ANA Discussion Forum
General Category => AN Issues => Topic started by: MAlegant on July 17, 2008, 05:30:18 pm
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Well, I finally chose a doctor (a team no less), Dr. Bambikisi and Dr. Megerian at University Hospital in Cleveland. Surgery is scheduled for Tuesday so if I can keep the anxiety at bay for a few more days I will meet you all on the flip side. My husband Brian will try to send an email if he can once it's over. I hope to be back up on email as soon as possible. Thank you for your wisdom and collective support.
Marci
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HI Marci-
So glad you have your date - so soon!! If you have a moment, put your surgery on our calendar [url][http://www.my.calendars.net/AN_Treatments/url]. (You probably know that we are all a bunch of mother-hens and want to know who's "on the deck."
If your husband wants to copy one of us on an email, we can keep the group updated (I'll be happy to volunteer - just send me a PM and I'll send my email). In any case, we'll all be rooting for you, sending prayers, huggles, and lots and lots of good wishes.
Marci, you sound like you are going into this with a great attitude - many, many good wishes coming your way from NJ!
Debbi
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Marci:
Let me be the one of the many to offer my wishes and prayers for a successful, complication-free surgery next week. I know lots more will follow. I wish you anxiety-free days ahead and will look for your husband's post and your return to the forums.
Oh, I added your surgery date to the AN treatment calendar. :)
http://my.calendars.net/an_treatments/d22/07/2008?display=M&style=B&positioning=A (http://my.calendars.net/an_treatments/d22/07/2008?display=M&style=B&positioning=A)
Jim
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Marci -
a hot date with not one, but two cute surgeons!!! I'm extremely jealous :D LOL
Hope all goes well on Tuesday. Glad your husband will be your scribe.
Jan
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I saw Dr. Megerian just a few months ago. Without discussing any other options, he quickly scheduled me for the Translabyrinth procedure. It sounded so great..."we'll just go right through the ear canal and pull it right out! It's 'easier' these days". After discussing his approach on this forum, the SUPPORT GROUP advised me that I would lose 100% of my hearing in the AN ear! When was Dr. Megerian going to advise me of this? When a sign-language interpreter would wake me up? Then, after more online research, I discovered that approach is one of the oldest techniques - technology has not advanced this type of procedure much - if it is, in fact, the Translab approach.
If that is what he immediately recommended for you, like he did me, please do the necessary research.
On another note - if your medical information needs to be delivered from their office to any other location - PICK IT UP YOURSELF AND DELIVER IT YOURSELF. Many of my records were sent from Dr. Megerian's office - only to be continually, yet casually, LOST. AND NEVER RECOVERED. I heard far too many 'but our secretary's rather new, so...' excuses there. When dealing with pertinent medical information, whether 'new' or 'not', each matter should be handled appropriately. Medical information should not be simply disregarded as 'human error'. It's not like the cook forgot to put the pickle on the big mac - this is MEDICAL INFORMATION. When I discussed these constant errors with the doctor, himself, he simply suggested he'd 'transfer' me 'back to the secretary so she can find you someone else'. The advice was WELL WORTH IT!!! I would highly suggest a visit with Dr. Peter Weber at the Cleveland Clinic...
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I just want to step in for a moment and clarify that while translab is the oldest surgical approach, it has defintiely[/i] "kept up with the times." Many, many surgeons use this approach because it is sometimes the best/only way to get at certain tumors. This was certainly true in my case. And, yes, it does cause total AN side hearing loss. However, your other ear will hear just fine, as does mine.
Marci, if you feel connected and comfortable with your surgeons, then you have made a good choice. The choice of surgeons is a very personal choice and one that we must each make for ourselves, based on our own criteria. In Vicki's case, this team wasn't the best choice for her, but in Marci's case it was absolutely the right choice.
Marci, get some rest this weekend - you're going to have a busy week! Tell your hubby I will await his email update.
Prayers are with you.
Debbi
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My AN has not affected my hearing and because of the weird way it's growing, it's not in the ear canal. Both docs know I'm a musician and will try to preserve hearing but both also know that for me the facial nerve is the first priority. If I have to lose hearing in one ear I can live with that. The surgeon, Dr. Bambakidis (spelled right this time!), explained the procedure in detail so I know they are not going in through my ear, but behind it. I appreciate your advice however, and I'm sorry you've had a bad experience with Dr. Megerian.
