ANA Discussion Forum
General Category => AN Issues => Topic started by: Amplified2000 on February 16, 2010, 05:22:28 pm
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Hello everyone,
I'll keep this as short and sweet as possible, here is my dilemma..
I have been seeking treatment with Dr. Richard Wiet of the Chicago Ear Institute and after much testing and consultation we decided on surgery to remove my AN.. scheduled for February 24th.
-Dr. Wiet told me that due to the location of my tumor there was almost no chance of hearing preservation so we decided on a Translab approach
-As a matter of due diligence I sent my latest MRI to House Ear Institute for a phone consultation
-I just spoke with Dr. Friedman from HEI and prior to discussing my current Dr. or my surgical plans he suggested surgery via Mid-Fossa and gave a "60 percent or better" chance of hearing preservation via Mid-Fossa
-After I told Dr. Friedman about my current Dr. and our plans he was rather surprised.. and he claims to know Dr. Wiet pretty well
-Dr. Wiet is out of town this week and is not scheduled to return until Monday the 22nd.. 2 days before my surgery is scheduled to be done.
Dr. Friedman has thrown my world into upheaval.. I had made my peace with being SSD and had a plan to get this thing out of my head but now I am seriously questioning the treatment plan I currently have. Dr. Wiet has done a lot of testing with me, spent a lot of time speaking with me and I truly believe he has my best interests at heart and a solid reasoning behind the treatment plan he recommended.. but now the idea of possibly saving my hearing has me wondering what the best course of action is and Dr. Wiet's being unavailable is making it very difficult for me. I am currently off work on FML/STD pending my surgery next week, if I cancel with Dr. Wiet and schedule with HEI there could be a delay in my treatment and possibly cause all sorts of issues with my job and my financial well being.. but the possibility of saving my hearing weighs in heavy..
I guess I am wondering what you all would do in my situation and for those of you with experience with HEI, how reliable is the information Dr. Friedman has given me based off of a quick look at my MRI?
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Hi there,
Have you explored radiation treatment as an option?
there are plenty of posts on that in this forum.
Apart from the medical side of things (removal v's radiation), as per your financial dilemna, surgery either translab or middle fossa will mean about a 4-6 weeks off work scenario. Thats without complications. Radiation treatment either gammaknife (single burst) or Cyberknife (daily bursts over around 5-7 days) allows you to work on that day so no time off.
I guess your first issue is - can i emotionally put up with an an in your head that stops growing and possibly shrinks or surgery where it is removed.
Without going into song and dance on the plusses and minusses of both options (which have been well documented on this forum) you should have the procedure performed by whoever you are comfortable with. make sure you ask the key questions of the surgeon re key stats such as mortality rates, hearing preservation, CSF leaks, post surgery issues such as headaches etc. IMPORTANT that you ask them what their stats are not the "industry average". If radiation, ask stats like have any turned malignant, post radiation issues such as headaches etc
Don't rush in until you have explored all the options
Laz
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Here's the deal... I did a quick search of the forum for "Wiet" because I've only heard his name but have no other connection to him or his practice. Of the few that I came up with that have actually used Dr. Wiet for their surgery, ALL of them had Translab done. That tells me that he may tend to favor that approach over retrosigmoid or middle fossa. Just like with Friedman at HEI probably tends to favor the middle fossa approach.
Sugeons tend to favor the approach that they are most comfortable with and hence will get results to hearing preservation accordingly.
Both of those doctors have wonderful reputations and I've heard good things about both of them.. So, if hearing preservation is of importance to you, then I'd lean toward HEI because you have a better shot of it than a 0% shot with translab. If it's not of significant importance to you, then stick with your original plan of translab with Dr. Wiet.
Keep in mind that whatever hearing you have going into treatment is usually the best you can hope for coming out of treatment.. So, if you currently have moderate to severe hearing loss, then that's the MOST you can hope for coming out of surgery. The definition the doctor uses for "preservation" becomes very important because what's useable hearing to you may be very different to him..
Hope that helps...
Regards,
Brian
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Larry - I have looked in to radiation as Dr. Wiet also does GK but decided that it was not for me, in my short conversation with Dr. Friedman he advised against it for many of the same reasons as Dr. Wiet as well as my own conclusions.
