Well, darn, they want to charge me!

[Tisha]

I never heard from JHH, so I called the coordinator to see if they received my package.  They did, but they have staff take a look at my MRI, etc. and give their "thoughts" or whatever to Dr. Rigamonti, who then doesn't call me with all my concerns....but writes me a letter.  I get charged up to $100 for that.  I'm not very happy about that, considering Dr. change called me within 24 hours and I can send him any questions I want.  I know $100 doesn't seem a lot, but he seems not to accessible. 

Has anyone ever seen a Dr. Ganz in Iowa?  I heard he was very honest and good.

Tisha

[OTO]

From what I have read, the House Clinic (also known as House Ear Institute) will do free phone consultations after you send them your MRI....  I haven't read or heard of any other specialists doing free consultations...

[Tisha]

Thanks.  Dr. Chang at Stanford called me within 24 hours.  I didn't contact the House Ears because I know I don't want surgery, and my assumption is that is what they do, not radiation.   I understand that many doctors are extremely busy, but I don't want a letter.  I know what it will say.  I want to ask questions, which may lead to more questions. 

[sgerrard]

I think I would be miffed too if a doctor charged me $100 for writing me a letter. One of the things that drew me to Stanford was that Dr. Chang answered my first email to him within 24 hours, on a Saturday. I have heard similar stories from others.

Steve

[Sue Vogel]

Hi Tisha,  Dr. Gantz from the University of Iowa Hospital and Clinics was my surgeon.  Several of us on the forum had Dr. Gantz.  He's one of the kindest and most professional doctors I have ever had.  He brought me to tears (in a good way as in "relief") on my first visit to his office.  He explained every detail and answered everything on my four page typed list of questions before I could ask.  He even had my tumor removal video taped for me since I'm a science teacher.   My husband and I absolutely love the man.  He is world famous for his work and has done many (lots) of AN surgeries.   He is head of the department for Otolaryngology - Head and Neck Surgery at the hospital.  I was fortunate in that my ENT knew him personally and got me in immediately to see him.  On our first visit, there were people there to see him from all over the country.  His human side surpassed any I have ever seen in the medical field - especially for someone in his high position.  His phone number is 319-356-2173.  His main secretary is Kathy Williams at 319-356-2481.  She is pretty easy to reach by email at kathleen-a-williams@uiowa.edu.  Dr. Gantz's email is bruce-gantz@uiowa.edu.

Good luck to you.  Let me know if you get in touch with Dr. Gantz.

SUE

[Tumbleweed]

I, too, received a consultation in the form of a letter from Johns Hopkins and was charged (I believe about $69). However, this didn't bother me. I was happy to pay for one more expert opinion on such a critical matter. And consultations in person (that is, an office visit with a neurosurgeon) can cost several times as much. But $100 seems a bit high for simply a reply by letter.

All that said, it was the personal counsel by telephone, freely and promptly given, from Dr. Chang at Stanford -- along with his stellar reputation for expertise in treating ANs -- that convinced me he was the best doctor to treat me. You will likely receive no greater personal attention from any other doctor, IMO.

Don't discount House Ear Clinic. Dr. Derald E. Brackmann at House also reviewed my films and test reports for free and counseled me by phone without charging me. House has recently begun recommending radiosurgery for some patients -- including me -- so don't conclude so quickly that they will try to sell you on having surgical resection. I deeply valued hearing Dr. Brackmann's expert prognosis and recommendations. He called me twice and emailed me several times, all at no charge.

Another place to get a free consultation, albeit by way of a return letter and not a phone call, is the University of Pittsburgh. I also did this and deeply appreciated their input.

Best wishes,
Tumbleweed

[ppearl214]

Tisha, for what its worth... Dr. Medbery on the CK Support site will also read your films for free... If you give him a heads up that your MRI's (on CD) are forthcoming, he will read them.  I have emailed him a view or 2 of my scans and he read them online for me... with his thoughts. Heck, he didn't even charge me a drink when I met him 2 mos ago... 

Phyl

[Tisha]

Phyl, Sue, Tumbleweed, Steve,OTO,

Thanks for your replies.  My local Neurotologist has met and has a deep respect for Dr. Gantz, his opinions and honesty.  He has mentioned him to me twice.  However, isn't he more of a surgeon that radiologist?  I think it would be worthwhile sending him my MRI's and getting an opinion. 

Actually, I pretty well know at this point that I want hypo-FSR, really no doubt in my mind, and with the cyberknife.  My only waffling point is the 3 treatments vs. 5 treatments.  Dr. Medbury told me on the cyberknife forum that there are no real studies or research out there at this point that says 5 are better than 3, but maybe in the future there will be.   That is just my sticky issue I can't seem to come to grips with.

Phyl,  you said your Doc almost insisted he give you 5 with CK.  I wonder where he got his opinion about that.  I've also read 5 is better for hearing preservation, but that was from studies done by Dr. Lederman.  I don't think anything has been published substantiating this claim.  I also posted a similiar question to Dina Golden to see if she knew anything and she also said she's heard of that, and wouldn't be surprised if that turns out to be true, but she doesn't know of any published studies either.  I find this very upsetting.   Did you Doctor tell you why he thought 5 was better than 3...any studies of their own, etc?