Marci
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Marci -
I am scheduled for a translabrinthine approach on Friday at Mt. Sinai. I have to reitereate what Debbi said. The translabrinthine approach is not out of date, the techniques march on with technology. Aslo, even though SSD is a strong possibility with this approach my doctors both told me it is not a certainty. In any case, my neurotologiist told me he always tries to preserve the cochoear nerve so that getting a cochlear implant is a possibility in the future. This is just what he said, but other doctors may have other opinions. He doesn't feel cochlear implants are as good as BAHA or Transear right now but feels in 10-15 years they will be even better. For this reason, he tries to preserve the cochlear nerve in all approaches. It give the patient more options. In the meantime, he feels that Transear or BAHA are excellent alternatives to SSD. I can't address any of the other issues Vicki brought up, but rest assured the translabrinthine approach is not outdated.
Best wishes,
Wendy
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Marci, I am Dr Megerian's cheerleader!!! In fact he told me at my visit a few weeks ago he has been doing a lot of AN surgeries lately and that must be due to my praises for him on the internet. LOL
My surgery was also behind the ear, retrosig. Best of luck to you......you are in good hands, literally.
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Good luck Wendy. See you on the "other side" and looking forward to hearing that you did well.
Best,
Marci
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Marci -
I can't stress enough what Debbi and Wendy said. Not every doctor is right for every patient.
If you are confident in your choice, don't look back. Put yourself in the very capable hands of your doctors and focus on the future.
All AN patients are different and we all experience different issues on our journey. Someone else's bad experience doesn't guarantee one for you.
Stay strong. You - and Wendy, naturally - are in my prayers for successful surgeries. I can't wait for you guys to be posties.
Jan
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Marci,
In rereading this string I noted that Debbi said your surgery is Tuesday. Is that this Tuesday. If so, good luck to you too, you'll be in my thoughts and prayers.
Best wishes,
Wendy
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Hi Wendy,
Yes, this Tuesday. I'm torn between wanting to fast forward to Wednesday and wanting to slow time down so that I can enjoy one last run with the dogs before I go under. I've decided to enjoy each day I have and spend as much time with my family as I can. The stress level is high (my son made brunch for us today, this is a first) and we all watched a movie together as a family. These are precious moments. I'm sorry it took an AN to give me perspective, but there it is. I hope to be online and wishing you well on Thursday, but if not, you will also be in my thoughts and prayers.
Best,
Marci
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Marci
I am looking for you to lead the way this Tuesday!! My surgery, also translab, is next Wednesday (7/30) at the House Ear Institute. By then you will be where I want to be as a "postie"....doing great, up and about. You will be another beacon for me to look to as a positive experience. Just so you know, I lost my hearing in my AN side 6 years ago with CyberKnife. I have adjusted beautifully and love having the excuse for my husband, "I'm sorry honey, I didn't hear what you said!" Even my three children (now ages 14, 13 and 10) have gotten used to getting on "my good side" to ask for things! Like you, in this second round of treatment it is critical for me to preserve my facial nerve. I own my own consulting firm and do public speaking and run training programs for large groups of executives on leadership, ethics and corporate responsibility. I know I can do it with facial paralysis, but am going with the approach that my docs say will give them the greatest chance of preserving my facial nerve. I will be thinking of you on Tuesday and will be reading your posts as my date with two surgeons (Friedman and Schwartz) is just a week after you.
All the best and enjoy those long runs this weekend!
Kathleen
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Best wishes to both of you for a successful outcome and a speedy recovery....
x
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Marci -
Thanks for your reply. Since you're a couple of days ahead of me I hope someone will be posting and let us know how you are before Friday. I know what you mean about these last moments being precious. I feel the same way and that is why we went on vacation when we did., well one of the reasons when we did (I don't know if you were aware we just got back from vacation last Wednesday). We had a lot of fun and it kept my mind off everything else for most of each day. I'm sure this will sustain me through the days that are not so much fun. As I said, you will be in my thoughts and prayers. I'm keeping my fingers crossed for you to have a great outcome.
Wendy
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Marci's hubby is going to copy me on his family email updates, so I'll start a string for Marci's Surgery Update as soon as I hear from him.
Marci - GOOD LUCK!!!
Debbi
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Yea, Debbi ;D
Thanks for doing this for us; you know how we worry.
Jan
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It is because we all worry and care that we all do so well. I continue to be buoyed by this community and find it the absolute strength I need in this last week before surgery. Thanks to all for caring and worrying.! I will be focused on Marci on Tuesday and putting all my energy into her recovery. I can hardly wait to hear how well you are doing. God speed.
Kathleen
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Hi Marci,
Sorry I am so late in posting today. I wanted to wish you good luck tomorrow one more time. I just know you'll have a great outcome.
Best wishes,
Wendy
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All- I just posted the first update for Marci in AN Community!
Debbi
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;D ;D WAY KEWL Marci !!!!!!!!!!
let us know how you are doing!!!!!!!!