Any recommendations on doctors (ge) in NYC who have time for their patients

Hi all,
Have just today discovered this site and you all are just terrific!  My partner was diagnosed with  Hep C (1b) and cirrhosis, just had biopsy results, stage 3, and is just now getting to treatment options.  His present doctor is a "big name" but has no time for explanations and long waits for appointments.  We're just learning all about hcv/cirrhosis/existing treatments/vx-950/etc., and looking for a new treating gastroenterologist as well as second and third opinions! We're in Manhattan, I know there are dozens of excellent doctors out there but it is a real hit or miss operation finding the right one.  He is eager to start on treatment and getting better and needs a doctor who will take the time to explain!  Any recommendations?  Thanks again to you all.

[jmjm530]

These two are also "big names" but excellent from all accounts. I agree that  "bedside manner" and communication is very important, but sometimes it's up to us as patients to play our part to insist  on more time as well as being a formed and proactive patient who can double-check on their physicians.

1. Ira Jacobsen MD  http://www.hepccenter.org/contactus.php

2. Douglas Dieterich MD V=http://directory.mssm.edu/faculty/facultyInfo.php?id=21794&deptid=18'

[jmjm530]

Try this link for Dr. Dieterich:

http://directory.mssm.edu/faculty/facultyInfo.php?id=21794&deptid=18

[jmjm530]

If you're talking several opinions -- not necessarily a treatment doctor -- and you don't mind a day trip to Boston, you can't do any better than Dr. Afdahl at Havard/Beth Israel, who like Jacobsen and Dieterich is involved in a number of trials, etc.  But like many in his position, you may have to wait awhile for your first appointment.

http://www.bidmc.harvard.edu/sites/bidmc/Find_a_doc/doc_detail.asp?sid=41414547424742

[cuteus]

PLENTY of  names to choose from in the metro area, that is for sure!.  On the Island; Dr David Bernstein, director of hepatology of the LIJ systems: http://www.gastro-pro.org/index.html?http&&&www.gastro-pro.org/aga/aga.html

and Melissa Palmer at liverdisease.com with two offices on LI.
good luck on the search

[jmjm530]

Another advantage to Afdhal, is that he's testing a nifty little device for FDA approval called Fibroscan. As a private patient of his, you might just get a scan thrown in which could add additional information to your husband's biopsy result. BTW stage "3" is not considered "Cirrhosis" although depending on the report, he may (or may not) be in the early stages. FWIW I had my biopsy slides looked at by several doctors and the variance in readings was either remarkable (or disturbing) depending on your point of view :) Do bring your original slide set with you to whichever consult you see and have them review the slides. Preferably, you'd get the slide set to them in advance of the visit. This is not the report itself, but the actual slides which is a set of usually 4 or 5.

[Kalio1]

You a be stage 3 ad have cirrhosis.
Most liver diseases do not involve all parts of liver equally. Thus, it possible that a biopsy from one area may yield different results than a biopsy from another. In addition to the somewhat irregular distribution of liver
injury, the biopsy samples may not be entirely representative.

[West Village gal]

Thanks to you both.  These comments are invaluable, espsecially the suggestion about the slides.  I do have a full file of all prior bloodwork and test results, but it would not have occurred to me to ask for the slides themselves.  Live and learn.  Dr. Jacobsen is not under our plan, but Dr. Dieterich is, so we might start with him.  And the idea about a consult in Boston is wonderful.  It is so heartwarming to have such support from you all!

[jmjm530]

Yes, that unfortunatly is the limitation of needle biopsy, but it's still considered the gold standard. Within this context, stage 4 is cirrhosis, not stage 3. That said, maybe there are other indications such as varisces, ascites, etc, that lead her doctor to think he might be cirrhotic. I was just referring to the biopsy report itself which was stated as stage 3.

[Snookmiester]

Dr Diertich comes highly recommended, as not only does he have great experience and knowledge, but he himself had HCV, treated, and cured...So who better to understand and relate with a patient undergoing the hardships of diagnosis and treatment..

[FlGuy]

Waiting a bit to see a doc is not necessarily a bad thing.  It can give you and your partner a little more time to be more hcv informed which is importnat as treatment (ts) is considered.  In you post you indicated that he has cirrhosis and that the biopsy indicated stage 3.  Cirrhosis is actually stage 4, so you may have a need for clarification for that point.

...

