Personal PAE at UNC Experience

Thanks Neal - I can always count on you to help and I appreciate it very much. Sure enough when my meds ended yesterday I went into retention during the night. I took a 25mg prednisone pill which kicked in after a few hours and peed for 5 minutes straight. From what you write here I may have to go back to self cathing until the PAE starts to show progress. I still have had no pain at all and wonder if any necrosis is going on as I should feel something. Thanks again. Neal

Does it hurt to self-catheter?  If so, how much pain?

I learned to self-cath after a servere retention event following GL procedure sent me to the ER at 12:30 a.m.  I found it only mildly uncomfortable, no more than a 1 on a scale of 10.  Conversely, being in retention was close to a 9, I would say.

Hi Dennis - no it doesn't hurt at all once you get used to it. In fact it will restore your bladder tone to full health over time to the point you don't need to do it that often. There's a guy on another thread here who teaches how to do it (jimjames). He taught me evrything and if you want I'll give you the link. I had hoped to stop sefl-cathing now but I guess not for awhile till the PAE works its magic. It's all in the technique and choosing the right catheter. I can help you with that if you wish. Some guys who refused drugs and surgery for their BPH just self-cath. There are some who had lost most of their bladder tone due to BPH but by self-cathing initially 6 times a day could restore full bladder function to where they just self cath once  a week. I admire them!! Good luck. Neil

I would add, I would much rather be self-cathing several times each day than be living with the total incontinence I have.

Neil, yes,could I have Jim James, link?  I am a little confused, how is it that a person can self catheter only once a week?  Are you saying that he can urinate without the use of a catheter, then only once a week use one? That would be great if I could do that!  Mahalo, for your help.  Dennis

Glenn, yes, it is very uncomfortable as we both know. Not being able to empty the bladder, feels kind of incomplete, then before you know it, you have to look for a restroom, to do it all over again!

Hi Dennis - I thought that too a few months ago but then I learned about CIC which stands for Clean Intermittent Catherization. So it is for people like us who can still pee ok but are not emptynig our bladders. Over the years as we build up more and more PVR our bladder continues to lose its ability to empty or tone until we end up with a failed bladder ( and possible kidney disease ) and then need a permanent catheter. So as BPH progresses and makes it more difficult for the bladder to empty fully we can help it keep its tone by self cathing to keep the PVR near zero. For people like me with a PVR near 350ml I should be self-cathing 4 times a day but I don't because I pray that the PAE will open up my urethra and let my weakened bladder muscles empty it. By emptying it every day the muscles rgain their strength and then you have to cath much less - maybe just once a week or not at all. jimjames gives a great description at this thread:" Self Catherization. An alternative to Turp, Greenlight, Holep ...? ". He is a great teacher and will answer any questions right away. Also I started a thread a while back for help self-cathing and got a lot of help. Here it is: " New to Self Cath ". Good luck. Neil

I am not sure this will help anyone here having to cath. once and awhile to clean the bladder. My experience started several years ago when I was not emptying my bladder completely and heard of a method some individuals were using to avoid Cath. After a warm shower turn the cold water on and let the spray hit your lower back for a few minutes. Usually this will release the fluid retained in your bladder. It works for me. I have not had any bladder retention problem since starting this procedure years ago. It also helps with lower back problems before bedtime.

 

Neil,  you don't know how much I appreciate your comment.  I was under the impression that the bladder, once flacid, will not regain its strength!  I felt a sense of hopelessness, about my situation.  You gave me hope, about urinary retention problem.  I  want to learn more about CIC.  Do you have an email address, that I can contact you with?  I took your advice and went to JimJames thread.

WOW - thanks Ed - I will try it right now and let you know how it works for me. Did it work first time for you? Neil

not sure Neil .. it was quite a few years ago. Works like a charm for me. I have finished urinating and then taken a shower and followed that with the cold water and have passed quite a bit of urine when I should have been empty. Save me from going back for a cystoscopy again. Hope it works for you.

Hi Dennis - I am glad I could help but the real experts on CIC are jimjames and johnclen on the other thread on self cathing. I am still trying to master it bt now consider it a survival skill for the rest of my life. Learning to self-cath was not exactly on my bucket list but it is now - strange how things go. I will send you a private message with my email and will be happy to correspond. Good luck. Neil

Hi Neal - have you worked out a strategy yet with Dr. Isaacson? Did your MRI show any necorsis? How are you doing? Thanks. Neil

It looks like I will be trying to get another PAE in November... it looks like I got about half as much shrinkage as I should have from the first one, so if I do that well the second time. . .

Neal

Did you have a 3T MRI or just a regular one? What does your uro think of all this?

Neil

I had a 3t and sent it to Dr. Isaacson. He read it and recommended second PAE. UROLOGISTS are frequently not reliable advisors when it comes to PAE. PAE is done only by interventional radiologists, not UROLOGISTS, so UROLOGISTS make no money on it. Therefore, they recommend it "very infrequently".

Neal

Can you tell me a bit about the 3t mri - how long did it take and did they also put an ultrasound probe up your butt? (I am suffer from claustrophobia).

Also I am curious why he thinks a second PAE will help? Are there additional arteries now that branched off, or did the original embospheres dislodge? Did he tell you any details? Thanks Neil

Hi Neil - I researched prostate MRIs recently and as I recall:

There are 2 strengths of MRI machines 1.5T and 3T.  The 3T is better, giving improved resolution.

With the 1.5T machines, they always place some sort of detector internal the rectum for the prostate studies.

With the 3T machines, they do it both ways; detector sometimes internal to rectum, sometimes outside of rectum.

I think that I would prefer the external 3T approach.

