it is all a gamble.
What is IMHO and IMO?
Thanks!
Cheryl
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Cheryl .....
Only because I have kids who text all of the time ::) do I know what these mean ...... IMHO, in my humble opinion and IMO, in my opinion. :-*
Clarice
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too funny, Clarice....we were just talking about what a neophyte I m with texting...I have a 13 yr old too! I just started texting two weeks ago because she doesn't seem to answer the cell! I thought LOL meant lots of love for quite some time :)
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Cheryl -
you should schedule a consultation with Drs. Roland & Golfinos in NYC.
Jan
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I happened to have scheduled them today. They seem to be a longer wait but I am seeing one on the 17th and one on the 28th. I am glad that they do middle fosa approach too...I was beginning to think that only CA did that.
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Cheryl,
In my opionion, you are right, ulitmately it is a gamble but you have to weigh the risks for your particular circumstance. In my research for me, Middle Fossa- slightly higher facial nerve risk, retro- little higher incidence of headaches, translab- supposedly an easier surgery technically but you lose your hearing and a tiny bit higher chance of CSF leak than with middle fossa, conversely middle fossa- better hearing preservation, retro- less chance of facial nerve damage, translab-less intricate surgery- most commonly used. Please keep in mind these are my interpertations of the research. I decided to go for the gamble and try for the trifecta- removal of AN, no facial nerve damage and hearing preservation. So I elected middle fossa with doctors that came highly recommended from many areas including this site. My thoughts are as long as you choose an experienced person and you are comfortable with them and their approach that is the best you can do. It also doesn't hurt if they take your insurance! :) There are no guarantees and until they get inside your head and see how the AN has attached itself to your nerve the statistics are just that, statistics. Those statistics are very different when it is your reality.
You are doing a great job in your research, keep going till you feel comfortable! Good luck, Darlene
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Hi Cheryl and welcome. Glad you found us and glad to hear that the forums are becoming a terrific resource for you.
Like you and Cathy (DogLover), mine was also, at time of diagnosis, 9mm deep in the IAC with just a hint poking out at the CP Angle Region. I opted for radio-surgery (radiation) for mine, with the key point of my radio research being... was there enough room in the IAC for the growth to swell, which can occur during post-radiation. My docs told me yes... and now, over 3 yrs later (post-radio), the AN is now a "done deal".
When I was researching surgical and radio treatment options, my brain surgeon, when noting to her about Mid-Fossa, actually cringed when she heard me say it. Now, it has worked out for many... and has not. I have to also agree with you about the NE Region "poo-pooing" Mid-Fossa surgical approach and I have no clue why. I did not ask my dr to elaborate on her attitude about it, since our conversation then shifted to radio-treatments.
The teams you are seeing in NYC are very reputable and you are doing everything right... we are here to help in any way that we can and again, send you "Welcome" to the forums.
Hang tough!
Phyl
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I happened to have scheduled them today. They seem to be a longer wait but I am seeing one on the 17th and one on the 28th.
Glad to hear it. IMO, they are among the best in your area, which is probably why there was a longer wait to see them.
Lots of satisifed AN patients.
Hope your appointment goes well.
Jan
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The good news is that if you allow Post to do Retro, he is still giving you a 70% chance of hearing retention. That's the probability he gave me and I came out of it with about 90% of my hearing. I can't even notice the difference except when I use a phone. The bad ear is very slightly distorted during phone use. I guess I was very very lucky, but it can happen.
When I saw Galfinos and he mentioned Mid Fossa approach and the extra risk of facial nerve damage. I went for the retro. But everyone has to make that risk reward judgement for themselves.
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In general chances of preserving hearing with retrosigmoid are 50/50. 70 seems kinds of high.
Just remember that no doctor can guarantee you anything 100%.
Jan
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This is my first post too.
I had surgery to remove a 5mm AN located in the IAC on June 30, 2009 in LA at the House Ear Clinic.
I am originally from NY and now live in TX.
I opted for surgery to get this thing out of my head so i would not have to worry about it anymore.
My surgery was a great success. I opted for Middle Fossa surgery because it is less intrusive than retro.
It offered me an option to possibly retain some hearing as well.
The results were awesome! The entire tumor has been removed. I have balance issues currently but they are getting better every day. I was able to save some hearing which is great because i was prepared to lose it all. I had some headaches for a couple of weeks. I am in physical therapy.
I learned a lot from the ANA site and from attending the ANA support group in Dallas.
All said, it was 5 months almost to the day from the time i found out about the tumor until its removal.
I feel blessed every day that i am upright.
My doctor is Dr. Brackmann. I chose him because he has performed many hundreds of these procedures while other doctors that i spoke to had only done a few. The support group in Dallas was insistant on getting someone with major amounts of experience.
I am home now, doing physical therapy twice a week and expect to be able to return to work towards the end of August.
