Dr's Seidman and Rock out of H. Ford Hosp. MI ?????

[Mei Mei]

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

[sues1953]

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

[Mei Mei]

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

[GretchenGoodWitch]

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 

[sues1953]

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

[Mei Mei]

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