Pooter - I know that you're right about Dr's favoring certain procedures because of what is comfortable to them..
I guess my questions now are, do I wait until Dr. Wiet is back in town to discuss this with him (2 days prior to scheduled surgery)? Time is a motivating factor because I am already on STD/FML because of the scheduled surgery.. if I have surgery later I will risk exhausting my leave and causing financial hardship on my family.. I do not want to go bankrupt in the process of getting this treated. Do I book now with HEI because all things being equal I would rather NOT be deaf if possible.. hearing preservation wasn't a primary concern because I had been told it wasn't possible.. now that the card is in play it is at the top of my list.. my hearing is actually pretty good right now (some high frequency loss and about 90% word recognition).
UGH!!! I was so calm and collected because I had a plan.. now I'm in shambles again!
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I wrestled with surgery options and actually booked surgery twice with two different surgeons. I am finally in the que for Dr. Akagami in BC. Not because there is a remote chance of saving my hearing but because he gave me a 97-98% chance of preserving the anatomy and function of my facial nerve.
I've been told by he and his partner Dr. Westerberg to expect complete deafness after the surgery, and that even if hearing is preserved, it may not be useful hearing. I think that might be help you in your decision makin. Just because you can hear after surgery does not mean it will be useful. You may retain some ability to detect sound, and tone, but have no speech discrimination etc left over.
For me Personally, I did not base this decision on whether or not I was going to retain my hearing. I based it on the best possible outcome as a single sided deaf person. My opinion is that those who retain their hearing are the exception to the norm.
I hope that helps, even if just a little. I'm sorry you find yourself in this position, but you're not alone in your frustration when making this most difficult decision. All the best!
Nikki
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Kevin -
Dr. Richard Wiet is one of the best known doctors who treat ANs in the state of Illinois and he's been doing surgeries for many, many years. He's been recognized by his peers as one of the top doctors in Chicago several times, most recently in 2010. He performed the first cochlear implant in the state years ago. He has a stellar reputation, is widely known and liked by his fellow MDs, and in addition, he's a member of the ANA's Medical Advisory Board. He also was a huge contributor to the 2009 ANA Symposium in Chicago and he teachs @ Northwestern University Medical School.
Despite Pooter's suggestion, Dr. Wiet does perform surgery using the mid-fossa approach. I was told this personally a few months ago by my own doctor, Robert Battista, who is one of Dr. Wiet's medical partners.
Dr. Friedman and Dr. Wiet do know each other quite well.
IMO you should wait until Dr. Wiet returns to find out what his reasoning is for wanting to do the translab approach rather than mid-fossa. You mention that you had extensive testing and I have a feeling that has some bearing on his decision. In addition, I know you had another surgery which may be a factor. From what I personally know of Dr. Wiet, he does not hesitate to refer patients to his colleagues if he feels that he's not the best doctor to treat them - which speaks volumes, in my opinion.
Is Dr. Friedman's suggestion based strictly on looking at your MRI? or did he consider your history and test results? From what I know of him, he's an excellent doctor - the same caliber as Richard Wiet - but I'm thinking that there may be things about your case he doesn't know.
Just my two cents for what it's worth.
Jan
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Hello Amp,
That's a tough one. Looks like you have two very good Docs giving you two different options. I would say that if you threw another highly respected Doc in the mix they would recommend Retrosigmoid!
It sounds as if you have a good relationship with Dr. Wiet. That certainly means a lot.
IMO hearing preservation statistics can be misleading at times. If you really want to save as much hearing as possible, I would find out more as to why you cannot be treated with GK. This would give you the best chance at preservation, albeit not guaranteed.
Bryan
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I had middle fossa surgery in November with Dr. Friedman as my doctor. My hearing was preserved and I had zero facial paralysis. He is very, very confident, and did tell me that Middle Fossa is his specialty--the one he enjoys doing the most. He also has told me on more than one occasion how fortunate I am to have such a great outcome, and that it is rare. If you reschedule your life and move to Dr. Friedman and still lose your hearing, you will be disappointed, but you won't have regrets for having tried. Good luck to you in your decision making!
