ANA Discussion Forum
Useful Information => Physicians => Topic started by: sues1953 on January 22, 2010, 03:31:38 pm
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Hi
I hope I'm posting this in the right place this time. Anyway I am 57 years old (had a birthday last week) diagnosed 3.2 cm
an right side. I have only seen one Dr. so far at MI Ear Institute. I am waiting for a call from House they have my films as of yesterday. I do want to get one more opinion and Seidman was suggested to me by a friend. When I put his name in this forum I got nothing. I am willing to travel to LA if I feel they have the best of the best Doctors, which is the feeling I'm getting from all the reading I have been doing here. I do want a 3rd opinion with an ENT that does allot of these as close to me as possible. Any suggestions??? Anyone in MI heard of Seidman? I am really anxious to have my decision made. Thank You All. Susan
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Hi Sue, welcome. I think you might mean Friedman at House. Try that.
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You mean Rick Friedman at House. He's very nice and read my films and reports. I almost went to House but decided to stay local at Johns Hopkins and haven't regretted it. I love my doctors and nurses there. The whole experience was wonderful.
There are lots of reasons to stay local and Johns Hopkins and the docs there are top notch so I had no qualms with staying close to home. You have Michigan Ear Institute local for you but it may be far from your home. You might as well go to Los Angeles ... it's a choice you have to make. I don't know your situation in MI to advise you. Talk to someone on the Willing to Talk list that has already gone to House. I did that here in Maryland, but I still decided to stay home. One reason is that Dr. Friedman said that he wanted me to stay out there for 10 days. I did that once before but that was 20 years ago and I had different home responsibilities; I can't speak for you and what your home responsibilities are and how flexible you are and how far you are from the Michigan Ear Institute. You can certainly get one opinion over the phone from Dr. Friedman by sending the MRI CD and reports to him and one opinion from Michigan Ear Institute which would make two opinions.
I personally had four opinions before I settled down: House, Hopkins, Maryland and Dr Selesnick at Cornell-Weill.
It's AN surgery and I don't blame you for being worried about your choice of docs. After all you're putting your life on the line with them and trusting them. It's an important choice.
Good Luck with the choice...
Mei Mei
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Hi! I went to the Henry Ford Hospital Website and keyed in Acoustic Neuroma and came up with Seidman so you might be well off going to see him and Rock for a yet 3rd opinion and go with your gut with whomever you feel most comfortable with.
By the way, the surgeon who operated on me at Johns Hopkins so successfully and is chairman of the department there, graduated from the University of Michigan Medlcine! His name is John Niparko.
Keep collecting the opinions quickly and we'll support you in whatever way you need!
Mei Mei
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Hi Mei Mei
I was referring to Dr. Seidman at Henry Ford. I did get opinions from two Doctors at House, Wilkinson and Slattery They both concerned with the Dr at Michigan Ear Translab no chance of saving the hearing.
I am a need to know kind of person but i have to admit that some of the things I read on this forum scare the bajeebies out of me. It seems to me that many of the post opp complications have to do with the way this surgery is done. There is a lot of important stuff in the way. While I was waiting for The doctors at House to call me I started researching Skull Base Institute. I think I have read everything I can, especially on this Forum. I have PM'd everyone that has had surgery there and for the most part it has been very positive. I have sent them them my info and set up a consultation. I started working with my Primary Care Phy. for a referral (I have an HMO) he finally came though but my insurance co denied my out of network request. I talked to Roxy (she schedules surgery and works with ins companies at Skull Base) she said that HMO's in particular can be very difficult and suggested that I change my HMO for a PPO. I can do that but not until October which is when "Open Enrollment" is. SOOOOO I am seriously thinking of waiting. It is a little scary since my AN is large but my symptoms are few.
I will continue to fight with my insurance co and have a 6 month MRI done if possible (ins issues again) to check tumor growth. If it is not possible to go to SBI or it turns out not to be advisable to wait, my choice will be Michigan Ear, the have the most experience (about 40 a year).
Thanks for you input...this is probably much more that you wanted to know. I will probably post the question of should I wait or not but the feelings of many of the people here are leery of the Endoscopic surgery for AN's.
Thank you for your help and continued success on your recovery.
Sue in Michigan
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Hi Sue and thanks for your reply...of course i like listening and supporting you. I just wish I could help you more. Insurance is such a terrible thing to fight and yes by all means switch to the PPO. I was diagnosed on Nov. 6th and saw the surgeons in mid Nov. and had the surgery date for Jan 12 by the end of Nov. They couldn't give me sooner. Even though the 1 cm tumor they say is slow growing and I had no eye symptoms in Dec. when I saw the neurosurgeon for the first time, the weekend before the surgery I began having the eye twitches and on the cell phone call that the doc made to me on the way to the hospital by chance to check on how I was doing I reported on the new eye symptoms and he said it was a sign to take the tumor out and that it was growing....it does grow and I don't want to scare you ... I hate watch and wait. and I wished that you didn't have to wait until Oct, but line up your guns for October and go in shooting like Tod did. Believe me you'll be glad this is all behind you and you'll be recuperating and have your stitches out.
