Has anyone out there had a "Prostate Artery Embolization??

William;  If you are only getting up once or twice a night then your PAE was a success.  Good Luck to You.

I'm happy this worked for you.  You cross your fingers and hope it works. Maybe doctor wanted you off Flomax because this was part of a clinical trial. 

Thanks so much for the great and thorough report. We'll look forward to the updates, and hope that your progress continues. Have you had any negative or positive sexual effects?

Neal

Hello everyone with a urination ssue.

I had my PAE on June 2nd 2015 at Inova in Virgina by Dr Bagla.

First I need to say thqat I also had a TURP in February 0f 2013 at Brighams and Womens in Boston.

It was indeed barbaric as Tarzan man mentioned above. It did little to help me and it was a totally awful experience that caused me severe pain for in urination for two months. They sent me home to Maine with no medication and no followup. What are they thinking??? Never do that again. Just horrible. At kleast they didn't maim me.

I have had nothing but absolutely terrible experiences with 3 urologists over the years. One of them was a sick sadist. I ended up with Peronie Disease. A bent penis. He also gave me two biopsy procedures without any sedative within two weeks of each other because my PSA was a little high. The first one was unconclusive and I stupidly fell for the second one. That would be a certain Dr Telsie.(spelling?).

The PAE procedure was a breeze, Only the first night was uncomfortable. I already have been experiening some relief. My stream is stronger for sure. I still have urgency. I'm optomistic.

This time they gave me meds to ease the reciovery and they have responded quickly to my phone calls post procedure. They even called me to day without a prompt to see how I was doing. 

  My main message is this: Don't trust urologists, do your research,

pick a Dr that has done lots of the PAE procedures, and take it easy for two weeks after since I popped my artery open by performing physical taskas 4 days after the procedure causing a severe black and blue from my groin to my knee and now it is also sore. The interior bleed stopped on it's own. (the incision is 1/8 of an inch...tiny).

Also suggest that you shave your pupic hair totally before the procedure.. The tape and dressing is brutal taking off otherwise. They shave you but only where the incision is.

  The other thing is this: Peeing at night, it has little to do with your prostate and a lot to do with your sleep cycle, kidney, pineal gland, and all the chemistry that has to do with your urine production while you are asleep. When we are younger we go to sleep and the urine production system slows way down as well. As we get older is doesn't seem to slow down as well. If someone can find a way to reverse this aging trend you can make a million. While this comment is totally anecdotal I firmly believe it. I know that with the PAE and other procedures we can reducing the number of times that we get at night but it may never get us back to when we where kids or young adults.

I believe this because I often only have to get up once or twice at night but during the day I might have to go every 15 minutes for most of the afternoon. I'm usually pretty good at night and in the morning.

The afternoon can be a killer.

Go figure.

Lastly the PAE was a breeze compared to the TURP.

Oh ya the PAE is done by Vascular surgeons not urologist. 

Urologist already hate Dr Bagla. I asked him about that.

The urologist will be greatly hurt when everyone starts going to see Vascular surgeons for this procedure. Trust me on that. 

One last thing...medicare and the supplemental pays for the whole PAE and it is far less expensive than a TURP.

Capt. Bill.  Stonington, Maine 

 

 

Bill,

i hope your PAE continues to show improvement as mine has. I rarely get up at night now. I don't have urgency and my daytime pee habits are what I would consider normal. Good flow, I can play 18 holes of golf without peeing unless I drink several beers which I often do. When I had my PAE a at UNC in North Carolina the Radiologist went in thru an artery in my left wrist. This eliminated any need to shave pubic area and it also seals/heals faster than going in thru the groin.

while my Urologist certainly did not tell me about PAE, he did not have any problems with me trying it. In fact he thought it was a good thing to try,

i hate it that you has Turp first. Unfortunately many of the Turp side effects are not reversible. 

I have been waiting about two weeks since dropping of my MRI to hear back from Dr. Bagels is this your experience with getting scheduled ?

Thanks lou

Cam here.  Do you mean Dr. Bagla from Inova.  If so, in my experience, that office is very, very poor communicating, responding to emails or phone calls.  

Can did Bagla do PAE proceedure on you?