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Sounds like in your case, you'll get a different opinion with almost every other doctor you see...and your story sounds really similar to mine. I live in the Phoenix AZ area and went to two different dr's, both said translab. HEI (Dr. Brackmann) said Middle Fossa. So I went with MF, knowing that I could still lose my hearing. One of those nothing to lose but everything to gain kind of things. As luck turned out, I did keep my hearing, about the same before I went in. Of course, as you probably know, all kinds of things have to happen just right for that to be. So go with your gut feeling and know that is the best choice for you. Good luck, keep us posted!
Jay
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For the record, I never said that Dr. Wiet did only translab surgeries.. Only that my search of the forum led me to believe he may favor that approach. And also for the record, I said that both Drs had stellar reputations and that I had only heard good things about them.
I think if Dr Wiet suggested translab, he did so for a reason. Personally, I would wait until he returns to town and discuss the situation with him to see if middle fossa was warranted given your particular case. He'll tell you if he thinks it is or why it's not called for in this case. He may have suggested translab because it gave him a better view given that you didn't express any interest in hearing preservation... But, now you are, so his answer may change. Who knows? Talk to him about it as he's familiar with your case..
Regards,
Brian
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Kevin ~
You certainly do have a dilemma. Because you asked for advice, I'll offer...Brian's. Actually he 'beat' me to what I would have answered: that Dr. Wiet should be consulted before you throw your plans out the window and opt for HEI and the ensuing financial chaos you indicated that move could cause.
You also have to consider that if you changed plans now, days away from your scheduled surgery, the Middle Fossa procedure was performed at HEI and your hearing was not preserved or other unwelcome complications arose, you would, no doubt, be extremely upset...with yourself, for being too easily swayed and not making a firm decision.
Nothing wrong with seeking the best possible outcome and no one will argue that preserving your good hearing in one ear isn't a reasonable priority. I just don't want you to make a rash move that you may ultimately regret. Unless you have some hitherto unmentioned reservation about Dr. Wiet and his plan for Translab surgery to remove your AN, I would suggest that you wait until Monday (22nd) and consult him as to why he is using the Traslab approach and that you're now conflicted. Once he explains the rationale for his decision to use the Translab surgical procedure he'll probably tell you that it's your call - and he'll be correct. At some point, you just have to take a calculated risk and choose a doctor, facility and procedure and then hope (and pray) for the best possible outcome. Ultimately, all AN patients do that, whether they choose surgery, radiation, both or just observation. It's a risk but one you absolutely must feel comfortable with taking or your ability to make a choice will be paralyzed - and that isn't an option.
We'll collectively support whatever decision you make so please let us know what you decide. Thanks.
Jim
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For the record, I never said that Dr. Wiet did only translab surgeries.. Only that my search of the forum led me to believe he may favor that approach. And also for the record, I said that both Drs had stellar reputations and that I had only heard good things about them.
Pooter -
didn't mean to step on your toes :-[ My apologies.
You did in fact say that posts on the Forum about Dr. Wiet only mentioned translab approach and you also did say that both docs have stellar reputations.
I was remiss in my post because I didn't mention that Dr. Friedman is a member of the ANA Medical Advisory Board right along with Dr. Wiet.
IMO, Kevin has two wonderful choices when it comes to a doctor to treat his AN and I'm sure he'll make the right choice for him once he has all the answers to his questions.
Best,
Jan
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Update:
-I have had the chance to speak to Dr. Kazan (the neurosurgeon) about this and he was not able to explain why Dr. Wiet felt there was no chance to save hearing, all he did say is that then can chance the surgical approach right up to before the surgery.. suggested RetroSigmoid if I was interested in attempting hearing preservation.
-I spoke to Dr's Battista and Mark Wiet about the same thing, basically asking is there something in my other test results that would give Dr. Friedman a different opinion than he has now having viewed only the MRI, they were very vague obviously not wanting to step on Dr. Wiet's toes but both did say that they were sure that Dr. Wiet would be open to changing approaches to try to save hearing.. making sure I know that it increases the risk to the facial nerve.