[West Village gal]

The actual biopsy diagnosis was chronic hepatitis, clinically hepatitis c, moderate activity (grade 3) and early bridging fibrosis (stage 3).  The MRI indicated early changes suggestive of cirrhosis.  I'm flying a little blind here because we won't get a chance to see our doctor until a month after the biopsy itself, so although I have the results, I haven't had a chance to discuss them with him.

[jmjm530]

Just make sure you get the entire set, including the special stain slides. They only gave me one slide the first time I asked, and it made it more difficult for the consulting pathologist to get a good read. BTW one of our members recently went to Dr. J, in NY, referenced above,  and he apparently charges $600 for a one time consult. However, she did feel she got her moneys worth as he and his nurse spent over an hour with her. Being out of plan, you probably would not want to treat with him, but as an outside consult, you might still consider him.

[jmjm530]

You understand that none of us are doctors here -- but that said, IMO the biopsy trumps the MRI in that an MRI may "suggest" cirrhosis but a biopsy is usually used to *confirm* it. In other words, it sounds like your husband probably doesn't have cirrhosis. Anyway, one more question to ask what appears to be a short-list of consults prior to treatment, which btw I consider an excellent idea. I saw three or four myself before actually starting.

[Kalio1]

I dont have a biopsy so in a effort to get an idea of my grade and stage, which I assumed would be a "4" for the stage because the CT scan showed cirrhosis, the doctor told  me no, that I should not assume that and I said well I thought cirrhosis WAS stage 4. He said it wasnt that cut and dried and that is how I came to ask could I have cirrhosis and be grade 3? His answer, yes. There can be areas where cirrhosis is starting and areas there isnt any so you could be stage 3 and have cirrhosis. This is why I think it is best to have the CT scan, all the metabolic tests as well as the biopsy to really get the best view of what is really going on. It seems to me short of any thing too out of whack metabolically to indicate otherwise, that kind of reading (like West VIllage's mate has) is in the early stages of cirrhosis and still in the 3 stage.

[Kalio1]

I wanted to say welcome to the forum. I hope you have good luck finding a doctor. I also wanted to agree with FLGuy in saying that you have plenty of time. It is a lot to absorb. So much to learn and decisions to make. Take all the time you need. It required some life adjustments for me and I think it does for many so don't feel you have to rush through learning all about it. People often come back and say they would have done things a little differently had they learned more about it beforehand.

[West Village gal]

Well, you are all helping me in getting a jump start on my learning curve!  There was a recent article in the NYTimes about a study involving how doctors revealed or did not reveal the existence or degrees of errors in care to the patients themselves.  A fairly large percentage of the doctors would respond truthfully regarding their mistakes but only if their patients asked.  So as jm noted, we need to be prepared to ask the right questions.

[jmjm530]

The discussion is getting abstract. Yes, biopsy has limitations, MRI has limitations, Ultrasound has limitations  and CAT Scan has limitations. That's why often all four and used in combination to help diagnose and manage hep c. However, of the four, needle biopsy is still considered the gold standard in terms of predicting the amount of liver damage, including cirrhosis. In fact, the scans are used mostly to screen for liver cancer, not cirrhosis, when a recent needle biopsy has been done.

Fortunately, "West Village" has the advantage of both a scan and a needle biopsy. Hopefully any one of the doctors suggested will be able to clarify the liver damage issue better. In lieu of any conflicting medical info, I would like to be optimistic and think that whatever the scan "suggested" indeed was not cirrhosis per the stage 3 biopsy.

-- Jim

[jmjm530]

Yes, the inevitable delay in treating can turn out to be a blessing if you use that time to study up a bit. Your man is very lucky to have you as a partner.

[West Village gal]

Many thanks for your kind words, jm.  We're so lucky to be in a place with so many resources.  We met a gal having a biopsy done at the same time who had come up from Florida, and had all her treating doctors here in NY.  I really appreciate the suggestions and support.

[Mister beagle bailey]

Well, today I called Quest up to retake my PCR and CBC.  You all know that I relapsed but here's the kicker.
They told me the Dr had to call before they could approve it.  I also told them I was suppose to have 2 vials drawn but the girl could only got a drop of blood for the second vial.  Anyway, my drs. office called them to redo test but Quest told them I never had a test on Aug. 23 and that my last test was July.

WHAT!!!!  So my dr said to them, if he didn't take a test in Aug. why do I have results from Aug sitting on my desk.  DA!
  

