Author Topic: Another Newbie  (Read 5367 times)

Beck3258

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Another Newbie
« on: September 13, 2011, 10:03:59 pm »
Hi I'm new here my daughter was just diagnosed with nf2 and bilateral acoustic neuromas. I was wondering what your thought was on Dr. Weit? We live in Chicago area and we went to see him and it was a bad experience for us. Are next step was Dr. Leonetti and the skull base institute in California how ironic. If you have seen Dr. Leonetti or have gone or contacted skull base institute could you let me know your thoughts on them?
Thanks so much I wish the best for you......
Becky

leapyrtwins

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Re: Another Newbie
« Reply #1 on: September 14, 2011, 07:31:48 pm »
Wow.  Sorry to hear you had a bad experience with Dr. Wiet - that's a new one on me.  I assume you're talking Richard Wiet here, not his son, Mark?

Richard Wiet is one of THE most respected AN doctors in the Chicago area and he's also probably the most experienced.  His experience also extends beyond ANs; he implanted the first Cochlear Implant in Illinois.  He's got a wonderful bedside manner and I've never heard of anyone having a bad experience with him.  Wonder if he was having an "off" day.  Richard is also a member of the ANA's Medical Advisory Board.

Dr. Leonetti is another big name in the Chicago area, but his bedside manner - or lack thereof - can sometimes be an issue for people.

My neurotologist is Robert Battista - practices with the Wiets @ Ear Institute of Chicago - and I absolutely adore him.  He does both radiation (GK) and surgery and he also does BAHA and Cochlear Implants.  He's also heads the Pediatric Audiology program at Adventist Hinsdale Hospital.

If you want to read posts about the Skull Based Institute, search on "SBI" and/or "Dr. Shananian".

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Beck3258

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Re: Another Newbie
« Reply #2 on: September 14, 2011, 07:57:35 pm »
My bad I should of said Mark. It was Mark that we saw that day it was pretty bad. I will never go back to see him. I thought when we made the appt. it was going to be with Richard but it was not. At the hospital I work for one of the ent suggested Dr. Leonetti and I had appt. with him but had to cancell it so I have yet to make another appt. with him.....

leapyrtwins

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Re: Another Newbie
« Reply #3 on: September 14, 2011, 08:15:40 pm »
Ah, that explains it.

Mark is new to ANs and to the practice.  He's a very far cry from his father; in my opinion this apple fell extremely far from the tree.  On the occasions I have met him, I found him to be unconcerned and callous with an attitude of entitlement.  Definitely not a doctor for me, but in all fairness, I do know some who have no issues with him.  I've talked to several of his patients who were considering BAHA implants.

If you don't know to specifically ask for Richard or Robert Battista, when making an appointment, the receptionist is inclined to book you with Mark because he's the least busy at this point in time.

If you want to see Richard - or Bob - there is no shame in scheduling an appointment with either of them just because you've seen Mark.  Although Richard and Bob practice together, they are independent.  For example, Bob does radiation and surgery, while Richard only does surgery; they do different surgical approaches, Richard does mid-fossa, but Bob doesn't; Bob does BAHA implants, Richard doesn't, etc.

I'm definitely biased, and would choose Battista again in a heartbeat.  He did both my AN and my BAHA surgeries.  I send lots of patients to him and have yet to find one who didn't like him.   He's very low-key, very thorough, extremely caring, and really knows his stuff.  If you want more information about him, or about the practice, don't hesitate to PM or email me.

If you do decide to schedule an appointment with him, tell him that Jan Benjamin sent you.
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Silver Sonnet

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Re: Another Newbie
« Reply #4 on: September 15, 2011, 07:25:40 pm »
Hi, Becky, and welcome to the club no one wants to be in :)

I'm sorry to hear about your daughter, but she's lucky to have you in her corner; you sound like someone who doesn't put up with any nonsense from the doctors.

I don't know anything about either of the doctors you mentioned, but, as I posted elsewhere, please look into the NF2 study being conducted at the National Institutes of Health.  Drs. Kim and Asthagiri head the study, and they are beyond excellent.  Anyone with a diagnosis of NF2 can apply to participate, and at the very least, it provides information for improving the treatment of NF2.  In addition, your daughter will get free vestibular testing, vision testing, and MRIs even after her surgery.  Patients aren't supposed to know that they get free treatment, too.  (I think they want people who are more likely to stay in the study even after surgery and not people who join just to get free surgery; that's why they try to keep it secret at first.)  They even pay for travel to and from the institute and housing and food while you are there.

When I first heard about the study, I was hesitant to join because I didn't want to be treated like a lab rat, but my experience was unbelievably positive, and I've never heard anything negative from anyone who has been there.

Whatever you decide to do, I wish you and your daughter the best.  Hopefully you'll keep us poster :)

Raven

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Re: Another Newbie
« Reply #5 on: September 16, 2011, 07:57:15 am »
Hi Becky,

Sorry to hear about your daughter, NF2 can be very challenging, keep the faith and good luck to both of you. Hopefully CherylR will chime in.

John
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

Cheryl R

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Re: Another Newbie
« Reply #6 on: September 16, 2011, 10:58:44 am »
Hello Becky and I did post right  after yours but it is not showing  but does if look at the posts under my name.
I am sorry to hear of your daughter.    NF2 makes it all more complicated.     I am an older adult onset which isn't the usual.        How old is she and how big are her ANs?          The size and location of them plays a role in their treatment.        I am in central Iowa and go to Iowa City and the Univ of Iowa for my care.     Dr Bruce Gantz is a very good neurotologist and has many NF2 pts which is what one needs in a dr.     He is not for radiation for NF2's which some drs are.      I have had 3 tumors and hope that is it.              House in LA is good also.       I have been to several AN symposiums and been to the NF2 session with esp Dr Slattery and they echo the same way on how to watch NF2 pts and treat them.       Finding the best way to treat  bilateral ones and try to keep some hearing can be tricky.    Gantz has a good record of doing mid fossa and preserving hearing.     The AN has to be below a certain size and their location plays a part also.     Same with House.                   One has to watch for possible spinal tumors,other types of brain tumors and other  issues depending on which type of NF2 and what degree of it she has.
    Ask all the questions here you want and hope we can be of help.             Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Denise S

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Re: Another Newbie
« Reply #7 on: September 16, 2011, 12:43:23 pm »
Hi Becky, glad you came to the forum, but sorry to hear of your daughters NF2.   

I just wanted to share that there is a nice Search option at the top of the page.  You could type in the last name of the doctors you mention and see what kind of other posts there have been with them.   I just wanted to mention because I see you have only posted twice and for some people the forum is overwhelming and don't notice the search.

Best Wishes for your family!!
Denise (MI)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI