Second Opinion in Ohio-HELP

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J's Mom
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Date Joined Oct 2008
Total Posts : 109
   Posted 2/12/2011 11:01 PM (GMT -6)   
After much discussion we have decided to seek a second opinion for our handicapped son's surgery. He is scheduled to have the remainder of his colon (suppose to be a small amount), his rectum and anus removed on 3/3/11. It is scheduled to be done at Children's hospital in Columbus. However, I just have a feeling in my gut that we should go talk to a colorectal surgeon. The surgeon that is doing it is the main surgeon for IBD, but I wonder (and am going to call Monday and ask) how many of this type of surgeries he has done. Being a pediatric surgeon, would he have done as many as an adult surgeon? We are so comfortable at Children's since he has had all of his 12+ surgeries (including heart surgery as well as his total colectomy) over the years done there that going somewhere else is scary. However, I keep reading that everyone says only go to a colorectal surgeon.
 
So my questions is for all of you Ohio folks...who would you recommend? Someone in Columbus or Cleveland? We live in central Ohio.
 
Guess I should add. J is 22, only weighs 85 pounds and mentally is about like a 2 yr old. So he could either be considered a child or an adult. He is our life and putting him through yet another surgery is very difficult. But, we need to do this, he still has some bleeding and we know the risk for cancer is  high.
 
Thanks for your help.

Post Edited (J's Mom) : 2/12/2011 9:23:02 PM (GMT-7)


Disneynut66
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Date Joined Apr 2009
Total Posts : 587
   Posted 2/12/2011 11:52 PM (GMT -6)   
If you want a second opinion definately go to the Cleveland Clinic. They have 96 beds in their colorectal surgery unit, so you can imagine how many surgeries they do. My doctor is Dr. Tracy Hull, I know summerstorm really loves her surgeon there and someone else here loved their cc surgeon. Hopefully they will chime in.

Good luck and I am sorry you are going through this. I work with kids with special needs and it is so hard when they have to undergo surgeries and I'm not even their parent.

suebear
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Date Joined Feb 2006
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   Posted 2/13/2011 9:18 AM (GMT -6)   
All CR surgeons at the CC are highly rated. Dr. Remzi's name comes up quite frequently but I'm sure any of them would be good.

Sue

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 2/13/2011 9:56 AM (GMT -6)   
Follow your gut and instinct and our "woman's intuition". This is so major and important you want to absolutely feel you not only made the right decision but in your mind have the best surgeon operating on your boy. Not to say your current Dr is not good...but there is always better too.

I know I/we were very happy we had such a good surgeon especially since there were complications for my husband once in there operating and nothing was the way it was supposed to be.

Good Luck!
64 yr old male --suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision in 6/10 to have surgery which was on 12/17/10 (permanent ileostomy - unable to have the j-pouch) and no longer in pain.

J's Mom
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Date Joined Oct 2008
Total Posts : 109
   Posted 2/13/2011 10:33 AM (GMT -6)   
Thanks for the responses. Anyone else have any surgeons names at CCF?

I plan on calling first thing tomorrow to see how soon we can get an appt. May need to cancel at Nationwide Childrens. At least this is not emergent this time, so we have some time to explore our options.

Yes mama's intuition has proven to be correct on many occasions the past 22 yrs :)

Christine1946
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Date Joined Aug 2008
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   Posted 2/13/2011 1:07 PM (GMT -6)   
     I don't know any surgeon's at CC since I am in NJ.  My surgeon trained at the CC and is head of colorectal surgery at the Univ of Pa Hospital in Philly.  I just wanted to say that I will pray for your son.  Sounds like he has been through so much already.

Disneynut66
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Date Joined Apr 2009
Total Posts : 587
   Posted 2/13/2011 2:25 PM (GMT -6)   
Scrap Girl's surgeon was Dr. Lavery. I hear Dr. Strong is also very good. Dr. Remzi is the head of the department, I believe so he is great, too.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/13/2011 10:34 PM (GMT -6)   
I did a lot of web surfing last night (was up until 1:00am) and found a website with patient comments/ratings as well as the CR surgeons credentials. I had jotted down the names, Lavery, Hull and Strong. I will add Dr Remzi to the list as well. Dr Fazio also had some good credentials. I think if we can get into any of these docs in the near future that will make me feel much better.