I think the thing with the letter that bugs me is I already know what they are going to say.  You are a good candidate for radiation, which I already know.  I doubt they could add much more than what I've received from Dr. Chang...other than why they do 5 vs. 3.

Okay, I'm babbling now.  Thanks for all your input!

Tisha

[sgerrard]

Hi Tisha,

Although many believe that hypo-fractionation is better for hearing preservation, they are still at a point where there is no definitive study showing that it is better at hearing preservation than single dose treatment. Since they are still working on that, it is unlikely that you will find a definitive study on the 3 vs 5 question. I think the main thing is that 3 or 5 is gentler than 1, and either way the results are good.

In my own case, I never even considered that aspect. The results at Stanford have been very good, and I was quite happy to go along with whatever Dr. Chang prescribed. If I were you, I would focus more on where to get treatment, and which doctor, rather than how many fractions you get.

Steve

[Dog Lover]

Tisha,

Thanks for your replies.  My local Neurotologist has met and has a deep respect for Dr. Gantz, his opinions and honesty.  He has mentioned him to me twice.  However, isn't he more of a surgeon that radiologist?  I think it would be worthwhile sending him my MRI's and getting an opinion.

I also had Dr. Gantz. Awesome doctor. Yes, he is a surgeon. In fact when I saw him on my first visit, I was wavering between GK and surgery. And I agree with Sue - most questions I had for him were answered before I even had a chance to ask them.

If you want to PM me, I will share his thoughts (what he told me).

Cathy

[Tumbleweed]

The results at Stanford have been very good, and I was quite happy to go along with whatever Dr. Chang prescribed. If I were you, I would focus more on where to get treatment, and which doctor, rather than how many fractions you get.

Steve

I completely agree with Steve on this point, Tisha. If you are sold on getting CK, then I'd suggest finding the doctor and medical facility with the most experience and best track record with CK (usually the same). Where technical matters such as cutting-edge medicine are concerned, practice makes perfect. Speaking theoretically, I'd rather have one of the world's preemininent doctors treat me with 3 precision treatments than have someone with less experience give me 5 possibly compromised treatments based on some hypothetical premise that more fractionation is better.

Besides, you can drive yourself nuts with all the other considerations such as which "generation" CK machine are they using, who are the technicians on the medical team, etc. Unless you work with this stuff in the trenches every day, you can't possibly form informed opinions about every detail of the operation. Just as you would when searching for a dentist, auto mechanic, or roofer, it's probably a good idea to go with the outfit with the best reputation and then trust they will take good care of you.

I'm not trying to understate the importance of performing due diligence before making a decision. I applaud your thoroughness. But some aspects of your chosen treatment will not be black or white. At some point, you've got to just surrender, know you picked the best team, and trust you have the best odds for success.

Sincerely,
Tumbleweed

[tryherd]

In response to OTO:
House Ear Institute isn't the only place for a free phone consultation.  I am working on selecting a surgeon to operate on my 4.5 x 4.0 cm acoustic neuroma.  I heard good things about Dr. Bruce Gantz at UofI and called his office.  I was just going to get information on where to send my medical records for a possible consult and his office manager said Dr. Gantz is in his office would you like to speak with him.  I was amazed, but after a moment I said "Sure, that would be great!"  I had a lot of general questions, having just had the results of my initial MRI for only a couple days.  He was EXTREMELY generous with his time and answered all of my questions.  I later FedExed him my MRI and records and he immediately called me for a phone consultation, analysis, and some very comforting thoughts on my tumor and its possible treatability.  While I am now going to be treated by Delashaw and McMenomey in Portland, I have to say with the good recommends and the easy access I had to Gantz, I was torn.

[leapyrtwins]

tryherd -

have you seen this recent link regarding Dr. Delashaw?  I don't want to alarm you, but I'd be remiss if I didn't pass on this information.

http://anausa.org/forum/index.php?topic=8856.0

Jan

[tryherd]

leap:
Thanks for your response to my post.  My analysis on Delashaw is that he has an ego (I figured that out just by talking with his office manager on the phone), but IS a very good surgeon.  I have a reliable recommend that he is good.  I already feel that surgery is my best option, especially after my conversations with other doctors (i.e. Gantz and my local ENT).  My tumor is large and I am concerned that radiation could be dangerous for me.  Therefore, Delashaw's attitude towards radiation is O.K. with me.  I agree with him.  I am already ruling radiation out for me.

[leapyrtwins]

herd -

I wasn't really referring to Dr. Delashaw's ego - although that would bother me -  I was referring to the malpractice sues mentioned in the post I provided the link to.

I don't know if this is just heresay, or if there really are malpractice suits, but it might be something to check into.

Patients aren't above filing frivolous lawsuits, but if it were me I'd want more information.

Just my two cents,

leap