-I scanned and e-mailed all of my test results to Dr. Friedman (ABR, VNG, Hearing test, etc.) and he called me about an hour later. His opinion is that if these test results show anything it's that you have an even better chance of saving hearing and that you have a high level of servicable hearing pre-op. Dr. Friedman felt bad saying some of the things he said that were so out of line with Dr. Wiet as they know eachother quite well but he kept saying he would be remiss if he didn't tell me that he felt there was a very good chance to save my hearing at HEI with a Mid-Fossa approach.
I must say that I am VERY impressed with Dr. Friedman, the ammount of time he has spent looking over my tests and speaking with me and I'm not even officially a patient of his.. he has been easier to talk to and easier to get ahold of than my own Dr. who is "unavailable" As of right now I am leaning towards canceling my procedure here with Dr. Wiet and scheduling at HEI as soon as they are able to get me in.. I will wait until I've had a chance to speak with Dr. Wiet himself, I think he deserves a chance to speak his side.
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I saw Dr. Wiet, Dr. Kazan, and Dr. Friedman at the symposium in Chicago last August. They are all top notch.
My impression is that middle fossa is a particularly fussy procedure, and that not as many surgeons have extensive experience with it. The surgeons at HEI probably do more of them than anyone, they seem to have specialized in it to some extent.
My feeling is that if you want middle fossa, you are better off going to HEI, but Wiet and Kazan would be excellent if you go with translab or retro sigmoid. It is a tough call, but at least there is no wrong answer, since both are good options.
Steve
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I saw Dr. Wiet, Dr. Kazan, and Dr. Friedman at the symposium in Chicago last August. They are all top notch.
I met them as well at the symposium.......Dr. Wiet (a very lovely man!) owes me lunch next time I'm in Chicago... Dr. Friedman publically notes that he is definately not pro-radiation (which is fine... we are all certainly entitled to our opinions) and noted it to many of us at the symposium as well.
I do know of some that had mid-fossa procedure done and lost their hearing (ie: Captn Deb had mid fossa with Dr. Friedman at HEI and still lost her hearing, etc)..... to me, IMO... it all depends on what the surgeons are up against once they open up and get a clear view of the AN. The AN may be very "sticky", difficult to "peel" off the nerve and the nerve may have to be sacrificed or the AN may be wrapped in such a way, there is no choice but to sacrifice the hearing..... some have had their hearing saved, some have not. "Individual results may vary". It all depends on the particular situation and many surgeons (regardless of medical ailments) may not have that truly "clear view" until they get in to see what they are up against (vs. what any MRI/CT/PET scans may show).
the bottom line, to me, is this.... what is your gut telling you? From the pit of your gut, what is your gut saying? You are doing terrific homework.... and reaching out for answers the way you should....so, if you feel that the info is becoming overwhelming... take a step back to take a deep breath (it's ok...), then rethink the info you have... and let your gut guide you. :)
Just my 2 cents. I had coffee this am.
Phyl
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The neurotologist at Univ of Iowa also does mid fossa. Dr Bruce Gantz. I have had it on both sides due to my NF2 and am not sure why he did the first time as had poor hearing but was even worse hearing this last time and brought some hearing back.
I know some of the other Iowa alums here have had mid fossa. There is always no guarantees with this!
Cheryl R
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Hi.
No regrets you can't go back!!! Postpone the surgery. Even the smallest change for saving hearing has to be investigated. You will always wonder if you could have saved your hearing!!!
You are in my prayers
Sue in Michigan
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Thank you everybody for your advice and support! I still have not made a decision and I am quite litteraly going out of my mind right now but it helps to know that you guys and gals are here no matter what and actually understand what I'm going through, moreso than my friends and family ever could.
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Dr. Kazan did my surgery along with Dr. Battista, and I know him well. I also met Drs. Wiet and Friedman @ the ANA Symposium, just like Steve and Phyl.
And I couldn't agree with them more - they are all great doctors.
IMO you definitely need to speak to Dr. Wiet personally to get his "take" on this whole thing, but I'm with Phyl. You need to go with whatever your gut tells you, keeping in mind that there are no guarantees.
You don't want to second guess yourself; especially if you encounter some things post op that you didn't anticipate. You want no regrets.
