Severe Hypospadias--need support!

Tienna - posted on 02/28/2012

Hi Melanie

I live in MD also. We have been seeing Dr. McDermott in Annapolis. He has been great! We have had 2 surgeries so far. I don't know if we will need more. I hope not. I have been wondering if we should seek a second opinion just for peace of mind really to know that everything is ok as we are told it is. Never having to go through this I am just unsure and want to know that things are as they should be. I was excited to see the post recommending Dr. Hanna. Depending on how things go with our next appt we may look into it.

Shannon - posted on 02/21/2012

My son had four surgeries when he was a baby to repair the same issues as your son. His last surgery was to repair a fistula (a hole that developed that he was leaking out of). After the last surgery, he has not had issues. It took a long time for his testicles to drop down after the hernia repair. The skin was so tight from them not being there for so long.

Melanie - posted on 02/17/2012

Hi Jane, I know you wrote this last year but I'm hoping you still check this site. I'm a new mom of a 2.5 month old who was diagnosed with mild to moderate hypospadias and chordee. Your post caught my eye because you mentioned that Dr Moneer Hanna is amazing and I've been looking for mother's recommendations for pediatric urologists. Although I live in Maryland my husband and I are considering driving to New Jersey to meet with Dr. Hanna. Can you tell me how you found Dr him? Was he also recommended to you? I've been searching online for pediatric urologists with great reviews and I haven't had much luck. Maybe I'm not searching correctly. Thanks! Melanie

I - posted on 01/31/2012

Hi Jackie,



My son had severe hypospadias with chordee. He operated with Dr. Medina at Weill Cornell in October 2011. He developed a fistula right after surgery. Dr Medina wants to correct the fistula but I am very worried about another surgery, particularly because the way described it seems that fistula repairs still require chateterization and it is quite an invasive procedure. I am trying to locate a good second opinion that will let me know if there are alternatives to surgery.



Back to your post, I think your feelings are much like mine. We want the best for the children and it is very painful to go through surgery and the fear that may not go as we want. Try to get a second opinion. I think having a person that is more detached to the situation will help you. I wish you good luck. Please reach out if you would like to talk more.

Tienna - posted on 01/11/2012

Hi Jackie

I'm in a similar situation. My son was born 6 weeks premature and is 20 months old. He just had his 2nd surgery and I am also not pleased wit the outcome. It doesn't appear to me there is any change from the first surgery. Our doctor did his hernia, chordee, hypospadia and circumcision all in the first surgery. The second was to fix what appeared to be tethering. I am also frustrated and scared of what is next. I would love nothing more than for this to be fixed so I can stop worrying. I am also looking for answers on what to do next. I know this post doesn't help or provide advice, but I just wanted to express that you are not alone. Thank you for your post.

Amanda - posted on 05/26/2011

Jackie. I have 2 pieces of advice for you and I don't like to give advice. 1. Visit heainfo.org and get on the message board. There are many adult men with HS and moms on the board. They are very direct, helpful, supportive and amazing. 2. Get a 2nd opinion. My son is 8. Just had his 7th surgery last week. He was born with penopubic epispadias and chordee. Only 3 of the surgeries were for the ES and chordee. The other were for incontinence. Either way, his Dr. is amazing and we never had any concern about his treatment. There are many wonderful doctors in the states that are amazing with HS kids. Ask on the HEA message board. I don't know where you live but let me know and I'll do some digging for you. Good luck. I know how hard this is. But, 7 surgeries later and me, my son and our family are still standing and still smiling.

Jane - posted on 05/26/2011

Hi- I'm not sure where you are located, but I would suggest if you can get to New York or New Jersey you should see Dr. Moneer Hanna. He is an amazing and gifted pediatric urologist and can help you. My son was born with severe hypospadias and chordee which he corrected in one procedure with no complications and no follow-up surgery. He can help you. Google him and get to Dr. Hanna! I seriously worship him. He is one of the best in the country in doing these surgeries.