I am claustrophobic.  However, I find that the "large bore" MRI machines are infinitely more tolerable.  The internal diameter is much greater.  Also, the length is shorter, so usually your head is outside the tube, or close to it.

I always tell them to turn up the ventilation air through the machine to max, which really helps.

Although severely claustrophobic, I have never had a problem with the large bore MRI (great machine).

I am not 100% certain, but I believe that 3T machines are available large bore, if you can find the right hospital.

They also have "open" MRI machines for claustrophobic patients, but I could not tolerate it at all.

Mark

Thanks Mark for sharing that info with me. That is all new to me so it will help me when I look for a machine. I had an MRI years ago for my shoulder in an old machine and had to place a face cloth over my face to keep from looking at the top. It did help but it was a difficult experience. I will definitely look for the large bore machines. I can tolerate a CT scan ok. Thanks again for the info. 2 weeks and counting since my PAE and still no discomfort or benefit yet. Strange as Dr, Isaacson said my procedure went really well and both sides were embolized nicely.

Neil

Neil- I think that they can find arteries that feed the prostate with the CT.  I wonder if they can know if they found all significant arteries that feed the prostate.  Maybe they need to go in again and find some more ateries to embolize?  I am hardly an expert; just speculation on my part.  I know that you are in contact with experts.

Anyway, from what I have been told, 2 weeks is too soon to give up hope for improvement.  Hope that you have success.  Please keep us updated.  Mark

Hi Neil, I had a 3T MRI last week and they gave me the choice of the usual small bore or the large bore, at a different practise. I am not claustrophobic, so no issues. Being a 3T machine for prostate, they do not use the rectal coil, only the pelvic coil, sitting on your pelvis. A 3T test takes about 25-30 minutes. I found the machine, other than the noise quite relaxing. I had chosen classical music in my ear phones and at some stage, I fell asleep and only woke up when the technician came in to inject the contrast for the last part of the scan. My only issue was how cold it was and needed a blanket.

Geoff

Thanks Mark for your good thoughts. I wonder too if all the relevant arteries were embolized. Dr. Isaacson said that the majority of the necrosis stage would be complete after a week or so which is when the pain is supposed to occur but I had no pain. I have offered to fly back to UNC for an MRI to see  if and where the necrosis is and is not but my offer was turned down. I don't mind doing another PAE even now as it was very easy - but I don't want to keep self-cathing after all this if some arteries were missed or new branches opened up. I'll update next week. Thanks. neil

Thanks Geoff - this is great information and helps me to request the right machine for me. I admire you guys who are not afraid of tight spaces - I feel best in the open outdoors under a big sky! May I ask in what city you are located? Thanks again. neil

Hi Neil,

Yes, great claustrophobia not an issue. I recently built a house and it is on steel piers. At one end of the house, the bearers are approx. 600mm from the ground. When I was doing the plumbing etc, I made a wheel trolly to slide under the bearers to make work easier and quicker.

From looking on this site, seems many peole who had the PAE, took several weeks before benefits arrived. 

I had my MRI results yesterday. PIRAD2, which basically means, Low risk. Clinicaly significant cancer is is unlikly to be present. They did say though BPH was found. I guess at 67, not surprising. So far, other than a rising PSA, I have no issues what so ever. I now need to work out why PSA rising, with no serious PCa issues found. Maybe just the BPH?

I am from Brisbane, Australia.

I agree with Mark's comments. I must have had the external sensor since there was nothing up my butt for that test.

There is another test, the ultrasound, where they DO put a probe up your butt to measure the size of your prostate, and how much urine you are retaining. It is painless, and takes less than a minute.

I didn't directly discuss your questions with Dr. Isaacson, but I had the impression that he was going to embolize different arteries.

Neal

I just keep my eyes firmly closed, then there's no way of knowing how close the machine is to my face.

Neal

Thanks Neal - please keep us informed of your progress. How are you doing now?

Thanks Geoff - you must enjoy caving! That's good news about your MRI. BPH certainly will elevate your PSA due to more prostate tissue producing more of the protein that the PSA tests for. Keep an eye on it but at 67 that is doing pretty good to just start the symptoms as most us started in our early 50s - nature can be cruel that way.

All the best

Neil

Yeah Neil, I have been seeing all you guys with chronic BPH and serious problems, and thinking, umm, when it it my turn?  I was born with a urethra stricture, some where high. Had two DVIU over 20 years when in my 20's and 30's. Did not make too much difference, but while I might be a tad slow, umm, thinking about this, what is the defination of a slow stream? it always starts/stops never dribbles or leaks and no pains. Was recomended to get a urethroplasty, but sounded pretty drastic for some thing that aint broken, so put it off 37 years ago, and still pretty good.

I guess I try and keep the little bugger(prostate) has healthy as I can

I noticed on the Radiologists report he mentioned a few times where he saw 'the transitional gland demonstrates a typical benign nodular pattern' and 'the multiphase dynamic post contrast T1 weighted series shows a typical benign pattern of enhancement'. So, I guess I am develping the dodgy tissue to cause me problems further on. Prostate is 37cc, so still not too enlarged. 

Anyway, important to contribute where I can on these forums, as one day go will I and the information is fantastic as real world.

Geoff

Hi Geoff - one thing to watch for is your post void residual (pvr) to make sure it is not getting too high as it is a sign of the bladder muscle getting weak and if the pvr gets too high then the kidneys could be hurt. Take care

Neil

Getting up 4 Plus times a night.

Neal

Yes, this whole episode has made me think I need a whole lot of base statistics for my urinary system now and going forward. Considering the costs and little chance of rebates here in the private medical world, maybe just easier to present to the public hospital and start the circuit. 

Geoff

Especially when not self inflicted. I have learnt that too much tea after 9 pm will get me up in the night at least once. Stange, beer or wine does not do this?

Geoff