Lou

Dr Sandeep Bagla of Inova Hospital in Alexandria, Virginia did my "PAE" on Sept. 10th, 2014.  Super nice guy- extremely smart.  The only problem is it "didn't work" for me.  I still get up 4 times a night to pee just like before.  Maybe you will have a better outcome.  I certainly hope so.

That is if I ever hear from him been waiting 2 weeks since MRI

What are you doing to help yourself?

Hi Lou; May I ask where you live???  Iam now scheduled on July 15th to have a "Urolift procedure" in  Illinois.  You can go to "YOUTUBE" and type in Urolift Procedure and watch a 2 minute video on it.  Iam very optimistic that it will help me.  Atleast I hope.  Its very frustrating to get up 4 times a night to pee.  I have to do something and hope the Urolift will be the solution to the problem.

Hi Chuck, I live in the DC metro area

That's why I went to see Bagla

I will look into your proceedure

I hope it works. Now I'm findings difficulty peeing prior to bowel movements do to large prostate I believe

Urolift looks like a good option

I hope it works for you!

Lou

Hi Chuck,  My PAE done in Nov 2014 was only partially successful. Although I am greatful for the relief I have had, I still have to take the flomax .8mg  to have the better result.  I decided to continue troubleshooting and last week had a cystoscopy to "walk down the tunnel" so to speak and see where the blockage still was.  I stopped taking the flowmax for 24 hours so I could see the situation under non medicated conditions.  What we found was that the urethra and sphincter muscle after the prostate were open and normal.  as we moved further and reached the prostate the channel narrowed almost closing altogether.  Moving futher upstream we popped out into the bladder and she turned the camera 180 degrees to see the bladder neck with the camera hose coming out of it.  We found that the bladder neck was shaped like a volcano and was being pushed up into the bladder by the prostate.  All this indiactes that while I had a 38% reduction in prostate size from the 1st PAE, I still had a prostate that was too big.  (It must have been a whopper before the PAE).  Now that I know the prostate is still too big, I am considering a 2nd PAE.  Have you had a cystoscopy?

Hi Bruce; My last cysto was in 2012 but Iam scheduled to have another cysto on July 14th and a urolift on July 15th.

No, but I was in contact with Nicole, the office coordinator, trying to schedule something.  She told me that she has almost no luck getting private insurance to cover PAE.  I found that the office doesn't  respond to emails or phone calls.  I am working with St. Louis University Hospital now where they do PAE and was told they are having success getting private insurance to pay.  I was impressed with my visit there this past Thursday.

Camster;  Just for the record I know Nicole as I used Dr. Bagla for my PAE.   Anyway I won't make a long story out of it buy my BC-BS policy would NOT pay a dime.  I ended up spending $7,000 out of my pocket plus all the travel costs, hotel, car rental, food, etc etc.  Probably cost me around $9,500 in total.  It didn't work for me so chalk that one up to "thats life". 

Chuck, that's why I tried St. Louis University Hospital.  Stephanie Lemons BSN, office manager, said she is having success with private insurance.  I thought I would let her try.  If she gets it approved, I would consider it a miracle.  Nicole really didn't make an effort or communicate with me.  Inova now charges $12000.  The hospital charge doubled from $5000 to $10000 in one year.  Dr. Bagla still charges the same, $2000.  St. Louis University Hospital charges around $8000 as per Stephanie. 

I thought Medicare paid for this

I guess I am wrong

I have a gap policy

WOW- that darn "inflation bug" must have really hit Inova!!!!!!!!!  Or could it just be "greed"??????  Ha-Ha.   I must be feeling ornery today!!!!

From all the places that I have called, Medicare will generally pay for it.  I'm not on Medicare yet. 

Maybe it is greed.  Bagla now uses a Magellan Robotic system for the PAE.  Maybe they need to pay that off. 

I just kept on calling them. I asked when their next opening was and I told them to put me into that opening. Then I sent in all my stuff, application and MRI. 

They told me at Inova that my medicare and supplemental will pay for it.

 

I was lucky I did not have any of the bad side effects from the TURP.

I don't like chasing people like this.  This just isn't good customer care.  So I decided to try someone else for the moment.

I also suffer from prostatitis, was wondering if PAE might help the pain I suffer with? Do you or anyone else know or know someone that was helped?