This is crazy, my Dr and I decided that I should go to labCorp.  The results might be the same, but I don't like how Quest conducts business.  My Dr. again reminded me of all the screw ups with Quest the early part of last year.

Any feed back?

Beagle

[friscosue13]

I had the same dilemma -- a big name but a real "prima donna".  Then I found Dr. Miguel Cintron in my neighborhood -- Maspeth, Queens.  It sounds far away, but it's a hop, skip and a jump over the 59th Street Bridge.  He listens, explains, and I have been very happy with him and his staff.  I did my last shot last Friday, and swallowed by last pills last night.

Of course he's listed, but if you need further information I'll be happy to supply it.

Be well.

[jmjm530]

I'd start logically.

Have the doctor fax you the results of your last test.

On Quest's test result form (I'm looking at one now) , will be a "collected" date, a "received" date and a "reported" date plus a, specimen number, etc. That is where I would start to make sure it's not your  doctor screwing up as opposed to the lab. Then take things from there.

One other thing, when Quest does a VL, they often do what is called a split report. In other words, the split the blood into two different specimen numbers -- one for the VL and the other for the rest of the work. The problem could be as simple as the person answering the phone not noticing that and therefore thinking you didn't have the VL done. A second call from your doctor's office to speak to another rep or a supervisior might be in order. I've used Quest for all my tests and found them pretty good.

Hopefully, whatever is going on will end up working to your favor. Good luck!

-- Jim

[Mister beagle bailey]

The wife is not handling it to good.  What do you think about what Quest said?  Do you think their covering their @ss?

Beagle

[jmjm530]

I would be VERY surprised if once you get the specimen number from the VL test , that Quest will not be able to locate your results. That's why you really want to look at the original report yourself.

[FlGuy]

Like Jim, I've never had a problem with Quest.  And, Jim's suggested approach seems like the way to proceed.  
Too bad it all came up on a Friday holiday weekend. Saying put it out of your mind for a fews days is not going to be a big help to you. I feel for you, guy. Hope Mrs. Beagle has some patience.

[Mister beagle bailey]

I have a copy of my Aug. 23th blood work.  So I know it's not the dr.  Oh and before I forget, I didn't have the bDNA PCR test done, it was my mistake.  I had the HCV RNA, Quantitative Real Time PCR.
Just got a call from my dr and Quest just called and they found my test results.  That's only after my dr put up a stink and asked to talk to someone higher up.  Who know's, but I have to say that this is crazy.

Beagle

[jmjm530]

I get all my results faxed to me direct from the lab, but I remember one time when I was impatient and called the NP to get into the computer. She said I was "non-detectible" but I still had her fax me the report. I do not want to "hear" anything, the only thing that matters to me is what I *see* written down. You have no idea how many mistakes are made by incompetent or rushed "professionals" in terms of mixing up and giving out the wrong results. In your case, it could be any number of things from your doctor's secretary not giving Quest the correct specimen number and/or date, to the Quest phone rep being new on the job...or yes, possibly a screw up at the lab but I'd put that last on my list from past experience. That's why you gotta look at the results yourself which I'm assuming your doctor must have or how else did he know you still had some virus.

[Mister beagle bailey]

Also I have to say, I've on the phone with Quest off and on since 10 AM and it's now 5:57 PM.  It took my dr to get them to find it and they were also earlier giving me results over the phone that didn't match what I had, it turned out to be someone else with the same name.

Beagle

[jmjm530]

Glad it worked out. Had a feeling the results were there somewhere.

As to a re-run, the test you had is pretty accurate with a sensitivity of 50 IU/ml, but I suppose you could ask your doc to run the even more reliable bDNA (sensitivity 600 IU/ml) with ihstructions to run the HCV RNA Qualitative TMA if the bDNA comes back negative. Hope things work out. I'll say a prayer tonight.

-- Jim

[jmjm530]

Don't want to harp on it but do yourself a favor and get a hard copy of all your tests. Never trust test results to anyone, especially doctors :)

[Mister beagle bailey]

Thanks for the prayers I'll need them.  I have a copies of all my test and reports, not jut on Hep C but going back to the 1970's.  I have always done that, the wife had to buy me a few more filing cabinets.  LOL, I have to move some into the garage.

Beagle

[jmjm530]

Well hopefully, the people who answer the phones aren't the same ones running the tests. But the way things are going, pretty soon you'll call Quest (or any lab)  and get someone in India asking which Bird Flu test results you want :)

[jmjm530]

BB: it turned out to be someone else with the same name.
---------------------------------------
I didn't realize "beagle bailey" was such a popular name. Live and learn.

