Crohn's Doctor in NY - Recommendations/Views

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NY-CD
New Member


Date Joined Nov 2009
Total Posts : 16
   Posted 11/4/2009 11:18 AM (GMT -7)   
Does anyone have any experience with a good Crohn's doctor in NY, especially one with a Mt. Sinai affiliation?  In particular any views about Peter Legnani would be most appreciated.  Many thanks...
 
 

alljns
Regular Member


Date Joined Sep 2006
Total Posts : 115
   Posted 11/4/2009 1:10 PM (GMT -7)   
Ive been using Dr Daniel Present (212 861 2000) for the past 12 years. He supposed to be a top dr. for crohns, but I'm not sure I would reccomend him. I never feel like theyre on top of the patient and know anything without looking at what was written in the chart. It may be more benificial to find a Dr. who actually knows and remembers you and your ailments.
Good Luck. 

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 11/4/2009 2:27 PM (GMT -7)   
If you are in NYC - Dr. Johnathan Potack at Mt Sinai on 99th st is good and specializes on CD and UC.  If you need info on him let me know.  I used to use Dr. Douglas Dietrich but he is more for liver problems.  I have recently switch to Dr. Potack and I am happy with him.

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Starting Remicade Nov 2009


NY-CD
New Member


Date Joined Nov 2009
Total Posts : 16
   Posted 11/4/2009 5:45 PM (GMT -7)   
JavaJay- Thanks for your post. Yes, I haven't met Dr. Potack but have met some of his colleagues in-house at Mt. Sinai. I was leaning toward using an "outside" doctor because I'm wondering how accessible the faculty-practice associates are on a day-to-day basis. My ipressions is that they are really up on the literature and latest research, but that obviously means traveling to conferences, doing research and teaching too. Hasyour experience been positive? Would love to hear more about Dr. Potack too. Thanks

alljns
Regular Member


Date Joined Sep 2006
Total Posts : 115
   Posted 11/5/2009 9:44 AM (GMT -7)   
Dr. Present is also with Mt Sinai hospital. I have the same issue with him as well that he's not always accessible. It seems like thats the tradeoff - If you go with a top Dr. thats involved in research and lectures you lose accessability but have the advantage of the latest research and plenty of experience.
Is it worth it?? I've been pondering that question for quiet a while, and the answer is different everyday.
 

Post Edited (alljns) : 11/5/2009 8:48:31 AM (GMT-7)


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 11/5/2009 9:54 AM (GMT -7)   
I had the same problem also. Dr Deitrich was on the best doctors list and when I first started seeing him my appointments kept getting cancelled because he was out doing seminars.  The I would have to wait another 3 months before there was an opening.  The flip side was that he is good.  Eventually, since he didn't specialize in CD, he recommended Dr. Potack who does specialize in it.  I have been very happy with Dr. Potack.  He really listens to his patients and works with them.  He was hesitant about starting me on Remicade but I talked him into it.  He then thought about doing a colonoscopy to see if there was any inflammation going on.  I told him that I was hesitant about doing it and that I felt that there was because of symptoms I was having.  Instead of going for the money with a colonoscopy he did some bloodwork that kind of comfirmed there was inflammation.  So far, he is my favorite GI I have had.

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Starting Remicade Nov 2009


Ellag
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/16/2010 8:52 AM (GMT -7)   
Hi Everyone,
 
I have been following Dr. Legnani & Dr. George for the past 10 years, I'm pretty happy with them and not with the way my body has been responding to medications.  I have been on all medications possible and multiple surgeries. My fear right now is will a doctor that you see for so many years think outside the box when it comes to new things that can be done. 
 I actually just heard about Dr. Present and called on Friday to get an appointment, I was told that he doesn't accept any insurance plan and after giving the receptionist all my history she told me that he will evaluate if he will see me.   Today i was told that he will see me in April.  I know i read few earlier posts which mentioned that he was hard to reach and didn't remember patients without charts, but asside from all that if i'm looking for a strong second opinion can someone tell me if he is the right person.  Can someone please tell me something about him.  All responses greatly appreciated.

NewToCD
Regular Member


Date Joined Jul 2008
Total Posts : 57
   Posted 3/16/2010 11:42 AM (GMT -7)   
I see Dr Lloyd Mayer at Mt Sinai. He got me into remission very quickly & is very patient. I believe he is head of immunology & gastro. I know he is very involved with CCFA & their research.
Hope this is helpful, let me know if you have any more detailed questions

CDDad
New Member


Date Joined Mar 2010
Total Posts : 1
   Posted 3/18/2010 11:54 AM (GMT -7)   
I have been seeing Dr Present as my 2nd opinion / specialist for my Crohns.  I was refered by my coworker whose wife see's him.  I still have my local GI doc too.
My first appt was last Oct, and they schedule more time and it costs more for the 1st appt.  They make you pay right after, but they give you the forms for your insurance.  I just mailed mine in and got reimbured - no problem.
 