Thanks

Lou

The two often go together.  The doctor told me on Thursday that he likes the prostatitis to be cleared up with antibiotics first as best as possible.

Hi Bill,

I sympathize with what you went through with TURP.  I had been scheduled twice for that procedure, but chickened out both times, days before the great event.  This was 3+ years ago.  I did have infrared therapy about 2 years ago.  It did not really help that much, but at least there were no side effects.  About a year ago I found out about PAE.  My doctor had never heard of it, and my urologist did not recommend it.  I will be talking on the phone with Dr. Bagla on July 7th, so it will interesting to see where it goes from there.  I am excited about the possibility of having this non-invasive procedure that has resulted in a high level of success for most people.  I guess a small improvement would even be fine.  I don't know when I could be fit in, but first I have to be a good candidate.  So, I guess July 7th may answer that question, or at least get the ball rolling.  It would appear that you are benefiting, and hopefully will continue to see additional improvements in the near future.   

I am in Dallas, Tx  and considering PAE for my 55 gm Prostate... Would you recommend Dr. Isaccson at UNC ?

Pete,

I absolutely recommend Dr Isaacson !! He did my PAE and results are fantastic. I live outside of Atlanta. He has communicated with me frequently, answers all questions and follows up on any requests I have had. You will find him to be a very nice and caring guy.

 

William...did you ever consider Inova Hospital in Alexandria and Dr Bagla for the PAE procedure?  I've spoken to Dr Bagla and with Dr Isaccson regarding the procedure.  They both seem very knowledgable, considerate and willing to perform the procedure given my diagnosis from Mayo Clinic, Phoenix.  If you considered both, can I ask why you opted for Dr Isaccson?  I'm leaning the other way right now because BCBS has told Inova that they will cover the procedure...Dr Isaccson said insurance is not covering their procedure vecause it's a clinical trial....thanks in advance for your reply!  Michael

Hi Michael...I had the PAE scheduled w/ Dr. Bagla when my insuurer, Aetna, denied coverage.  Now I'm at square one - but I just spoke to Dr. Isaacson (who also performs the procedure outside of the trial) and am now leaning in that direction even though i live right next to Alexandria.   The cost at UNC is about half as much.  If it was covered I'd have gone forward with it up here at Alexandria.  They both seem capable.   

I talked to Dr. Isaacson last week.  He told me that he was having poorer results with enlarged median lobe, about 60% success.  He couldn't give me any answer why.  Dr. Pisco said that he was having no problem with the median lobe.  I had talked to Nicole at Dr. Bagla's office several months ago.  She told me that she was having poor success getting private insurance to pay.  She only had two with private insurance that would pay.  I have Highmark BC/BS and it is not covered.  Procedure code 37243 with diagnostic code 600.01 is considered experimental/investigational.

Arlington...yes, UNC quoted a lower price for the procedure to me as well.  They didn't offer the procedure outside of fortune trial but I felt comfortable with them throughout the discussion.  One reason I'm leaning toward Dr Bagle is that they use Hansen Medical's FDA approved robotic assisted catheter.  The robotic removes the doc from as much radiation and allows for more complicated, angulated artery access.  The robotic assisted unit is called Magellan Robotic System...keep me posted and I will as well...Michael

Good info... I'll investigate further.  Thanks a lot!

I had my PAE at UNC and I had a large median lobe. I guess I was lucky because my results have been nothing short of amazing. Prostate shrunk 40%. PSA dropped from 22 to 1.9.. Best of all I just don't have to think about peeing at all. No urgency and I don't get up at night at all.

Micheal,

UNC was closer for me and I qualified for the trial so it was free. Arlington was not doing trial anymore. I would go where it is cheapest for your situation. Both should be competent. I can only speak for sure about Dr Isaacson since he did mine. He was wonderful.

Thanks a lot William.  That's reasuring.  Dr. Isaacson set my expectation a little lower because I went in to acute urinary retention a year ago and have had to catheterize ever since.  Were you able to get off all drugs fo it?   Thanks again.

Arlington

i went off all BPH drugs 10 days before the procedure. I did have to self cath the week before. I have not taken any drugs now for 4 months. What a relief.

i did not have acute retention before but was getting close. I had to go to enmegency room for catheter several months before the procedure, I did not want to experience that again so I asked for catheters so I could self cath if needed. I had to self cath about four times in the two months before PAE. Hopefully never again.