Feel free to write, I'll help in whatever way I can, but I'm not a doctor or an expert by any means.
Melissa in Atlanta is a great resource.
Sincerely,
Mei Mei
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Thanks MEI MEI :-*
Sue in Misery...opps I mean Michigan :)
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Dear Sue,
I just went to the SBI website you introduced us to and thank you for that. I read with interest the section on ANs and minimally invasive endoscopic surgeries. It might be a good option for you. Have you made an appt with Dr. Shahinian?
Sincerely,
Mei Mei
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Hi Mei Mei
Yes I have a phone consult scheduled with Dr. Shahanian on March 4th but it looks like I am going to have to cancel it. His fee for a consultation is 750.00 and my insurance has denied out of network benefits. I am prepared to fight but even if I prevail the surgery is too expensive for us to do right now. If I wait until open enrollment I can change my coverage to a PPO but even then I don't think I can get away with owing less than 20K. The next open enrollment is October, 8 months away and with a tumor my size I'm thinking is too dangerous. I am very discouraged.
Thanks for your support.
Sue in Michigan
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Oh, my goodness, Sue...a phone consult is $750!!! That's outrageous!!! I don't know what this world is coming to. Would you prefer to do the minimally invasive route after having read all the literature or go the way we all have and God willing wait until October? What does your HMO allow you to do?
From the posts this morning the doctor at the Univ. of Michigan in Ann Arbor sounds good. Is he in your HMO?
Wishing October would hurry up...
Mei Mei
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Hi Mei Mei
Yes Dr. Telian is in my network and I am seriously thinking about going to see him. I read the link that Steve posted and all the tumors they talked about as far as I could tell were smaller than mine.
I would defenatly go the newer endoscopic route if I could get my Ins. to pay for it. Its not looking good at this point. :(
Sue in MI
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Dear Sue,
It's well worth the consult with him and while you're there be up front with him and ask him what he thinks about waiting till Oct and you specific tumor and going with non invasive endoscopic surgery. If he's a good doc. he won't be insulted by the question and will give you a straight answer. You don't have time to fool around with immature people. If he says you don't have time to wait until Oct. and the people at House say the same thing, then you have more information. The House people read your scans for free which is a real service contrary to what the SBI people do.
My doc at Johns Hopkins back in Nov. said I had no time to wait and they were right. Like I told you in the previous few post back, the weekend before my surgery in Jan. there was even pressure on the optic nerve, so new symptoms start to appear.
Gather your information with Dr. T in Ann Arbor and compare with House and then decide whether or not to wait out the odds till October.
I hope this support and listening helps. Take care and keep the faith!
Mei Mei
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Dear Mei Mei Yes it really helps a lot I feel you on my team :-*. I think that's exactly what I will do, I will make the appt with Dr. Telian today. I just got this huge feeling in my heart that Skullbase was not to be. I feel really good today.
So tell me some more about you. Your tumor was smaller than mine I think but your symptoms must have been worse. I know I was having more symptoms the last couple of weeks but I have been sick, bad cold, then the flu :(. I think that caused my dizziness because its much better now.
You had surgery pretty quickly right? When do you go for another MRI 6mo or a year? Are your symptoms better since your surgery? From what I've read there's a lot of post surgery stuff to deal with but it gets better with time. How many opinions did you get?
What do you think of Tod, OMG I can't stop thinking about him, which is good because I send up a prayer several ties a day. What a trooper huh?
Your AN friend....
Sue in Michigan
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Hi Sue,
I'm glad you're feeling better today. I've been having post op headaches and a whopper last night. Even had trouble getting to the bathroom to the bottle of Motrin, but did it.
I really think about Tod alot and hope he is doing better day by day. He's quite a trooper!!!
I was diagnosed on November 6th on a visit to an ENT because I suspected a hearing loss and thought I had some ear wax or a middle ear infection. He said I had neither and had the audiologist test me and found I had a 35dB loss. He referred me to Hopkins and Univ. of Md. after the MRI on the following Tuesday showed what he suspected was the AN. I had these appointments on Nov. 19 and one in NY at Dr. Selesnick at Cornell who was neutral and recommended surg., radiation or watch and wait. But Hopkins and Maryland and House recommeneded Surgery for my 1cm small tumor.
I was experiencing some vertigo, tinnitus and some facial symtoms but nothing else.
Maryland and House recommended Middle Fossa Surgery. Hopkins recommended Retro Sigmoid. Because Hopkins is close to home and rated by US News and World Report at No 1 in the country for ENT I chose them and also because my experience was the best with them, but it was a hard call because my phone calls and emails with Dr. Rick Friedman at House were so warm and incredible.
My recovery has been great with the exception of the headaches. No facial symptoms at all. I am unfortunately deaf on the AN side Of course the Skull is numb on the surgical side and Jim emailed me and said it will be for about 9 mos to a year.
I had an MRI on day 2 to check whether they got it all and they did. I had a Post Surg. visit on Monday and my surgery was Jan 12. I saw both the neuro. and ENT and the audiologist. Long day!!! They want me to see the ENT in June to discuss the BAHA so I have an appt on June 14.
