Afraid of a decline after a scheduled cystoscopy😑How have your loved ones fared with what should be simple (exploratory procedure)- well, not that simple - light anesthesia will be given. I'm not ready for him to go downhill over this.
Exploring a Bladder issue.: Afraid of a... - PSP Association
Exploring a Bladder issue.
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Is the procedure really necessary? Or do they want a look see? Doctors treat what they can without thinking about the total effect on the patient. Larry got a reminder to have a colonoscopy a few weeks ago. I laughed and threw the letter away.
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Thx, I remember the colonoscopy letter😄 Jack and I spoke a little more and decided that going ahead with the procedure and possibly catching something that could become a bigger problem for our already complicated enough psp lives would be the smart thing to do. They want a look see, and , of course, The cats out of the bag. If we don't go through with it, he will live with the anxiety of not knowing what is causing this slight, in my opinion😄, hematuria condition. We do have a couple of more weeks to change our minds. Thx and, think of you often💐
Does he have a history of kidney stones? That can cause the blood. Larry has had kidney stone attacks for 50 years. First one he had he thought he was dying. The last one he passed two years ago he was unaware doing so. I found a quarter inch stone at the bottom of the plastic urinal when I emptied it.
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Yikes ! And no history.
Agree with you there needs to be a good reason to put someone through a procedure when life is already complicated. Have they explored all other things it might be which can be done less invasively? Have they said what it might be and what treatment options would be available. If they find something out & then the treatment options aren't suitable is it worthwhil?. Have they eliminated kidney function as a cause?
Sympathise completely with the cat out of the bag syndrome, every time Mum gets a hospital appointment she insists we go as they might have something to make her better. ...
My guy and I decided he should have his cystoscopies with local anesthesia only. Afterwards he said he wasn't bothered much by the discomfort and would not have opted for general anesthesia for such a minor pain. Everyone is different, but we didn't want to risk general anesthesia. The doctor agreed about the risk.
When Dad had to have surgery the doctor explained the risks of having general anesthesia with a neurological condition. Basically dad would stay at same baseline, have the baseline degrade or even die. I opt'ed for the surgery since he was going to die without it. He eventually bounced back to pre-surgery baseline but spent 13 days in ICU/PCU, unrelated to the anesthesia. I'd ask about the possibly use of a local instead of general anesthesia.
Ron
My husband had 2 surgical procedures after his PSP diagnosis. One for his heart which was necessary for any quality of life. The other for an enlarged prostate which necessitated a Foley catheter without it. He had numerous complications while using the catheter. Even though I think both were highly necessary at the time, I wonder now if it would have been better not to do them. He may not have suffered like he has with PSP. Looking back, I do think that the anesthesia may possibly have sped up his decline. It would have been tough making the decision not to do them though at the time.
Also, my husband had a few episodes with hematuria a couple of years ago for which we took a "wait see" approach and they went away. If your husband's not suffering any other symptoms, I think I would recommend a "wait see" approach rather than a "look see".
Pat
Wow - Thank you so much, everyone!!!! Love Racinlady's "wait see" over "look see" We went in today and had all the pre-op tests taken. But, I keep reading more and more and there are risks with just the poking around in the bladder. You all have given me strength💪🏼 I did ask about what might show up and the treatment, but didn't come away with clear answers. I will be calling Dr. tomorrow to chat a little more, bcz, yes, there are no symtoms other than seeing the blood in the bowl or on the floor. Thanks so much ~ again😘