Thanks William.  I was taking antihistamines for hives which sent me over the edge in to acute retention.  I'm glad you've has such success and am hopeful I will get significant relief as well.  The only good thing about self cath is when you compare it to the alternative!

Arlington,

many guys dont don't realize that antihistamines make BPH symptoms much worse. I had a sinus ear infection and Dr prescribed antihistamine. That was what caused me to have to go to the emergency room for my first catheter. It was 3am and I thought I was going to explode. After PAE I can now take antihistamine if needed with no retension problems. Good luck on your pursuit of a solution. I hope that PAE works as well for you as it has for me and many others.

 

Michael,

   I did use Dr. Bagla. He was great and I am peeing like a race horse.

Just 2 months post procedure I am so happy.

I felt improvement after the first week.

Some nights I sleep through or get up just once.

Frequency is 75% less and urgency is 98% gone.

No dripping, no nothing!

Bill...

Thats great news.  Nicole, Dr Bagla's assistant received approval from BCBS oF NM.  Looks.i,e I'll be visiting Virginia sooner than later I hope.  Just curious...was Dr Bagla using the robotic assisted catheter when you had the procedure? I know it's been recently approved by FDA...not that I place my trust in the Government or anything!  

Hi Michael,

   I have no clue on what he used. I didn't ask.

Just to tell you that urination has improved amazingly.

So many years of worrying about where to pee and then sometimes getting up 5 times a night which means poor sleep quality.

Funny side affect, my girlfriend says that my breath has improved 100% as well. Not sure how that might be connected but in the body everything seems to be connected to everything else. I think that ejaculation is a bit better also.

I had to be pushy to get a date with them. I had to have it sooner than later because of my seasonal business demands.

Good luck to you.

 

Hi Michael,

Did you get approval on the first try or did you have to appeal to the insurer?  My supposed top of the line Aetna plan denied coverage.  I had ben scheduled in June and the denied it within a week of the procedure date.  I'm currently trying to appeal w/ Nicole's assistance.

Arlington...

i haven't phoned the insurance company, but Nicole sent an email verifying that BCBC of NM will cover the procedure.  I plan on phoning them to make sure the coverage is "in network".  Seems that Aetna would cover the procedure especially if you advised houd be having the approximate $28K HoLEP at Mayo if the PAE isn't approved.  Maybe they'll start putting two and two together.  Good luck...keep us posted.  Michael

Thanks Michael.  Good advice.  You're definitely further along than me re insurance coverage.  Best of luck!

I had PAE done at Southampton University Hospital in November 2013 aged 62, all the usual flow problems, getting up 3 times in the night before the procedure. I had declined TURP because of the high rate of unwanted side effects. My Prostate was not overly large at 53g and the prognosis for a succesful outcome was good. The procedure took much longer than usual because I had an artery that was very difficult to navigate (a sharp bend)  but they managed it ok and there were no further complications. Flow appeared to improve by about 25% in the 6 weeks following the procedure which was useful but not great as it was a trickle previously. Most of the improvement should come within the first 4-6 weeks. The hospital reckoned there was no actual improvment in the flow tests but I think there was. The prostate however had reduced to 38g which was good. However as time has passed urinary performance has gone back to where it was - a slow trickle. Southampton reckon I'm one of the few where it doesn't work well because I have an enlarged median lobe. (protrudes into the bladder neck where it meets the urethra - a bit like a flap getting in the way) I have asked to have UroLift as an alternative but that appears to not work if you have a median lobe problem. I've just had a further cystoscopy done to determine exactly if the median lobe will preclude me from having Urolift, I hope it doesn't. I'm waiting to hear about that. If it wasn't for the median lobe issue I think PAE would have been a success. A reduction to 38g was good. There were no side effects at all afterwards, sexual function preserved. Would just like to be able to pee again properly! I first noticed I had a problem when I was 50. I have no regrets about having PAE, it was worth a try. Just would like to find a solution other than the dreaded TURP.

I talked to Dr. Isaacson at North Carolina University.  He said that he was getting about 60% success with the enlarged median lobe.  

