Diaper Paradox

[Zeke]

I’m not a doctor but that doesn’t sound like it’s great. The very last thing that I’d hope for is a doctor paradox when my spine is involved. Hopefully everything worked out okay!

It was several hours of surgery, but I don’t remember much of it after the initial introductions. It went relatively well, but they didn’t pin the vertebrae in place and immobilize the spine post surgery as they do now and this resulted in a lot of chronic pain afterward. My doctor had me in one of those soft collars like they use for whiplash which didn’t do a lot of good (now they’re using those immobilizing collars like they use on accident victims with neck injuries and you can’t move your neck at all). After two weeks he wanted me to start removing my soft collar for short periods of time so my neck muscle wouldn’t go atrophy. After being a wrestler in high school I had an 18-1/2 inch neck wasn’t at all worried if some of it atrophied. I was more concerned about fusion movement before they set. I can’t buy an off the shelf, large, dress shirt at most major retailers because their neck sizes usually only go up to around 18” in their large size shirts. The neck healed, but I had steadily increasing pain for which I was up to 225 mg of morphine sulfate and 50 mg of hydrocodone a day. About 6 years ago I found radio frequency ablation which cauterizes the nerves transmitting the pain and has helped get down to 20% of the opioids that I was talking.prior to the procedure.

 

[newt]

It was several hours of surgery, but I don’t remember much of it after the initial introductions. It went relatively well, but they didn’t pin the vertebrae in place and immobilize the spine post surgery as they do now and this resulted in a lot of chronic pain afterward. My doctor had me in one of those soft collars like they use for whiplash which didn’t do a lot of good (now they’re using those immobilizing collars like they use on accident victims with neck injuries and you can’t move your neck at all). After two weeks he wanted me to start removing my soft collar for short periods of time so my neck muscle wouldn’t go atrophy. After being a wrestler in high school I had an 18-1/2 inch neck wasn’t at all worried if some of it atrophied. I was more concerned about fusion movement before they set. I can’t buy an off the shelf, large, dress shirt at most major retailers because their neck sizes usually only go up to around 18” in their large size shirts. The neck healed, but I had steadily increasing pain for which I was up to 225 mg of morphine sulfate and 50 mg of hydrocodone a day. About 6 years ago I found radio frequency ablation which cauterizes the nerves transmitting the pain and has helped get down to 20% of the opioids that I was talking.prior to the procedure.

That is horrible. All that you went through was became routine a few years later too. You’re lucky you didn’t have MORE problems even though you went through so much. And constant pain is it’s own hell. I’m glad you got the surgery to lower the pain. Opioids are not something you want to rely on unless it’s absolutely necessary.

 

[Angelapinks]

I’m not a doctor but that doesn’t sound like it’s great. The very last thing that I’d hope for is a doctor paradox when my spine is involved. Hopefully everything worked out okay!

91', well I am guessing all went well then. Good to hear if everything is still OK. Oh I got it alright LOL.

 

[Zeke]

That is horrible. All that you went through was became routine a few years later too. You’re lucky you didn’t have MORE problems even though you went through so much. And constant pain is it’s own hell. I’m glad you got the surgery to lower the pain. Opioids are not something you want to rely on unless it’s absolutely necessary.

It’s so much better now that I’m getting the radio frequency done annually. The pain is manageable with so much less opioids than what I was taking before getting it done the first time. I’m scheduled to have the procedure done again July 20th which is about a year since I had it done last. The pain is starting to get worse as the nerves that they’ve cauterized regenerate and after a couple of weeks of recovery from the procedure I should be back to getting good relief from the meds that I’m taking. The physician’s assistant that prescribes my meds and books the procedures said that Medicare would pay for it to be done every 6 months if I needed to, but I try to stretch it out to 12 months. Medicare wants you to be able to claim a 60 to 70% relief in pain for them to authorize payment for the radio frequency ablation so that’s why I try to make it 12 months. This way there’s a substantial reduction in pain that satisfies Medicare and makes me feel so much better when it’s done. Medicare is getting better though because they used to have me do one side and a week later do the other. Now they allow the doctor to do both sides at once so I don’t have to be sedated twice, arrange for transportation for two procedures, and my recovery period is cut in half so I thrilled by the change. If I remember correctly this will be the 6th time that I’ve had it done.

 

[Edgewater]

Wow. I’m so sorry to hear that. It must be so hard to go from fully continent to that in a single day. Especially with kids. And especially in a time without great disposables like now.

If I can ask, I’ve always wondered which is worse. So for me I’ve always struggled with bed wetting. Then I slowly transitioned from needing to pee a LOT during the day to some accidents, to megamax. It has sucked but at least I have been familiar with diapers my whole life. But my urologists and nephrologists can’t pinpoint the cause, which makes me feel worse because on the rare occasion someone asks, I can’t give them a great reason. But because of that I always hold out hope MAYBE I can fix my problems.

