This patient support community is for discussions relating to urology issues, benign prostate disease, penis curvature, cystisis, pediatric urology, prostate, sexual dysfunction and urological cancers.
While serving in the Navy in San Diego, my third son was born and was noted to have moderate to severe hypospadias and chordee within minutes of birth. There were no other abnormalities noted at that time.
I was working as a surgical technologist with a specialty in ENT. After a few weeks, Mom and I met with the attending Urologist and explained that I would be leaving the Navy within weeks. He advised us to not have our son circumcised and educated us on his condition. He did some quick research and noted that he personally knew the local pediatric urology expert in our new area and could vouch for his expertise.
As you can imagine, when leaving the military and going into the civilian world with 3 young boys, our financial circumstances weren't great. While our son was still covered by the Navy, we sought out a quick appointment with the locally recommended surgeon. We were impressed with the local surgeon as he repeated virtually everything we heard in San Diego. He explained his plan and began testosterone injections immediately, in order to 'assist' growth for the surgery. When the next visit arose and he decided that the foreskin was attached to the glans (glands) and would need to be separated quickly so that it would have time to heal prior to surgery, he reached down and "ripped" the foreskin from the glans (glands) without any preparation (for either the patient or the parents). I know from my training and experience that medically, one must due what is necessary. Mom, however, was never educated in these facts and long before we made it to the car, I was informed that our local surgeon would "never touch my son again!"
After a few months, at one of our local hospitals, in which I was again employed as a surgical technologist, I happened to work with a Urologist that I admired and respected. Granted his specialty was not pediatrics. He evaluated our son and again agreed with everything we had already heard.
He performed a reconstruction at 3 months of age. To my current knowledge, the first surgery did correct his chordee, but after the formation of a fistula at the site of the junction between his existing ureathra and the graft, he wanted to wait for six months for things to settle down and then look again at our options. At six months, our son had surgery for a unilateral inguinal hernia with exploration of the opposite side. Both recoveries were uneventful.
At 9 months another attempt at reconstruction was had. Despite leaving his catheter in 2 weeks longer than planned, he developed another fistula at the same location as before. After all of this, it was decided that should we decide to do anything further, it should be postponed until after puberty. This was recommended due to the concern of scar tissue as well as the potential of a better result with further growth of the penis.
I maintained a great relationship with our operating surgeon for years and know he held great personal guilt over the failures of the surgeries. In hindsight, I feel the only reason he agreed to take on the case was the fact that the only local pediatric specialist had upset Mom and my personal relationship with him.
Now our son has finished his sophomore year at high school and is 16 years old. Recently Mom discovered his blog on MySpace and he is undoubtedly having issues with his hypospadias. Due to the lack of health insurance for the past few years, I have not pursued his condition. I expect a change in status shortly and am now concerned about surgery as an adult…not only the increased risk of complications, but also the risk of psychological effects. Mom and I will investigate counseling ASAP, but I don't have anyone locally that I am aware of that has any experience with hypospadias repair in the adult.
I apologize for the length of this missive, but I don't want to make a bad thing worse and rush off to surgery, if it seems we ought best leave things alone. For your understanding, the opening to his urethra is virtually at the base of his penis. The cosmetic look of his shaft is fine, while to appearance of the head of the penis is somewhat less than desired. To my knowledge the chordee was corrected with the first surgery. I am basing my opinions of cosmetic appearance on various journal photos and my 20+ years in surgery. I am quite realistic of what surgery can and cannot do and do not want to raise his hopes to have them dashed after a quite painful procedure.
Tell your son his surgical options and what happened to him in the past and support him in whatever he decides and inform him that if he decides to sue over the botched surgeries he needs to do it before he turns 19.Tell him that new technologies exist to save the foreskin and rebuild his urethra using other body parts such as the lining of the mouth or a piece of scrotal skin and you and his mother should also apologize for not letting him decide what to do in the past and for the unfortunate outecome.And reconstruction of the glans (glands)(head)of his penis might be possible also inform him of the probable loss of sensation from the surgeries he has gone through and any future surgery he chooses.Counseling for his condition will be hard to find not many have dealt with these issues before.
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