My story is almost identical to yours althhough I am still better than I was before. My prostate was reduced by 38% and I have just scheduled my second PAE which will be in mid october.  I also has the cystoscopy and saw the median lobe protruding into the bladder.  Very apparant why I'm still on Flomax and only saw a modest improvement.  I will post in October how round two goes.

Thanks for the info Bruce, what was the size of your prostate before and after PAE? Also when did you have the first PAE procedure? Interesting that they are giving you a second shot with it - they must still think that good can come of it even though you have the median lobe problem. Are you having it done in the US?

I never had it measured and reported to me.  My doc used scans from before and after to  measure the reduction.  My 1st was in November 2014.  I'm having it done in Oakland, California.  Same doc as the first one.

Hi Bruce,

Good luck with your procedure.  When you say "protruding in to the bladder" do you mean actually going in to the bladder through the opening in the bladder neck or do you mean it is pushing against the bladder and bladder neck from outside the bladder but not actually going in to the bladder opening?  (mine is the latter and I also have a large median lobe w/ prostate around size 50).  Thanks for your help!

Yes.  The view from the cystoscope inside the bladder showed the bladder neck like a volcano with the scope tube coming out of the top.  It should look more like a funnel.  The prostate was pushing up from below.

Thanks.  Got it.  So it's a direct hit into the bladder opening by the prostate!

Thanks William  glad to hear your story and better yet, you are doing well. Am know in the shoes you wore before PAE and hoping to get as good results as you did. PAE done by Dr Bagla in VA two days ago and als know more time needed to see positive results. MEDICARE paid for the procedure @ Bagla's new consortium - Vascular Institue of Virginia.

How often did you cauterize then and did you also cauterize after PAE?

Agree- self cauterizing much better than emergency room and distending bladder is not an issue. Thanks for sharing. Cheers.. 

Hi Stinger,  I'm Lawrence and am considering using Dr Bagla in Alexandria VA for PAE myself. I have already had a previous bad experience with a PVP/TURP: The surgeon attempted to do a GreenLight laser PVP, but I also had a large median lobe which forced  the surgeon to abort the PVP and go to a traditional TURP 3.5 years ago.  Apparently I bled much more than usual too so he also had trouble seeing what he was doing because of all the blood during the procedure(s). -So now here I am, only 3.5 years after a TURP having the same BPH problems all over again. Fortunately that TURP didn't ruin my sex life, but it WAS brutal. I would very much like to know what date that Dr Bagla in Alexandria did your PAE, if you also had a large median lobe, if he has and used a robotic catheter, how long the procedure took, what your recovery was like, and most of all whether its working for you or not.   Thanks in advance for your overview  -Lawrence

Lawrence,

PAE done a month ago

- 2-3 rough days but things are much better now. Was catherizing and no longer use Speedycaths - still have them if needed. My post void retention less than 100. Cannot tell you about use of robotics but Doc Bagla use the latest technology - did both sides of prostate. Procedure took about 90 minutes to complete and about 4 hrs recovery. If you are flying / driving in, recommend you stay put in a hotel/with friends for couple of days to relax and recover - take all of the meds.

All is working well now and pee on command with excellent flow. Dealing w/UTI and antibiotics - due to self catherizing, not PAE. Doc Bagla is the top dog in USA on PAE - can't go wrong. I opted PAE over TURP and very happy with my decision. Bottom line: we are all different and your call on decision . Best of luck to you and Godspeed. Do the research here, gather info and decide. I have read here that TURP more complicated than PAE. Cheers Lawrence...

Dr. Bagla performed my PAE 10 days ago. He does not use robotics...but he has in the past. My procedure only took 45 minutes two and a half hours in recovery, his staff us tio notch...great people. I got a hotel room and stayed overnight with a friend, I had a Foley catheter put in so I wouldn't have to keep getting up to go to the bathroom while on the plane. Today all is well, flow stronger eaxh day. dr. Bagla is The Guy...good luck, and Godspeed!

I have read in a study published by National health institute USA, that smaller microspheres (the material used to block the artery) work better for the median lobe. Most commonly used are size 100-150 um , but the cases that used 50um size microspheres were

More successful in attaining the median lobe

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403829/pdf/12894_2015_Article_26.pdf

Did you ever get the procedure done. I live in the DC area and am thinking of going down to UNC in the next six months.