But with your situation, there is a clear cause. Anyone who asks you can point them to a direct cause. Which is nice. Except nerves can’t be fixed. Like you said no amount of PT can help. You can explain but you can’t resolve. Which must be extremely difficult.

I’ve always hated that when on the occasions my family or friends realize I’m wearing I can’t give them a full answer because I can’t even fully explain it. I also think there might be hope with a treatment only to be thrown back to reality when it fails. But at least I’ve lived with diapers most of my life. You were thrown into it.

Now that I’ve gotten this far I’m not sure what my question actually is besides recognizing how you must have struggled. And my struggle. And all of our struggle here. Is it better to know the cause and not be able to fix it? Or to have unknown problems and deal with crushed hopes? Or are we all just lucky this board exists so we can share our struggles and discuss with people who understand?

I was lucky to be raised in a loving home and although poor was told to never use yesterday as a reason not to work for a better tomorrow as tomorrow is the future and it is your choice what happens. Yes, my dear wife and I cried that first night home from hospital, but we both resolved that our son would grow-up with the same love and opportunities that both of us had. The next day with leaking hoses, a change to cloth diapers started a means of being fully mobile, while also being out and about! Just shy of 18 months later, his sister was born.

Point being, with adjustments, wearing diapers were a very small limitation as to what other car crash victims face. Within a year, I had come to terms with cloth diapers. Near everyone knew of the car crash and my wearing cloth diapers likely why I never got many questions.

What about tomorrow. Well, the Sun will come out tomorrow and there is a slight chance out there as the Swiss have successful implanted a cable connection between the top of the spinal cord to just below its base, which allows an individual to learn to walk again! That location is the same point that links with the bladder.

Do not struggle looking for an answer others will find 'satisfactory' in what causes your need to wear! It only becomes a spiral in which leaves you believing you need a better answer. Today, there is no medication or surgical procedure available to resolve your need to wear. I have a answer you are welcome to use: Would you rather that I leave a puddle on your floor?

 

[Zeke]

Never had PT as my U-IC was caused by a car crash resulting in metal entering my lower pelvis region and the surgeries to put my bladder back together and the nerve damager from the metal and surgeries. Today, the reason remains the same, tiny bladder and poor neurological communication. The good part is that I do have dry periods between the bladder releases.

Back 45 years ago, one came home with a hose and bag. With even a limited lifestyle they leaked and my dear wife was not having it and with our young sons cloth diapers and adult plastic pants from the drug store, she diapered me. Within a could have days we were out and about. Disposal diapers sucked big time in those days. So, we learned the in an outs of wearing cloth diapers and plastic pants.

You know, Edgewater, with what happened to your lower pelvis region and the metal entering it you probably have a pretty good idea what it felt like to be carved up in a sword fight. When I read about, or watch videos about the old sailing ships and the battles that they used to engage in I tremble when I think about what it must’ve felt like to get sliced and diced by a sword. Between the swords, muskets, canons, flying splinters and chucks of wood, and primitive ship’s medical doctors doing their amputations and non sterile surgeries it makes me shiver just thinking of it. It sounds like you reenacted this carnage as closely as it could be done given the conditions that govern our society today. It must’ve been one heck of a wreck that you survived, I’m glad you did.

 

[Edgewater]

You know, Edgewater, with what happened to your lower pelvis region and the metal entering it you probably have a pretty good idea what it felt like to be carved up in a sword fight. When I read about, or watch videos about the old sailing ships and the battles that they used to engage in I tremble when I think about what it must’ve felt like to get sliced and diced by a sword. Between the swords, muskets, canons, flying splinters and chucks of wood, and primitive ship’s medical doctors doing their amputations and non sterile surgeries it makes me shiver just thinking of it. It sounds like you reenacted this carnage as closely as it could be done given the conditions that govern our society today. It must’ve been one heck of a wreck that you survived, I’m glad you did.

Never considered that version, but I see the connections, I even winched a bit!

I placed a heavy burden on several angles that morning. I am told that a fraction of an inch right of left things could have been very different. The last thing I remembered was looking out my side window and seeing the dashboard of the car I hit. The other driver had failed to stop! I am told that not wearing a seatbelt likely saved her life. I am saying it was the gathering of angles.

I am just as glad my friend!!