I just saw him again last week for a Chromoendoscopy.  My local doc does not do it, and Dr Present recommended that to help find dysplsia in the colon.  Actually his partner, Dr Marion did the procedure, but I had a short appt with Dr Present right before - and after to review the immediate findings.  Again, I paid right away and the price was in line with my expectations. 
 
Dr Present is very nice.  He is older but that makes me think more experienced.  He made some good suggestions for my case.  There is not a magic bullet for Crohns or UC that they have, but just getting a 2nd opinion from such a highly regarded doc is worth it for me.
 
-Joe
23 year Crohns
2 Surgeries (one at Mt Sinai)
Humira, Pred, Asacol, Protonix, low dose codiene.

momofgirls
New Member


Date Joined Mar 2010
Total Posts : 4
   Posted 3/19/2010 12:47 AM (GMT -7)   
I am new to this site but not Crohn's. I have had Crohn's for 22 years. I think 2 years longer but was diagnosed when I was 21. I went to see Dr, Marion because my regular GI doctor felt he wanted a top notch specialist to see me. The first visit in 2005, I brought my films from my latest smal bowel follow through which said there was no obstruction and Dr. Marion was able to see the obstruction right away. A few weeks later I was hospitalized where I work in NJ, the GI doctors knew about my case because I am a nurse who works in endoscopy there, however, after being NPO for 1 week and having a CT scan of my abdomen and another small bowel follow through, no one saw the obstruction. Dr. Shlein, my GI that sent me to see Dr. Marion called him and had me transferred to Mt. Sinai. After being NPO and on Hyperal for 3 weeks and 3 small bowel x-rays later, Dr. Marion went to bat for me and had Dr. Harris (specializes in IBD surgery) operate on me. He did a great job.
Skip ahead to 1 1/2 years later, the pain after eating, 1 to 2 bowel movements a day very painful and no appetite, my GI again sent me to Dr. Marion. Dr. Marion insisted I had my small bowel follow thru x-rays with a radiology group in Manhattan. He told me I was on too may pain pill and that was why I was feeling bloated, not able to eat anything even liquids and I should stop them. After I had the x-rays, Dr. Marion was away, so my GI called and got a copy of the report because he could not stand to see me in so much pain and suffering. It confirmed that I did have a stricture in my small bowe and was almost completely obstructed. My GI did not want me to see Dr. Harris right away because I already had short gut 5 ft of small bowel left from my previous 4 resections. After Dr. Marion returned, I called his office to get an appt. to go over the results and what course of action he would recommend. He did not come on the phone, but instead had his receptionist tell me there was no obstruction noted on the test and I should stop all the pain meds and I would feel better. I was confused. Was my GI, whom I had known then for 18 years lie to me. I decided to bring the films to Dr. Harris and let him give me his opinion. The report the radiologist typed said there was a stricture, it took 12 hours at the x-ray for the barium to go thru. I knew somethin was wrong because it usually goes thru in 30 mins. Dr. Harris did not read the report, he looked at the films and said no wonder your in pain, you have a stricture the size of a string in diameter and taking up about 8-10 inches. Long story short, I had another small bowel surgery with the great Dr. Harris and felt better for 6 months and have had flares from my Crohns again and now a possible small bowel obstruction again.

I just wanted to relay this story because Dr. Marion works with Dr. Present and my GI trained with him and felt very comfortable sending me there; however after he treated me that way, he rethinks who he sends there for a second opinion. I am still on pain meds for this horrible disease, It is like a punishment every time I eat, my stomach hurts so bad. I have lost 20 pounds over the last 4 months without trying and I would not wish this illness on my worst emeny. Beware of the specialists you go to. I prefer my small town GI, he is comfortable telling me when he can't handle a situation or needs a second opinion. I feel he is not full of himself and thinks he is always right like some specialists get in there head. As a side note, I know this is long, Dr. Marion could not stop telling me how he took care of Mary Ann Mobley, an actress who also had Crohn's and was on a television special about her. I respect that he took care of someone famous but that does not mean he knew me in hte sense of if I was addicted to pain meds or not. I just stopped working this Monday because of the nausea and pain. I needed something to help with the pain to work and carry on as a mother of my 2 children and my sick husband,

Sorry this is long and I am new to this site, but thanks for reading it.
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