What has been your experience since you had the procedure done. I am planning on having it in about 4 months and have a cruise in Europe about 3 months later and wonder if that will be an issue.

Hi Richard,

There is nothing wrong with UNC, they are great, but so is Dr. Bagla, and he is located near Dale City, 25 miles down I-95 from you.

You may not yet have reached maximum benefit at 3 months. It can take 4, so you may still have some frequency, but it shouldn't be a problem. With your cruise.

Neal

The only reason I would use UNC instead is the cost, which I understand was a lot less down there. My trickle insurance does not cover this procedure so it will be all out of pocket. Thanks.

Hi Richard,

There is a possibility that Dr. Bagla could find that you have a qualifying condition that will have it paid for. That sometimes happens. Call him to check.

Neal

Someone posted that Medicare covers PAE if there is blood in the urine (hematuria).

Jim

Hi Richard,

Very little to no improvement for me after my 9/28/15 PAE.  I'm actually having to catheterize more now than I did before the procedure.  I may have been a tough case because i was on intermittent catheterization for about 1 year prior - after going in to acute retention due to antihistamines. Also, and maybe more importantly, I have an enlarged median lobe - and the docs have told me and it is very apparent from this forum that the procedure doesn't work nearly as well on enlarged median lobes.  The very small improvements that I had started to go away after about 8 months.  Having said all that, I believe in the procedure and am monitoring to see if they make any progress vis-a-vis the median lobe.  If you don't have an enlarged median lobe you may want to go for it.  Also, Dr. Isaacson was great!  Other than the results it was an overall good experience at UNC.  

Arlington;  I may have a suggestion for you.

I had immediate great results.  Then they went away. Dr. Bagla made some suggestions but my symptoms got worse.

Then my wife, who's an M.D. suggested, 'why not try to rehab the bladder like any other part of the body thats been injured?' So I began to resist the urge to urinate forcing my bladder to open up and hold more.  

Amazingly my urgency just went away and I was able to go 2-4 hours between urinating.  

Over the following week it was like getting my life back, not having to think about where I could stop on the highway, etc.  

But I stopped doing the bladder exercises.

Then I lost it and was again getting up frequently during the night.

Today I started 'rehab' again and I'm feeling great.

My wife does not think this can in any way hurt the bladder.

I keep a log of my recovery on a this forum under the title:  My PAE Today.

Good luck.

Jeff

 

Thanks a lot, Jeff.  I  tried that for about 10 months w/ no success re urgency.  That experience, along w/ some posts on this forum suggesting the opposite (that resting the bladder has allowed it to rejuvenate over time - often years), most notable from Jim, convinced me to go ahead and catheterize more - which I've been doing for about 6 months.  At some point I may go back to waiting longer - although a few hours after catheterizing the urgency begins and the urge gets progressively stronger and at shorter intervals.  Thank you very much for your response.  I will definititely check out your log.  

I've seen alot of posts about cathing.  I haven't tried it.

Have you seen a report of anyone who has permanently rejuvenated their bladder?

I've seen 2 anecdotally on this forum.  One was jimjames.

CIC (self-cathing) is definitely a good optio as a port in the storm while they are improving procedures as well as the side effect profiles.  I've found the coloplast compact male to work the best - and with very minimal to no pain. 

Its really unfortunate that medical care ends with the procedure.  

You can speak to your doctor later but, my experience is that, they are under alot of pressure to line up the next patient and you are pretty much on your own.

There is no good source of post procedure advice.  

Agreed...in general...although, in my experience w/ Dr. Isaacson, he was excellent in that regard both before and after the procedure.

Back in April I was hospitalized for 23 days. Had about a half dozen doctors visiting me daily. The day I left the hospital I had a 30 day supply of 8 different meds, and I was no longer eligible to contact any of them, except to make an appointment at their offices. The average wait time for an appointment was about 2 months. I did follow up with two of the doctors from the hospital but found new doctors for the rest. The hospital bill for the 23 days was $327,000. Luckily with Medicare and my secondary insurance my out of pocket was about $2,500. But leaving the hospital was going from constant care to none, instantly.

