Posted , 14 users are following.
Good afternoon, all,
I am fairly new to this world. I'm about 50. I've been reading through this forum about all the different interventions available to treat BPH. I had no idea there were so many options out there.
The last couple of years, I've slowly experienced worsening symptoms. I went from sleeping through the night up until a couple of years ago to waking up to use the bathroom once or twice a night a few times a week...and have had an uptick in that recently. I am looking for a urologist so I can get a start can figure out a proper diagnosis. Are there any specific questions I should ask from the start? Is there a standard treatment hierarchy that most urologists go through? Are most of the options like PAE, HoLEP, FLA, and others usually reserved for those who have tried several different medications first?
Mainly...what advice would you give to someone who is just starting this journey? What do you wish you knew when you first started?
Thanks so much.
1 like, 43 replies
kenneth_42676 sasquatch
Posted
It’s pure Hell on earth ....
bob31550 sasquatch
Posted
Also new on this journey. Learned that I had nocturnia, from drinking too much liquid. My Foley bladder bag was doing 2+ Liters from midnight to 8am. That's why I was urinating at night. Nocturnia is not a disease, from what I now know. However, drinking too much liquid at night along with spicy food triggered my initial bladder blockage --- without warning. Never drink a lot of any liquid at one time, was the take-away. Also, key info: Squat to defacate, sit to urinate.
sasquatch bob31550
Posted
richp21 sasquatch
Posted
Hi Sasquatch,
A couple of follow-up comments to some of the previous posts. I took Flomax for quite a while, and had pretty bad side effects: severe nasal congestion along with a persistent cough.
A urologist will most likely not recommend PAE as the procedure is performed by interventional radiologists. My urologist is top notch for kidney stones, but even a year after my PAE he kept citing "facts" about PAE that were very out of date and unfavorable in nature. Glad I didn't listen to him about that.
I concur with TruthMatters. Haven't heard of retro being a possibility with PAE. It doesn't even make sense anatomically.
Main advice: Treat your uro docs and other docs as sources of info, but not as infallible. They can have gaps in knowledge, married to the one or two procedures that they have been doing for decades, and also a financial interest in them as well. Take what they have to say and do your research. This forum is invaluable in that regard. Then weigh the pros and cons of all your options and make a decision about how to proceed. No one solution works for everyone.
Rich
sasquatch
Posted
Many thanks to all of you for your replies! I really appreciate it.
That is interesting about the nocturia. I really haven't given it much thought about what actually woke me up. I assumed it was the need to use the toilet, but you're right; there could be another reason.
When I first started reading about things to avoid, I saw that antihistamines were on the list. It's truly a "pick your poison" kind of issue, as I suffer with allergies frequently.
Thanks for the heads up on asking for an ultrasound. Will most urologists do this anyway on a first visit?
Regarding PAE, FAL, and others, why don't urologists do these procedures? I mean, it seems like the procedures would/should be in their wheelhouse, as it were. As far as I can tell, there is only one office doing PAE in my state. I wouldn't have a problem traveling to get this (or other procedure) done if it meant having someone who is a practiced expert do it...but don't want to get ahead of myself here.
A few of you mentioned side effects with the drug options like Flomax and Rapaflo. Do they work reasonably well for most people? Some of the potential side effects could be non-starters for me, like stuffy nose, as that is a somewhat frequent thing for me anyway. I'm glad to know that the side effects go away quickly when you get off them.
Is there a treatment that is on the horizon that looks more promising than what is already available to us? The "silver bullet", as it were?
Thanks again, everyone, for your welcoming posts. This forum is fantastic.
glenn77 sasquatch
Posted
To answer your question about why urologists don't perform PAE, FLA (Focal Laser Ablation), those are procedures that require the special extended training and facilities that radiologists have. I know I wouldn't have wanted my first urologist guiding fine wires into my arteries, given that during a Greenlight Laser procedure, he managed to damage my external sphincter, leaving me permanently incontinent. Legally, I think any doctor can attempt to do just about anything. I think it's best to have a specialist who has trained as a fellow under another highly skilled and experienced specialist. As an example, the doctor who did my AUS implant does over 150 implants per year, while training other doctors who serve as his "fellow" for an extended period, imparting his knowledge to them.
richp21 sasquatch
Posted
No silver bullet that I am aware of. Let us know if you hear about one!
PAE and FLA are done by interventional radiologists ... completely different specialty:
Interventional radiology is a medical sub-specialty of radiology utilizing minimally-invasive image-guided procedures to diagnose and treat diseases in nearly every organ system.
What state are you in? I traveled several hundred miles to get my PAE for the same reason that you mentioned: to be treated by someone who had performed hundreds of the procedures and who had been highly(! ) recommended by posters on the forum who had been to him.
In my case, the flomax worked well re: the BPH symptoms, but I couldn't tolerate the nasal congestion side effects. Daily Cialis is an alternative that might have less severe side effects.