 

[Angelapinks]

It’s so much better now that I’m getting the radio frequency done annually. The pain is manageable with so much less opioids than what I was taking before getting it done the first time. I’m scheduled to have the procedure done again July 20th which is about a year since I had it done last. The pain is starting to get worse as the nerves that they’ve cauterized regenerate and after a couple of weeks of recovery from the procedure I should be back to getting good relief from the meds that I’m taking. The physician’s assistant that prescribes my meds and books the procedures said that Medicare would pay for it to be done every 6 months if I needed to, but I try to stretch it out to 12 months. Medicare wants you to be able to claim a 60 to 70% relief in pain for them to authorize payment for the radio frequency ablation so that’s why I try to make it 12 months. This way there’s a substantial reduction in pain that satisfies Medicare and makes me feel so much better when it’s done. Medicare is getting better though because they used to have me do one side and a week later do the other. Now they allow the doctor to do both sides at once so I don’t have to be sedated twice, arrange for transportation for two procedures, and my recovery period is cut in half so I thrilled by the change. If I remember correctly this will be the 6th time that I’ve had it done.

Hey Zeke, I have a very similar injury to yours and also have the Radio Frequency Ablation about once a year. This year will be my 9th. time and as you said it can last about a year more or less. This is done on my lower back for extreme pain but as I also had a neck injury. I may consider it for that also if it gets any worse. each and every time the doctor did the procedure he would say to me "let me know if you have any incontinence issues" and I did not until about three years ago but when I told him before another procedure about my losing control he said "No it can't be that" Anyway I do this so I don't need any pain meds as I take enough pills as it is and it does seem to get rid of my nagging back pain.

 

[Zeke]

Hey Zeke, I have a very similar injury to yours and also have the Radio Frequency Ablation about once a year. This year will be my 9th. time and as you said it can last about a year more or less. This is done on my lower back for extreme pain but as I also had a neck injury. I may consider it for that also if it gets any worse. each and every time the doctor did the procedure he would say to me "let me know if you have any incontinence issues" and I did not until about three years ago but when I told him before another procedure about my losing control he said "No it can't be that" Anyway I do this so I don't need any pain meds as I take enough pills as it is and it does seem to get rid of my nagging back pain.

Radio frequency ablation has been a real godsend for me. It used to be that I couldn’t even look up more than a couple of degrees without severe pain. I had about a 45’ pine tree in my front yard that had the top broken out of it and the tree had to come down. To look at its top I had to walk down the street to get far enough away to see the top with only looking up a few degrees. Back then I couldn’t finish the last bit in a can of pop because I couldn’t tip my head back far enough to drain it. The impact from the seems in concrete roads used to go right up my spine into my neck when driving and gave me a lot of pain but that’s a thing of the past as well. From what my doctor’s PA told me what’s causing my pain in the past years is the facet joints in the area where I had the trauma from my accident and the two level fusion that I had to deal with it. With age these facet joints become more arthritic causing more pain with ever year I age. These things are all in the past since I’ve been getting the procedure done. Before having it done I could only think about buying and riding a motorcycle because of the stress it would put on my neck, but now I’m riding regularly. The last time I was into the doctor I actually rode the Harley the 90 miles there and back. I asked her if I was doing damage that I just couldn’t feel by extending my range of motion so far and doing things like riding the bike, but I was told that it should be fine. I’m glad to hear that it’s also helping with your low back pain. I’ve been fortunate not to have low back problems for many years now. Not since when I was first married in my mid twenties and I had severe sciatic nerve pain for a couple of years. The only good chiropractor that I’ve seen in my life told me to get out and walk a few miles every day and that it would do more good for me than he could. He said that all those people in his waiting room would likely drive if they lived more than a couple of blocks and that walking was the body’s way of aligning the spine, but nobody walks any more. Couldn’t say that he was right for sure, but it sure helped my lumbar pain which is what I was seeing him for.

 

[newt]

Do not struggle looking for an answer others will find 'satisfactory' in what causes your need to wear! It only becomes a spiral in which leaves you believing you need a better answer. Today, there is no medication or surgical procedure available to resolve your need to wear. I have a answer you are welcome to use: Would you rather that I leave a puddle on your floor?

This is some of the best advice I've ever received. Since I started having problems I have come a LONG way. But until you put it like that I didn't realize how much I was looking for that satisfactory answer for others to explain and how it was driving me for answers. Obviously when I go to doctors and my PT I want to fix the issue, but didn't realize how much I was also looking for a cause, something that justifies my problem, as if it needs to be justified. And I didn't realize how much that quest was interfering with acceptance.

Thank You

 

[hbic60]

This is some of the best advice I've ever received. Since I started having problems I have come a LONG way. But until you put it like that I didn't realize how much I was looking for that satisfactory answer for others to explain and how it was driving me for answers. Obviously when I go to doctors and my PT I want to fix the issue, but didn't realize how much I was also looking for a cause, something that justifies my problem, as if it needs to be justified. And I didn't realize how much that quest was interfering with acceptance.

