Just checking before I agree to the knife.
I have been living with PSP for over 5yrs and I believe so far that I have been let off lightly BUT: I have been struggling with my wee, can't seem to get a strong flow and apart from dribbling at the end, I constantly feel the need to wee and then it's only small amounts. The upshot of the problem is the urologist wants me to have an operation which could cure it or could cause incontinence. Have any of you out there had any experience in this proble?
Hi. C has trouble exactly the same and I have been told it is the PSP, he did try a drug that should have helped him not to feel the need to go so much but it didn't help, so just know bing with it
Love and hugs
Helen xx
Don't agree to the knife is my opinion!!!! I think without a doubt it's another shitty part of Psp!! Sorry to say that but I'm afraid that's part n parcel of this dreadful illness x
Maybe consult with another urologist, as incontinence is not what anyone would consider an acceptable consequence of a surgical intervention meant to correct said problem. PSP and other neuromuscular disorders can certainly affect bladder function, but BPH is a condition that commonly affects men as they age. You have not said whether or not any other diagnosis is also involved , so ....... we aren't in a position to advise ; in addition I'm no urologist ! In today's world though, I would venture the following : seek out the best urological surgeon who is located close to or in a major city and affiliated with an excellent hospital. Using diagnostic testing they should be able to advise you reliably. With the high tech approaches that are being used, incontinence is a very atypical outcome. PSP can cause incontinence, but your surgery , barring an irretrievable or neglected situation , should not, I would hope ! Best of luck in finding the best solution for your urinary problem !! Take care !!
My hubby developed the same problem a few years after he was diagnosed with PSP. We always put it down to the disease and dealt with the problem with frequent use of urine bottles and eventually an external catheter when he became less mobile. Of course it could be due to some other underlying cause which you should investigate. However, before undergoing any surgery please ask your urologist to consult with your neurologist. Too many people have posted about extremely negative declines after anaesthetic, and our neuro was adamant that it was a very bad idea for PSP sufferers. I understand that this problem is causing you discomfort and distress. However, after having lived through some of the very tough challenges of full blown PSP first hand with my hubby, if you've been fortunate enough to avoid the worse parts of PSP so far, perhaps think carefully whether you want to risk aggravating the disease, before you go ahead with the surgery. Best of luck to you xx
I thought that I had read on here that having anesthetics was to be avoided because it can advance the brain degeneration.........
Regards,
Patrick.
Ps.
Just also read this in the previous reply.
When dad had to have surgery to correct a blocked bowel the surgeon sat down and explained the inherit risks of being put under. Age is prime consideration, any physical aliments and definitely any neuro issues. Dad was between a rock and hard place to be honest, no surgery would mean going septic and dying or risking the surgery and hope everything turned out ok. For the most part everything was ok but he has NEVER recovered to his pre-surgery baseline. Everyone is different but I would seek a 2nd opinion about the surgery.
Ron
We just went through radiation treatments for prostate cancer. My husband was given a medication for the constantly feeling the need. His peeper was inflammed from the radiation. But! Not until he stopped drinking orange juice (on MY advice) did it go away. 😄
Anyway, an enlarged prostate can mess you up wee wise. If you haven't had that checked, you might want to ask about it~
My husbands prostate was so large it did occlude a ureter not urethra - he ended up having an emergency nephrostomy that coincided with the cancer diagnosis. We were so lucky we were able to have the nephrostomy reversed in good time. The enlarged kidney was painful enough to send us to the ER. - just remembering stuff 
My two cents worth is No.Ask the urologist if he is familiar with psp. First . How old are you , do you have a in large prostate, have you had a PSA test for prostate cancer and if you are a lady then this is all not of any use to you.. Big step.
Dee in BC
Speak to your GP. I am assuming you are the male of the species so probably prostate related, meds can help to stop the prostate enlarging but without treatment eventually it will occlude the bladder opening and you will go into retention, also at the mo if you have residual in the bladder you are increasing your risk of infection.
New techniques are very effective and safe.
If you are female I have'nt got a clue sorry!
Have a good Sunday
Julie
Sorry I forgot to mention, I am male with an enlarged prostrate and have tried 5 different drugs with out success plus a urodynamics exam. Fortunately I don't have cancer.
My husband has CBD, and had an enlarged prostrate, urologist suggested an operation which my husband agreed to, on his discharge he was totally incontinent, and had no sensation of when he needed to go or how to control it, I was totally unprepared for this and had a big meltdown, ringing the hospital in floods of tears and hiisterical to boot😫 They told me to go and buy some pads!! Once I had calmed down, and contacted the continence nurse she was brilliant, we used the Afex system, which I would recommend to any male with this problem, it is available on NHS, and made Ian feel so much better in himself, as we could go out without fear of any issues, I would talk to your GP if you cannot speak to the neurologist, maybe a referral to the nurse for advice, as they are very knowledgeable
Good luck with what you decide, and the other thought I had is that most people with this stinking disease have urine problems
Janet
Hi
My husband has been seeing a Neurologust with a special interest in urology and if you don't have an enlarged prosttte as has been mentioned previously there are drugs that may help. Not every drug works for everyone but my husband has found real benefit. He still needs to wear incontinence pants but life is more comfortable.
My husband ihas been taking Trospium and Mirobegrom for 18 months with good effect. Last 3 months he has reverted to constantly wanting to PU then only passing small volumes , or not being able to PU despite a feeling he needs to. so in addition to the Trospium and Mirabegron he has just started on Tamulosin 5 days on and we are seeing an improvement bigger volumes less frequency. There is also Tibial Nerve stimulation to consider or Botox injections - these will be our next steps as and when he needs them.
Consider very carefully if surgery is the right thing for you, neuroligistsbest placed to advice.
Good luck. Keep the faith much out there that can help
Xxxxx
surgery does seem too me to be a step too far I think that you should
just live with it. I have similar problems as you they gave me some drugs that worked for a time but after a few weeks were ineffective so i stopped taking them after upping the d dosage a few times , also I would be vary careful about the anaesthetic. l was perfectly well until I had my kidney operation about 10 years Ago after about 6 months the first signs of parkinsonism started which changed to psp about 3 years ago. I just feel that the anaesthetic had something to do with it
My wife has gallstones but the surgical team will only use anesthetics as a last hope. Think carefully before making a decision.
Hi allany,
My husband is a well respected urologist in the US, and while PSP has taken much from him, his urologic knowledge is totally intact. He would recommend having a TURP (trans -urethral resection of the prostate), but with spinal not general aneasthesia. He has had a couple of orthopaedic surgeries since diagnosis, using spinal anaesthsia and has had no adverse effects.
Incontinence should be rare after this surgery, though there could be some initially. PSP can also cause incontinence over time, so I don't think that should be a reason to put up with the symptoms you are having.
Good luck. Finoni
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