Balance is the biggest issue with me right now. My right eye no longer tears but it stays wet enough that i don't need eye drops at all.
Let me know if there is any other information that i can offer you.
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Patrick,
I just sent you an PM. I can't believe you posted this today! I just booked surgery for Sept 23 with Brackmann this morning and have felt full on anxiety all day. Not about Brackmann, just about surgery and the unknown. I have read so many times that once you make a decision,there is a huge relief, but I haven't felt it yet. I have another auditory test on Friday. I guess even though I scheduled it, I am not 100% there yet in terms of decision...so I amso glad to hear your good news. Thanks!
Cheryl
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Hey, somebody has some news here! Congratulations Cheryl on making a date with Dr. Brackmann. You may still find yourself wondering if it is the right thing to do, but if you keep coming back to it, you will know it is. Give it a couple of days to sink in.
Steve
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Congrats on making the decision, Cheryl. See wise choice!
You have an AN buddy who will be able to answer lots of questions-Patrick.
Keep posting concerns/angst. We are here for you.
Maureen
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cheryl, congrats! Great hands at HEI and will be cheering you on... and yes... you will feel the monkey off your back for the decision-making process... it will happen :)
Phyl
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Hey, Cheryl! My congrats also on making your decision and setting a date! I had surgery there (HEI) in November with Friedman - great experience...if one can call such surgery a great experience :D Feel free to PM me with any questions you may have about the logistics of having surgery on the other side of the country!
Best to you,
Cindy
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Thanks to everyone for the support! I haven't even told my family yet (excluding my husband and kids, of course!:) I am waiting for it to feel real which it hasn't yet. I am wondering if there is a small part of me that is still in deep denial about this. I have this hearing test on Friday because I think it has gotten worse but I don't even know what that will tell me in terms of this decision. I want to go for it for the hearing preservation but if that was an impossible goal, I would just live with it until hearing goes and then have it out. Since there are no guarantees and no crystal balls telling me the future, I keep questioning myself. I am taking Patrick's post of the blue as I sign that I am on the right path!
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Cheryl ~
Please accept my somewhat belated congratulations on making a treatment decision! Although you may not feel the oft-mentioned emotional relief yet, you probably will, soon. Dealing with the unknown is always stressful, so your feelings are normal and natural. The internal denial is also quite common. I went through my whole diagnosis/pre-testing/surgery & hospitalization as if it were happening to someone else. Once I was out of the hospital and feeling better, I quickly 're-connected' with my life and was very anxious to regain normalcy, which I did, within a few months. If you have full confidence in your doctor(s) and know this has to be done, you should find emotional solace before too long. Besides, you'll have a large cheering section (here) rooting for you! :)
Jim
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Cheryl,
Congratulations on your decision to have surgery at House! It's an amazing place (and this is not intended to discredit any of the other wonderful AN surgeons in the country). There are quite a few East-Coasters on this forum who've made the journey out to House -- I live in New Jersey and had my trans-lab and BAHA implant procedures there in January 2008 -- and if you search on this forum ("House" and "Seton Hall" are good terms to use) you'll find many, many posts of House patients. You can also click on posters' names, go to their profiles and read through their postings.
Seton Hall is adajcent to both St. Vincent's (the hospital where you'll have your surgery) and House Ear Clinic/Institute -- it's a good place to stay both before and after your surgery. The typical post-surgery stay in L.A. (before you're cleared to fly back home) is about ten days -- some patients stay a bit longer, a few leave a little earlier, but you can rest assured that you won't be released until your doctors feel that you're ready.
If you usually fly coach, you might think about upgrading to first-class for your cross-country flight back home -- my husband and I did that, and the extra space and more comfortable surroundings were much appreciated. Another benefit was not having to wait on line at LAX's first-class security check-in.
Best wishes as your plans proceed and your surgery date draws closer!
Catherine (JerseyGirl 2)
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This is my first post too.
Hi Patrick,
Just wanted to welcome you to the forum. I saw that you also found Lilan on another thread, just missing her at House.
Apparently you have unknowingly helped Cheryl to make the call. Since it is Brackmann at House, you are in safe territory. ;)
Steve
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I want to thank everyone for all their kind words and pms...it really helps soothe the angst...I did show some additional loss of hearing loss in my test today...mostly between 3000-4000 hrz...anyway, helps me with my decision since I am going downhill with hearing...I am off for a week to hopefully foget about this thing (yeah, good luck, right) ;D
Cheryl
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Steve - Thanks for the welcome.
Cheryl - After surgery, your hearing organs will be full of blood from the surgery, at least mine was.
It felt like i had lost all hearing, felt very full.
I was able to hear a dial tone on the phone though. I think that is the favorite test of the doctors.
It takes a few weeks for your body to re-absorb the blood.
It sounded like crickets at first and gradually the hearing came back.
I know you will have a good experience (well - you know what i mean) at House.
Good luck with it.