I is also reassuring that many of the CR surgeons trained at CCF as well. Guess we are lucky to be so close.

Thanks for all your help, well wishes and prayers. I will keep you posted.

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 2/14/2011 8:57 AM (GMT -6)   
My daughter is having a three step J-pouch done at the Cleveland Clinic. Her surgeon's name is Jon Vogel and I can't speak highly enough of him. He's young (40) and very highly regarded. My daughter's first surgery was January 19 and it went beautifully. Everyone we met at the hospital told us that Dr. Vogel is one of their best and very dedicated. So far - we're impressed. I believe Dr. Fazio is retired. Best wishes in making your decision and good luck to your son.

Disneynut66
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Date Joined Apr 2009
Total Posts : 587
   Posted 2/14/2011 10:53 AM (GMT -6)   
Dr. Fazio is retired. Dr. Remzi took his place. I don't think you can go wrong with any surgeon at CC. I know there are surgeons there that don't do it laproscopically, but I don't know if this is a concern for you. Also, some doctors do pediatric/adolescent patients, too, and some only adults. Dr. Hull does all. I know he is 22, but he is so small and it might be nice to have someone that deals with children due to his disability.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 2/14/2011 7:24 PM (GMT -6)   
I've been treated there for many years and you cannot go wrong with any of the doctors.

Dr. Remzi is hard to get an appointment with and yes, Dr. Fazio is retired from surgery. The names that have been posted on here are all very good and in my opinion close to AMAZING...

You may want to talk to a couple of them to see if their personality works with you...that is usually the biggest difference.
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/14/2011 8:37 PM (GMT -6)   
Well I cancelled his surgery that was scheduled for 3/3 at Nationwide Childrens. Called CC and I will need to call back in a couple of days once financial checks into his insurance to schedule the appt. She said it could be a month or so before we can get an appt. When I told the receptionist about my son she said she would talk with the nurses. She came back on and said that probably Dr Hull would be the one that would see my son. I then spoke to Dr Hull's secretary. Now it is a matter of getting his records from Childrens sent to CC. (Childrens medical records did not call me back today, so guess I will call again tomorrow). My husband and I feel we have made the right decision in doing this. The knot in my stomach has somewhat loosened. I really appreciate all the help from everyone. I will keep you posted.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/14/2011 8:41 PM (GMT -6)   
I just talked to Dr. Hull's secretary today, too. I have my pre-op/post op on March 23rd and my second surgery is on April 4th. Let us know when you meet with her and your impressions.

Good luck...I am sure all will turn out well.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 2/15/2011 2:48 PM (GMT -6)   
I don't know if Cincinnati is too far for you, but there is Cincinnati Children's Hospital Medical Center here that is very well known for its GI surgeries. And I am having my J-pouch surgery done my Jan Rafferty at Christ Hospital. She is the national ostomy magazine the Phoenix's doctor consult. And is rated one of the best GI surgeons in Cinci. But you really can't go wrong at CC either. It's what' they're known for. Good luck and I'll be praying for you and your son!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery scheduled 3/21/11

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/15/2011 11:13 PM (GMT -6)   
betsaronie, Cleveland and Cincy are about the same distance for us. Guess I really didn't think about Cincy. We got an appt at CC with Dr Strong on 3/3.
Are you from Cincy? Our daughter graduated from University of Cincinnati, College of Engineering last year.

BeautifulMess
New Member


Date Joined Feb 2011
Total Posts : 6
   Posted 2/16/2011 9:05 PM (GMT -6)   
Definitely the Cleveland Clinic. My family doctor recommended me to travel there to get a third opinion. I am in the Grand Rapids, Michigan area. It it obviously far away for me to go to, but they are KNOWN for their success for colorectal surgery for all ages.
I wish you and your son the very best!
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