Right here. My story is more detailed in the self-cathing threads, but here's the reader's digest version:

Three years ago I had near acute urinary retention and probably was carrying around over 500cc of urine at most times. (They drained 2 liters out of me the first time I was cathed). My voiding was so compromised that I needed to push down on my lower belly (Crede Manuever) in order to get the urine out. As a result of the retention and resulting back pressure I had developed mild hydronephrosis (swelling) in both kidneys.

My doc, head of urology at a major teaching hospital, recommended TURP preceded by six weeks of self catherization (CIC) to decompress my bladder. I ended up deciding I did not want the operation and therfore continued CIC instead. When I asked my doctor if I would ever be able to urinate naturally again without the catheters he emphatically said that would be impossible given the prostatic obstruction. Either have the operation or stay on catheters for life. 

So it's three years later. I haven't had to cath for around 3 months now. My void volumes are usually 250-350ml which is normal. My residuals are between 20-100ml which is also normal for someone my age. 

Prior to CIC, my IPSS score was over 25 or over (severe). Today it is around 7 (mild).

All our bladders and prostates are different. Not saying that my story could become your story. On the other hand, don't think I'm that much of an anamoly and I'm therefore sure that many others can also rejuvenate their bladders to a significant extent regardless of what their docs tell them.

Jim

So the tax payers spent $327,000 to make you well (?) then abandoned you.

Thats the sad state of health care in the US.

I think they settled with Medicare and my insurance for around $80,000. I imagine they get to count the rest as a loss on their taxes. All of those costs are inflated tremendously on the bill. My feeling was it was fine with me as I survived and it only cost me a few thousand dollars. Same with all my meds. I think I have gotten $40,000 or so worth of meds for a few hundred dollars in the last 8 months, because I have a prescription plan. My plans run about $8K a year for me and my wife. In the US you must have healthcare if you have any assets worth preserving.

 

so how did you do it? I am sure it was more than self cathing? Kegals? Please let me know. 

No kegals. Just self cathing. Check out the self cathing threads for more details. But in a nutshell, I tried my best to keep my total bladder volume under 400ml at all times. Total bladder volume is the sum of a natural void plus whatever catherized volume immediately follows it. If I noticed the volumes getting higher than 400ml, I simply increased the frequency of CIC until they were below 400ml. What this did was to decompress my bladder, allow it to rest and regain tone. It was a gradually process with some ups and downs over a three year period. I started cathing 6x/day and now as I've mentioned I don't have to cath at all.

After about six months I periodically challenged my system by going off the catheter for periods of time, sometimes a day, sometimes a month.

During these challenge periods I only did "test" caths to make sure the volumes weren't too high although I didn't always adhere to the under 400ml rule. Since my bladder wasn't quite up to speed yet my frequency increased to compensate for the lack of cathing. I also ended up straining some to initiate voids and often had to do natural voids from a sitting position leaning back in a chair. I also did some "tapping" on the lower abdomen to stimulate natural voids. When this became too much of a PITA I went back to an agressive 6x/day cath schedule and gave my bladder a real vacation. 

I did several of these cycles until all of a sudden, without cathing  there was no straining, no tapping, just normal voids with acceptable PVRs.  I liken these cycles of bladder rest/bladder challenge to easy days/hard days at the gym. 

Jim

Wonder how things are going with you in the past 12 months since this was posted.

Rick

Bill how are you doing 2 years after your PAE---still peeing like a racehorse?

Rick

William, are things still good with you 2 years after having PAE?

Rick

Jim, This is a remarkable story. YOu must be very blessed. I can see that you are,as you have helped so many others.I would like to know it you also had an enlarged prostate along with your bladder problem? same as me.Do you think by doing CIC you were able to get thru the obstructed prostate an have NV?

thanks so much JIm,

frank

Frank,

Yes, I had (and still do) have an enlarged prostate that obstructs my urethra. What CIC did was to rehabilitate and strengthen my bladder so it was strong enough to push through the obstruction. But all cases are different, so that doesn't mean CIC will help everyone in the same way. For example, I never went through a long period of complete retention, as you are going through. That doesn't mean CIC will not help you, but as I said, the results are going to vary person by person. 

Jim

Jim, Your problem is a remarkable one. Did you do any exercise or anything besides CIC to help get thru the prostate obstruction?

Thanks 

Jim.

Hi Bruce,

How did round 2 go?

Thank you,

Katey