[GoofyDad]

My sense is that we oversimplify when we think of cirrhosis being just another ratcheting up of the fibrosis meter.

The second read of my bx was done by a liverhead who has seen his share of livers. He produced a 2 page report that talks about all kind of cr*p that does or doesn't support a diagnosis of cirrhosis. I didn't understand it, but there was enough mumbo jumbo to tell me it wasn't a straight forward progression of say water turning to slush turning to ice.

His final conclusion was that I don't have 'true' cirrhosis, but his associate who treats me writes cirrhosis as the diagnosis on all my paperwork. And my bloodwork and reaction to the meds say cirrhosis. So go figure.

In any case, there's no way he could have written the report he did, or make the diagnosis, from a non invasive test like an MRI.

And on the other hand, they can tell my liver is 'firm' by feel. Kinda makes you wonder why all the expensive science. From my medical text: "Your liver be hard, you be in deep kimchee, Kimosabe".

[Kalio1]

thanks for the input. I agree a biopsy is a must however having all the tests is superior if you can get them.  Cirrhosis can be missed on a biopsy in the early stages. If you had to choose or are a geno 2 or 3 and have a hard time getting one due to geno, a CT can pick it up, at least in my case it did. Definately get a biopsy if at all possible. If you can  get a CT scan and all the metabolic tests also all the better. Your analysis that it isnt just a "ratcheting up of the fibrosis" is what I was getting at but not wording right. My point isnt at all that anyone should forego a biopsy. The original issue was could you be a stage 3 and have cirrhosis like in West End's example. Probably at each stage there is a grey area where it is a judgement call as to which stage you are at.

[FlGuy]

Sorry you're going have to sit on this for a few days, unless you can get drawn over the weekend.  And then, waiting for the results!! How is Mrs. Beagle handling all this?  Sounds like family ambien time.  Sorry you have to go through this.

[Snookmiester]

LOL......I think the ole' "Yup, it feels stiff to me" gauge should be the standard!!!
I love that.. It really is pretty simple. If they can feel stiffness or hard liver so to speak, more than likely you have cirrhosis. If it feels soft, not.. Also same with spleen. If they can feel it, you got a back up in the liver.

As far as CT vs biopsy... No freekin way. I had all the blood work, which showned nothing. Everything within range.
Then Doc ordered CT with resolution, etc.. That too showed NOTHING.. Normal texture, normal size, etc..
Then sent for biopsy, that showed stage 3.. Without that, I would not have treated!! There isn't a Dr out there that will recommend a CT or MRI over a needle biopsy. They might recommend them if biopsy is not available, but they will always want to gauge damage based on actual interpretation of tissue by sampling...

[West Village gal]

Thanks Sue. We've got recommendations for David Feldman at St. Vincent's and also Jim's suggestions regarding Drs J and D.  So I think we'll start by trying to stay closer to home but I will sure add your guy to the list! Our primary guy is so terrific -- explains everything and really loves the part of his practice that is about his patients, not just the medicine -- that we have been spoiled.

[Forseegood]

I'm sure many of you read this...

http://www.hivandhepatitis.com/2006roberts/hcv/081506_a.html

[GoofyDad]

Snook says, "LOL......I think the ole' "Yup, it feels stiff to me" gauge should be the standard!!!"

Just my my luck! I pass the version of that test I want to fail, and I fail the one I want to pass.

[donAlfonso]

You'll probably never see this now, but I am in NYC, and my gastro is at NYU MC.  Name is Scott Weber at Concorde Medical on East 30 Street.  He's been very good regarding explaining things, is willing to take a lot of time with me, and has never denied any requests for tests, so I was getting a PCR monthly.  He's pretty available for appointments, although you usually have to call office and leave a message and wait for a call back from secretary.  Office is very corporate feeling, but he is not. He is not perfect, and I suggest being prepared with knowledge of the latest tx trends and a list of questions.

My complaint is with NYU, which is not involved in any current studies except for Infergen. Oh, and I don't like Weber's boss, Dr. Tobias.  

Hope you find someone you like.  Best of luck and good health to you.

dA

[West Village gal]

Thanks!  I have firsthand knowledge of both the group and the hosp.  so your comments were really helpful.  Thanks for following up.  Best to you, too.