Has anyone had a urethra reconstrution

[brians2000]

I am suppose to go to virginia to meet Dr. Gerald Jordan later this month and I was wondering if anyone has had urethral reconstruction before.

[Lara]

Hi.
I hope someone can offer you some advice soon.
My 17yr old daughter needs to have a ureter reconstructed, not a urethra. She's already had to have one kidney and ureter removed, but decided not to have the other one reconstructed at the same time. I think she's wishing now that she'd had it all done in the one surgery. She'll probably have that done sometime in the next 12 months.

All the best to you with your surgery,
take care,
Lara

[butterfly6169]

Sorry to hear about your daughter having problems.
What is the reason for her reconstruction?

I have been having issues for almost 30 years with my kidneys and for the past 10 years with my ureter tubes obstructing. They are not obstructing from stones (which I've had way to many to count) but they say from scar tissue. I've also had numerous stents in.I had my first UPJ repair 10 years ago in which they had to an open repair. And recently I had a 2nd UPJ repair they did a ureteral endopylotomy which failed. My new doctor said that it should never have been done on someone who has had previous kidney surgery,now I'm going to be going in for a 3rd repair. I'm on my 3rd stent in 4 months because without it my kidney becomes obstructed. I also have other issues with my kidneys.

[Lara]

Hi butterfly,
Thankyou.

What was the reason for the original surgery which caused the scar tissue, if you don't mind my asking? I do worry about these things with my daughter.

We didn't find out until she was 16 yrs of age, but it appears she was born with malformations in both left and right kidneys and also she had two megaureters. The megaureters act like a reservoir. I was pretty shocked to see them actually. I had no idea they could be so large.

The left kidney that she had removed this year was totally non-functioning, and the surgeons reckon it's been that way since she was born. Huge shock to me, 'cause she's never been ill at all in her life with anything to do with kidneys until last year. Because that left kidney wasn't functioning at all and she had a megaureter there on left side as well, urine would escape back up from the bladder and pool there all the time. There was no pressure coming from the kidney to force the urine down the ureter into the kidney. It was working as backflow bascially. They used a stent to drain that prior to her surgery to actually remove the ureter and the kidney. She'd been putting off having surgery because she's been trying to finish year 12 at school and with all these problems going on it's been very difficult. Then in May I think it was, she had fever and symptoms and went to doctor, was given test, given antibiotics and sent home. In a matter of only a few hours, we were in emergency and she'd developed septicaemia and was a seriously ill young girl indeed. After a week in hosp. on IV antibiotics and other things, they decided to place stent temporarily until her own surgeon got back from holidays. Stent was placed and she came home and surgery was scheduled for end of June. Weird thing is that the stent had apparently failed anyway, it had recoiled and detached from the bladder so was pretty useless. All gone now though.

The right kidney, which is the remaining kidney is malformed but it works. (thank goodness!) All of these problems she's had/having are structural really and congenital, rather than her having actual kidney disease. The right megaureter will need to be taken out and reshaped to reduce further infections and pooling of urine esp. now as she only has the one kidney left and it's far from perfect. I guess they could put a stent in temporarily if infections continued, but in the long run she'll still have to have it fixed. She certainly won't be able to have children in the future the way it is now, so she's been told. The main thing for now is warding off any infections 'cause of her megaureter so that she doesn't get nephritis or septicaemia again.

You've had 3 stents placed in 4 months? wow. That's a pain! How come they don't last very long? Are the actual stents getting blocked too??

When I checked out the stent they used on my daughter, I found a lot of different types. The one they ended up using was too small and thin I guess, but she's a tiny girl so maybe that's why they used one like that. I think that's why it recoiled and failed to stay in place. Just guessing. The surgeon was going to use a larger one but changed his mind at the last minute while in operating theatre.

All the best for the next stent. I hope that one lasts longer. Let us know when you're doing that. Take care of yourself,
Lara

[butterfly6169]

God it's a long and complicated story for me also. I feel bad for you and your daughter.
Mine started when I was 9 yrs. old with blood in urine. I had a kidney biopsy which found I have focal segmental glomerulosclerosis,glumerulonephritis along with a history of numerous kidney stones,infections, hydronephrosis and recently they found a cyst in each of my kidneys. I always had problems with my right kidney,until recently my left one is now acting up.
The UPJ is sometimes congenital but in my case I've had many test since I was little and they never showed my kidneys to be obsructed before. About 10 yrs. ago was the first time they saw the obstruction from within the ureteral tube. They did the first repair and I did good for most of that time but 3 years ago I started with more pain and the doctors just brushed it off.
As my husband said they are acting like they hope it just goes away. Well it hasn't so they did another repair, the endopylotomy but it failed. I gave up on the doctors who I've been seeing and went to a well known hospital. Now they said I need another repair open surgery but this time the risk is much greater because of the previous operations. There's a chance I can lose the right kidney. Now the left kidney is partially obstructed. They think it is caused from the kidney stones passing through the ureters causing damage (scarring) and from the many retrogrades the doctors have done.
They told me everytime they go up and put and stent in or remove a stone more scar tissue will form. So in a way they added to my problem in my opinion. It is really frustrating. I'm sure your feeling the same way.
The reason for 3 stents in 4 months was because the first one was temporary until the endopylotmy in which that stent was HUGE. After 6 weeks that stent came out (normal time to leave it in after surgery) then I ended up in the ER in a lot of pain, after a few scans they discovered the obstruction was still there so the doctor did another stent placement and I decided to get another opinion, in which I'm back were I started having to have another open repair only this time the latest scan shows damage to the right kidney. I also developed extra renal pelvis in both kidneys. I feel like I constantly have pressure in my kidneys like someone is pushing their fist into my back. My GFR is just under 60 stage 2-3 kidney failure.

Now to add to the mix my oldest son was born with hypospadius required 3 operations to correct this, my second son was born with UPJ obstruction (they found this with a routine prenatal ultrasound) he had surgery at 3 months old and my youngest started with kidney stones at the age of 12. All are doing good now. (Keeping my fingers crossed that they don't develop what I have but they have other things now).
My grandfather and brother also had UPJ repairs which they were definately a congential issue. The doctors don't know why this happens or why mine wasn't a congential issue. Anyway I can go on forever we have so many medical issues in our family.

Keep me posted. I am new to this site so I 'm trying to getuse to it because I'm inquiring about a few things at the same time. My mom has a brain aneurysm going in hospital in 2 weeks for it to be coiled.

Hopefully the doctors are wrong and your daughter will be able to children someday. I'll keep you in my thoughts and prayers.

[Lara]

Dear butterfly,
All the best to your Mum for her surgery. That must be happening very soon. I hope all goes well.

Lara

[butterfly6169]

Lara

My Mom had her surgery Tuesday and she is home now. It went well.

The doctor used 7 coils to seal the aneurysm. She is very tired which is to be expected.

She still has a long road ahead of her. She has to see the doctor in 5 weeks then in 6 months she needs to have an angiogram to make sure the aneurysm isn't leaking.

I want to thank everyone for all their support. It really helps to know there are people who care.

Thank you all!!!!!