Rich
bob31550 glenn77
Posted
OMG, sorry to hear that permanent damage from your laser surgery - didn't know that could happen; thanks for sharing. It's a major reason why I'm not rushing.
When I was leaving the ER with my first Foley which was for a 2L "acute" blockage , and quite upset about my situation, a gentleman in his 80's or 90's was just arriving with a leg bag, so I asked the daughter, how long have he had this bag. She said, "ten years, but he got used to it. Not a big deal now."
Question: How do we research doctor's skills/experience? Is there a database?
bob31550 sasquatch
Posted
Re PAE. There's a forum thread on PAE with over 2,000 replies. The statistics there vary a lot from the "official" success rates, and there's a big discussion also about the discrepancy. I read a few dozen, starting from the newest.
I was "liking" PAE until I read posts that the "growing prostate" problem returned. Imo, the underlying cause of enlarging prostate needs to be answered first. Without that primary knowledge, imo, nothing really works.
My uro, in a clinic with 4 other uro's, beside a major city hospital, didn't listen, today, to my request for a prostate ultrasound (from suggestions by posters in this forum.)
Researching on the 'net, seems that only the latest-greatest Doppler ultrasound imagers are capable of cancer diagnosis, and CT and 3T MRI's are superior. Also, it's possible that the hospital doesn't have a high-end ultrasound or personnel.
The ultrasound is the least invasive, from what I read today.
Re: Silver bullet - there probably is. Am going to read up on what is done in Asia, since the death rate from prostate cancer is a tiny fraction compared to where I am.
Comments, anyone?
sasquatch glenn77
Posted
sasquatch richp21
Posted
Thanks, Rich. That makes sense.
I am guessing you went to Dr. Bagla for your PAE? What kind of results did you experience? I am in Oklahoma - I would definitely be willing to travel if meant getting treatment with someone who had experience rather than staying local to BE someone else's learning experience.
Thanks again.
sasquatch bob31550
Posted
"Question: How do we research doctor's skills/experience? Is there a database? "
That is the question. It is difficult to find this. I've always gotten recommendations from friends. We have a urologist who has fantastic qualifications, but the 3 people I know who have used him did not like his practice for various reasons. You can find "reviews" online, but pretty much anyone can write a review. It's ok to take a chance with restaurant reviews, but I would rather not with healthcare!
Good luck to you.
sasquatch bob31550
Posted
I've made an appointment with a urologist here. I will ask him for the ultrasound and hope that he is amenable to that. That is frustrating to hear that a large practice would not honor that wish. What was their reason for denying it? Did they want to try prescription options first, then move on to other options only if the medicine did not work?
From what I've been reading (mainly here), PAE does sound appealing, just because it is the least invasive option and could very well give relief. I hear you about hesitating because the prostate may very well start growing again down the road. At least with this, you could do it again and hold off on something more invasive until that silver bullet arrives, if ever.
glenn77 bob31550
Posted
There is no database. There can be "too much" experience when the doctor is getting near retirement IMO, as my first urologist probably is, being in his mid to late 60's. He graduated from a well-known medical school and served a fellowship at Cal Berkeley, a long time ago. He is one of 12 or more doctors at a large urology practice. Some of them are apparently excellent in robotic surgery, I'm told.
I think the key is to move very slowly when you have a BPH diagnosis, rather than rush to a surgical solution as I did. I had never been in retention, not had had a need for CIC. That doctor's list of things that could happen if I didn't have surgery scared me into surgery, and I will regret it as long as I live.
glenn77 sasquatch
Posted
Yes, the AUS is working out well so far, but it's only 9 months after activation. There's a good chance that I'll have a "do-over" some day, and there are things that can happen, such as pump failure, erosion, etc.
bob31550 sasquatch
Posted
She, the uro, stated, "What will the MRI tell me?" She didn't give a reason for ignoring my multiple sonogram requests. I'm surfing now for options and a way to get second opinions.
richp21 sasquatch
Posted
Excellent guess. I've had marginal improvement from the PAE. It has allowed me to stop taking any meds, which is a very welcome result. If my symptoms get worse, I will try meds again, and wouldn't rule out another PAE.
I know this is cart before the horse territory, but Dr B and staff were incredible, and I can recommend hotel and restaurants if you eventually decide to head in this direction, and other tips. I have a complete diary post of my experience at https://patient.info/forums/discuss/pae-with-dr-bagla-on-03-27-17-582060.
Rich
sasquatch richp21
Posted
richp21 sasquatch
Posted
Yes, that was one of the pros for choosing PAE.
To round out my post, Dr B said that maximum benefit would happen within 6 months. I've actually seen more improvement in the last several months .. it's been 18 months now. I've been meaning to do the IPSS questions to see how my score now compares to pre-PAE, 1 month post PAE, 3 months post PAE and 6 months post PAE. Just haven't gotten around to it. If it's really an improvement, I'll pass that info onto Dr B's office. Maybe it would be a coincidence, or maybe improvements can happen further out in time.
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