July 3, 2018 at 3:05 am #1813
I semi recently posted on this forum seeking advice on my next move, as I am about to be 25 and have been living with a stricture that has gotten progressively worse over the last couple years. I am at the point where some course of action is going to be necessary, as the homeopathic remedies have not yielded any positive results (besides bee pollen which helped alleviate symptoms for 2 years give or take). Stream has slowed, and I live in pretty much constant discomfort.
What is everyone’s experience with DVIU’s here? Obviously nobodies was the end all cure, as the success rate is garbage long term, But I’m thinking its my next step. I’m at the point where I know I put this off far too long and fear the worst (damage to kidneys, bladder etc). I think everyone whom has experience with a stricture knows that not only can it be painful, but psychological as well.
My buddy from high school is a urologist, but seems to think that the reconstructive surgery is reserved for patients who have gone through multiple failed prior procedures. Who knows what truth there is to that, because I have yet to get an opinion from a reconstructive surgeon. He advised that he doesn’t know any surgeons that specialize in urethral reconstruction, although they’re obviously out there. Geographical location/distance being the main restriction for me to meet one of these fellas.
But before I ramble too far, this post is more specific to my questions concerning DVIU.
1 Do they put you asleep for the procedure, or is it local?
2 Discomfort level 1-10 (Cystoscopy for me was extremely uncomfortable, pain wasn’t really a problem).
3 Did this make your situation worse, long term?
4 Would you recommend a DVIU to start, or did you find an alternate route better?
5 What was your recovery timeline? Is this something I could do on a Friday after work, and be good to go Monday for work?July 3, 2018 at 1:20 pm #1814SteveParticipant
DVIU is just temporary. Urethroplasty is generally long lasting and high in the 90’s % permanent. I had two DVIU’s and one Urethroplasty. I wish I had the Urethroplasty from the start. Today I pee normal and do not worry for the future. My operation was 10 weeks ago and I was fine from the beginning. Healing took about 5 weeks. Still a tiny bit sore.
DVIU’s required a catheter for 3 to 5 days. Only slight improvement. Lasted less then six months.
Have you had a Xray or a Cat Scan for stones? I had a sediment stone in my bladder that blocked my urethra. Doc missed it.
Hope this helps.
SteveJuly 3, 2018 at 4:17 pm #1815heyitsmeParticipant
I’ve had 2 DVIU’s and 1 urethroplasty. There is no question in my mind… skip the DVIU and go straight to urethroplasty. Make sure you select a surgeon who specializes in urethroplasty and has hundreds of procedures on his/her resume.
It’s truly life changing. You won’t regret it.July 3, 2018 at 10:58 pm #1817
I had a DVIU in 2006 and dilation and I self dilated with no issues until May 2018 when I started noticing a narrowing.
I had another DVIU and dilation in late May to open it back up and have been dilating since with no issue.
I’m hoping to get some more years out of this.
I saw a reconstruction urologist this morning at Wake Forest. He gave me some options and we agreed I would play it by ear for now and I would call him if I notice any changes then we will do some testing to determ8ne if urethroplasty is best for me.
At your age, I’d quickly get to see a reconstruction expert ASAP and review your options.
What state are you in?July 3, 2018 at 10:59 pm #1818
BTW- I am 47July 9, 2018 at 7:36 pm #1821
I am in NY (Western NY). Thinking about reaching out to Dr. Zhao (NYC). His name has been dropped a few times on this site. I Will need to see if my insurance qualifies etc. I’d rather only have to go thru something like this once, and have it cleaned up for good.
Life events getting in the way at the moment, new job, buying a house. I’ll have to tough if through a few months at least.July 10, 2018 at 2:13 am #1822
I would go ahead and call for an appointment.
It often takes a little bit of time to get an appointment with the specialist.
It will likely make you feel better to discuss your options. Plus, if you see him now you will likely be able to see him much quicker the next time should you need a quick appointment later since then you’ll be considered an established patient.July 10, 2018 at 3:32 pm #1823
I appreciate the insight. I went ahead and contacted them. I should be hearing back within 24 hrs to schedule an apt.August 28, 2018 at 5:14 pm #1843
I had my appt with Dr Lee Cheng Zhao at NYU Langone back on August 21, which included a cystoscopy.
-The scoping went good, much better than my initial back in 2014 at the local hospital, where they tried to jam the thing past the stricture, into my bladder.
-Flow tests of course showed weak stream, but I did empty my bladder (surprisingly).
-I will require a buccal mucosal graft Urethroplasty per Dr. Zhao. He told me I should have no problem returning to my desk job a week post op. He advised he does Urethroplasty’s 120 times per yr roughly, which would put it around 2 per week (which makes me very confident in his abilities, at a 90% success rate I might add).
Could anyone fill me in on what to expect here, for the following 15 days post-op? I’m hoping to have this procedure done on a Friday, then have the next 9 days off before returning to work. My hang up is a 1 hr flight to get back home, which will be tricky. I unfortunately can’t get additional time off of work, as it is a new job and this will be all the time accrued by mid October.
I talk on the phone for a living, what will mouth pain be like following the buccal graft? I’ve seen a lot of people post on these forums that they are planning on this procedure, but then never follow up. I always assume no news as good news on this forum, but I am hoping someone could help me out here with mental preparation.
I used to be scared of the idea of a surgery like this, but since I am 24, I have my whole life ahead of me and can’t wait to get this out of the way.
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