The neuro wants to see me at 1 year post op after an MRI to check on me .
So this is the life of a Postie. I am on leave from teaching high school but don't know how I can go back before the end of the year if I can't hear in class to teach so I am on disability. I have seen Human Resources about that. They have been very supportive. Now if only I can get help for my headaches. See my posts on Headaches today.
Take care and keep up the spirit. Do what you think is BEST for YOU!!!
Mei Mei
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Hi Mei Mei
I hope your headache has eased up, I've been sending prayers your way. My husband's dad died and we have been dealing with that, the funeral is today. He was sort of estranged from the family (his choice) but my hubbie is taking it hard.
Your a teacher ;D, my daughter is a teacher, I should have guessed it from your caring nature. I have read threads from teachers that had to deal with the classroom being SSD I guess some deal with it better than others. If you can get paid for the rest of the year or afford to go unpaid I would relax and get my Baha learn the new way of hearing and be ready go in the fall. Sounds great huh? No pun intended.
Anyway, thanks for filling me in on your story and I am praying that all goes well for you.
Sue in Michigan
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Hi Sue,
Thanks for the prayers on this day of days for you. My condolences to you and your husband on the loss of your father in law. This must be rough to take even though he is estranged. That must make it even harder to pick up the pieces.
I am also thinking about the SoundBite besides the BAHA because there is no surgery involved, but it is not fully developed and the battery lasts only 7 hours. Most of the people on the website don't like it and prefer the BAHA but I'm still interested in the Sonnitus, it's just that it is only being clinically trialed to patients in the San Francisco area. I emailed them and they said they would keep in touch. Doesn't sound very promising. I could be patient and wait a couple of years. Then again maybe I should move forward and just do the BAHA surgery this summer and get it over with. I like you have a lot of decisions to make, but my major decisions are behind me.
I pray for you about the choice of your doctors and what's ahead for you and your insurance. I'm sure by now you have bought a notebook and are keeping a journal with a log of all the phone calls you are making. They have to be consistent and be held to their word. Don't let them tire you out. You'll persist and find the best outcome for yourself. We're all behind you!!!
Take care,
Mei Mei
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HI Mei Mei,
You arent kidding I have three folders and a notebook filled with information. This is to much like work ::)
Finding the right hearing device could sure be a lot of work. Can you try each of these out to see how they work for you? I read something here on the issue of waiting for a while or getting the Baha or whatever right away. I can't remember which was recommended. I have heard people say that if you have hearing loss before surgery it is not that hard to get use to SSD. I will look around and see if I can come up with that thread. I would think the sooner the better. You would have the summer to get the bugs out before school starts.
Good luck :) Prayers for the best decision are coming your way.
Sue
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Dear Sue,
Thanks for the prayers and thoughts. I'm reading around on this forum that you have or have had several appts with Dr. L. that someone said they really liked. You're next going to see Dr. T in Ann Arbor and should gather a lot of facts there. Gathering the facts feels like an education in itself and very empowering; it's very helpful in the long run on that day that you say to yourself I'm going to make my date with such and such surgeon. You're really doing your research on this forum and seeking out good advice here and from the medical community. Just think, next year this time you'll have this all behind you and you'll be a Postie!
I too am praying for you and hope that you get the better out of the Insurance people.
Sincerely,
Mei Mei
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Hi Sue,
I'm a newly diagnosed gal from Michigan. I was wondering if you ever saw Dr. Seidman and if you had an opinion. I saw him Thursday. He seemed straightforward and candid. At this point I am waiting to hear from Dr. Rocks office to set up an appointment. Seidman wanted him to see my MRI to decide on what would be the best approach because of the location of my tumor. I am still very much in the research stage (surgery vs radiation, what type of surgery). Seidman was the first doctor I saw so I don't know how much my opinion is worth, but I liked him and the way he talks to patients. Has there been anyone you've been impressed with?
Thanks so much
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Gretchen
I have a friend that was diagnosed with Cushings disease, which is pituitary gland disfunction I believe, after an MRI a tumor was discovered on her pituitary gland. She had experience with Dr.'s Rock and Seidman because she had worked for them. She changed her insurance plan so she could have them operate. They went through her nose and totally resected her tumor. It was amazing to see her recover, she lost almost 100 lbs in one year. She contacted Dr. Rock for me and he said he would be glad to see me for my Acoustic Neuroma. After much research I learned that although they are very good physicians there speciality is not Acoustic Neuromas. You really want an ENT surgeon that specializes in your particular tumor type.
I would suggest several opinions. Michigan Ear Institute in Southfield I believe does the most, Dr. Katrush heading up the team. Also Dr. Telian at U of M has much experience. Also I would say to make sure you send your films to House Ear Clinic in California.
They are the most experienced in the country and give free phone consults. I found them to be an amazing resource. The number and address can be found on their website. They get back with you right away.
I hope this helps you can certainly send me a personal message, give me your # and I would be happy to chat with you.
Good Luck, Sue
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Hi Sue,
How are you coming along? How are you feeling? Are you going to wait until Oct for your open season have you settled on a doctor in your plan?
Hoping for the best outcome for you...
Mei Mei