Let us know how it all goes.
Patrick
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Cheryl,
Congratulations on your decision. Sorry I noticed a few days late, but I've been very busy and haven't checked the forum lately.
May I ask what the deciding factors were in choosing Brackman given that you had seen so many outstanding surgeons on the east coast?
Wayne
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In general chances of preserving hearing with retrosigmoid are 50/50. 70 seems kinds of high.
Just remember that no doctor can guarantee you anything 100%.
Jan
Jan,
When I first had my consultations both Dr. Post and Dr. Galfinos they both said I had about a 50-50 chance (so did Dr Smouha). However, Post mentioned that he could give me a more accurate assessment after seeing the result of some additional hearing tests that looked at my hearing nerve. I mentioned that to Galfinos and he said he generally doesn't bother doing that test prior to surgery because he evaluates the nerve during surgery. I had the test done with Dr. Smouha anyway and then Post upgraded my chances to 70%. I don't know exactly what he was looking for, but Galfinos seemed to agree that my chances could be as high as 70% "depending" on condition of the nerve.
In the end, I went with Post because my ENT had originally recommended him and his record for hearing preservation using Retro is unequaled. Retro seemed like the best option for me. Of course his record could partially be the result of the cases he takes (maybe only high probability cases????), but since he was willing to operate on me, I felt like I had an above average chance. He exceeded my hopes.
Now if I could just get rid of those "balance waves" that go through my head whenever I'm in motion.... ::) It's tough almost never feeling normal, but I'm sure you all already know that. ;)
Wayne
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Cheryl,
Sorry I'm a little late in coming to this thread. My hubby's on vacation and we've been on the go. Congratulations on making your decision, in my opinion it's the hardest part of this journey. the next six weeks will fly by. Try to keep your mind occupied with things other than surgery -- of course I understand your feeling that you could still change your mind. I did it a couple of times myself but ultimately decided surgery was the right chioce for me and it was. Although I am SSD and have a slight balance problem, it is still getting better and may in part be from my knee problems. Hang in there!
Wendy
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I just got back from Michigan - lovely state - I had no idea! :D Driving through PA, I had my ear pop! It was amazing! Funny how such a little thing can be so thrilling now. I got the full feeling back within 24 hours but not as full as it had been since March. I was disappointed that it didn't pop again on the way home. I told my husband we may have to keep driving through the Poconos just to try to pop it again!
Anyhow, for those of you who reached out as House alumni - I am calling this week for those tidbits and packing list.
Wayne, to answer your question, I concluded that middle fosa was best for me because of location of AN. I couldn't find anyone that did middle fosa enough in NYC for my comfort level (Roland does 10-15 a year, Post not at all, etc) - since it puts the facial nerve at risk , I wanted someone who did a lot. Brackmann does 60 middle fosas a year so I decided to go for that. If I had retro or trans, I would have stayed local.
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Welcome back, Cheryl! I look forward to talking to you when you're settled and ready...
Cindy
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I, too, want to jump in late and wish you the best in your trip to LA. I went to House in May and things worked out great. Feel free to ask questions! Alicia
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Hello,
I am 25 and also have a AN deep in my canal- my hearing is mostly gone on my right side and my balance is awful. I met with Dr. Golfinos and Dr. Roland at NYU Medical Center. They both recommended the Translab. Approach, because my hearing is not worth saving. I have no scheduled the appointment yet, and am INCREDIBLY nervous. I was very happy to find this forum and see how many people have had successful surgeries with the two doctors at Langone Med. Center. If anyone has gone through the Translab. Approch at NYU I'd love to hear from you and see how eveything went.
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Hi, Stef and welcome to the forum.
It's normal to be incredibly nervous when diagnosed with an acoustic neuroma. You are in excellent hands with Drs. Roland & Golfinos - they have a stellar reputation.
Jan
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Welcome, Stef .....
You have come to the right place for loads of support as you walk through all of the stages of having an acoustic neuroma. We are here not only to support and answer any and all questions ..... but also to laugh and cry with you along the way.
As Jan has said, most of us were really thrown by the initial diagnosis of AN ..... it sort of turns one's world upside down at first, so being nervous is a completely normal reaction. Hang in there and ask any and all questions, none are ever silly or stupid.
Thoughts and prayers.
Clarice
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HI, Stef...I am the one who originally started this thread as I, too, had a small AN deep in canal - as far back as you can apparently can get. I did consult with Roland and Golfinos and they were high on my list. I ultimately went out to Dr. Brackmann at House Ear Institute for Middle Fosa as I hoped to retain my hearing via this surgical approach and I still had 85% on that side. I didn't preserve it, however - the AN was stuck to this artery that supplies blood in canal. ROland and GOlfinos have an excellent reputation and you will find that many have used them on this forum. Good luck on your decision making process...if I had lost most of my hearing, I probably would have gone translab, too.
Cheryl