Thank You

newt,
I'd always try to balance out what effort I'm doing (meds, surgery, PT, whatever) and what is the effective result I can expect and if it's really worth to do so. I've for example a combined dribble and urge IC, my doc honestly told me, that he could decrease, but not heal my urges to a certain level with some meds, if I'm willing to accept certain side effects. I calculated for myself, that a decrease of my urges would maximum lead to the result, that I might get over with thinner diapers than I'm wearing now. On the other hand, I'm comfortable with what I'm wearing, I only have to change once, max. twice over the day (+ one different nighttime diaper), so I see no reason why I should accept for myself uncomfortable, maybe in long term even unhealthy side effects just for the reason to wear thinner protection.

For sure, if it will make you happy (and there is a chance) to improve to a level you fell better with - no doubt, go for it and try everything to reach that goal. On the other hand, it's also OK to accept your condition and still live a happy, fulfilling life with it!

 

[newt]

Thats also great advice @hbic60 ! Before the pandemic I had tried 2 meds, Oxybutynin and Mybetric. Oxy made me feel like I was actually dumb, so much so when I went to my psychiatrist to tell him my ADHD meds must not be working anymore, he told me that oxy can have that side effect. So I switched to mybetric, which had no side effects but also no actual effects on my bladder.

I probably would have kept trying other things, but with quarantine it suddenly wasn't as big an issue. I moved in with my now fiance early in the pandemic, and she has been absolutely WONDERFUL in helping me. She is absolutely supportive and has never once cared about the diapers. So up until early this year, I had become comfortably numb to the diapers. I don't think it was so much as positive acceptance as it was a fatalistic acceptance.

I decided to go to the urologist again in January to see if anything can help, but was much less willing to deal with any side effects of meds. Thats when she recommended PT. I figured I'd give it a try, since unlike meds there are no side effects. After a few weeks I felt something I hadn't in years: hope. I was making progress.

Last week I decided to try one more med, gemtesa. My doctor gave me a 6-week sample supply after assuring me she has seen very little side effects from it. To be honest, this feels like my last stand. I don't want to try botox and risk retention and catheters. It also isn't a cure so much as (at best) a temporary reprieve.

Whatever progress I make, Ill take happily. I will have done everything I can, every treatment I'm willing to try. To me, it will be much easier to accept the situation knowing I've done what I could.

 

[hbic60]

Last week I decided to try one more med, gemtesa. My doctor gave me a 6-week sample supply after assuring me she has seen very little side effects from it. To be honest, this feels like my last stand. I don't want to try botox and risk retention and catheters. It also isn't a cure so much as (at best) a temporary reprieve.

Whatever progress I make, Ill take happily. I will have done everything I can, every treatment I'm willing to try. To me, it will be much easier to accept the situation knowing I've done what I could.

Fully agree to that. Being urinary IC is for sure not the end of the world and I found that with proper protection I could live my active and social life nearly in the same way as without being IC. It's also great to hear that you have the same luck with your fiance than I have with my wife. Having an understanding and supportive partner at your side who doesn't care at all which kind of underwear you have is amazing and a great source of self-confidence and helps to get rid of any kind of shame or embarrassment.

 

[daylight]

Not sure what you and your PT have defined as an obtainable goal. But, they tend to be less rigid as you hit given thresholds, i.e. number of releases during the day! The goal of increasing volume and decreasing the number of releases is all based in better muscle control. You may never get to a point in which you are not relying on diapers, but you maybe able to use the toilet a couple of times a day.

Exactly, PT is tailored to the individual, and setting milestones/goals is important. Fully continent is not the only measurement of success.

After over a year of PT, it takes time for some, I have less pain and instability, more importantly, I have skills that help me. P. Therapists are like doctors, or anyone, they have different opinions and approaches, if you find you have reached a wall, communication, or an off-vibe-feeling, seek another. FWIW I'm contemplating seeking a different therapist this year due to wall/vibe feelings.

 

[newt]

Fully agree to that. Being urinary IC is for sure not the end of the world and I found that with proper protection I could live my active and social life nearly in the same way as without being IC. It's also great to hear that you have the same luck with your fiance than I have with my wife. Having an understanding and supportive partner at your side who doesn't care at all which kind of underwear you have is amazing and a great source of self-confidence and helps to get rid of any kind of shame or embarrassment.

I couldn’t agree more. She has done more for me than she will ever understand. I intend to repay that kindness to her every day until I die.

My favorite story of her is when we were in Mexico after we got engaged. I hadn’t gotten a massage since I wore diapers, which by then was a few years. She wanted a couples massage. I was dragging my feet until she goes and grabs one of my diapers and puts it on and tells me “now they will think I need diapers too now can we go?” She would absolutely have worn it too if I didn’t stop her. I almost proposed to her again.

 

[Diprs2]

The last time that I saw a paradox was when I had my cervical spinal surgery in ‘91. On doc started the procedure on my neck and the other doc started harvesting the bone from my hip needed for the 2 level fusion. So that was my pair of docs.

Hahaha, very good!