I'm one who chose retrosigmoid in the hopes of saving what was left of my hearing and it didn't pan out. I knew going into surgery that my docs were going to "try" to save it, but I also knew I could very well lose it. I took a gamble and I lost - but I'll never regret this gamble because I was fully informed and made the choice myself.
Good luck; you're got a tough decision ahead of you. We'll support you in whatever direction you ultimately decide to go.
Jan
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As I'm sitting here a McDonalds sponging some free wi-fi I figured I'd give a quick update. I have spoken with both Dr Friedman and Dr Wiet about thier opinions and both are sticking pretty close to thier original diagnosis. As such I decided to get a third opinion, a tiebreaker if you will so I sent all my info to Dr. Gantz at University of Iowa to see what they had to say. Well as it turns out Dr Gantz came to the same conclusion as Dr Friedman with regard to the possibility of hearing preservation and that Mid-Fossa would be my best option. I have pretty much decided to cancel my Translab procedure scheduled for this wednesday and am now trying to decide between Dr's Friedman or Gantz to perform my Mid-Fossa. I like that Gantz is closer but it's hard to argue against HEI's experience and expertise.. I just don't relish the idea of recouperating in a hotel room for 5 days.. Still a lot of decisions to make but getting closer.
Thank you again for all your advice and support!
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Congratulations on decision #1 (again) and good luck with decision #2. For what its worth I agree with what your doing. Good Luck and keep us posted.
Sue in Michigan
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Kevin ~
Congratulations! Deciding on a method of treatment as well as a doctor and facility are all crucial but always difficult decisions for every AN patient. I'm pleased that, although these important decisions are somewhat agonizing, you're making progress and choosing what's right for you. This is always paramount because, as hard as the decision-making process can be, once made, you'll feel totally confident about the type of treatment (MF), the doctor and facility, which really does make the surgery experience quite a bit easier.
Jim
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Kevin -
while I'm sorry to hear you've cancelled your upcoming surgery, I'm glad you've gotten the answers you've been seeking and are doing what you feel is best for you. That's what AN treatment decision is all about.
I know that Cheryl R has nothing but great things to say about Dr. Gantz, so whether you have your surgery with him or with Dr. Friedman, you'll be in good hands.
I hope the mid-fossa approach gives you the outcome you're looking for. While I love my BAHA, given a choice between SSD and "normal" hearing, I'd choose "normal" any time.
Good luck.
Keep us posted!
Jan
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I like that Gantz is closer but it's hard to argue against HEI's experience and expertise.. I just don't relish the idea of recouperating in a hotel room for 5 days.. Still a lot of decisions to make but getting closer.
While I certainly don't think this should be the determining factor in your decision-making process, I'll mention that House has a "guest facility," Seton Hall, which is just across the street from House Clinic/House Ear Institute and adjacent (connected by an underground tunnel) to St. Vincent's Hospital (where the surgeries are performed). Patients and their families can stay there before, during, and after their treatment. My husband and I stayed there for a couple of weeks in January 2008 when I had my AN surgery and thought it was quite adequate. I found it very comforting to be so close to the hospital and to House during my recuperation period.
I only have good things to say about my House experience, but I'm sure you've seen on this forum that this is certainly not unique to House patients -- there are great places elsewhere in the country. It very well may be that the other places you're considering have similar lodging opportunities for their patients, so you won't have to be in some random hotel during your recuperation (although lots of people have done just that, and have been pleased with their results as well).
Best wishes as you make all your decisions.
Catherine (JerseyGirl 2)
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Wishing you the best on more decision making (one of the hardest parts)!
The only guarantee with AN surgeries I've ever heard is with Translab it's 100% hearing loss. Nothing else is guaranteed with anything in accordance to the AN surgeries, but at least with trying Middle Fossa and if you lose the hearing, you can at least say you tried!!!! ;)
Best Wishes
Denise
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Kevin,
The hardest thing in this process is to decide what course of treatment to undergo. You've made that now so stick to it.
cheers
Laz
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I personally think you're on the right track! My vote is for Friedman, but my vote doesn't really count! : )
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Stephanie and Kevin, it was fantastic meeting you both yesterday. Nancy, David and I are thrilled that you have kept your hearing and no weakness of facial nerve. I am so glad you chose Dr Friedman. Keep up the great recovery.
Lainie.