Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Hey all-
I'm due to see my Urologist on Monday and my Pain doc Tuesday, and I'm at a loss about just what all to ask regarding my lithotripsy on the 16th. If anyone who has gone through it (kidney stones broken up by lasers or sound waves- I don't even know which!) could leave me some info, I'd really appreciate it.
Passing a stone is the worst pain I've ever felt. The last 3 almost did me in. But I also have had RSD for 16 years and have taken MSC and MSIR all that time. I hear from a few people that the worst part is waking up after, and dealing with the procedure. I want to be sure that they cover my pain. I mean, it's a same day surgery in the states (though I think it should be in hospital when complicated as mine is) and I'm terrified both of the stent they put in to bring the crushed stones/gravel through the ureter, and of the stones passing.
Anyone who's had even 1 stone knows the feeling. You feel like you're dying. Then there's the fragments and pieces and stones that pass after the surgery. How the heck do I deal with THAT amount of pain? Meanwhile, will I take my RSD meds on time? And how is the stent removed?
It seems to me that the aftercare is the worst part of this surgery, but I don't get any info until Monday. I'm fighting an RSD flare due to freezing temperatures & I'm totally terrified of this procedure. What if someone bumps or touches my RSD foot while I'm out? What if I can't get put out b/c I've been on meds so long?
Seriously, I need help getting the right questions to both doctors, so I don't suffer the way I've heard. A very kind friend here gave me some great advice, which I am going to take and share with the urologist. Beyond that, I'd love to talk to someone who has had this done in the states. Apparently, they're a bit kinder in other countries.
I know the surgery has to be done, because the stones in my kidneys are too large to ever pass. But it'll take several surgeries to make it safe. I travel a week a month and have been home (tri state area) since November b/c I'm scared to leave the country.
If one kidney stone makes me vomit my guts out, how will I handle all the gravel from the kidney, along with smaller stones not affected & the pieces of broken stones that weren't shattered?
Really, I'm becoming obsessed. I dreamt about this last night and woke up in a cold sweat as if I were a 3 year old. I hate hospitals and am phobic about needles. I have a very irritable bladder on top of all that.
So I see the Urologist on Monday. What should I ask? And I see my pain doc on Tuesday, and I wonder the same thing. The main pain med for kidney stones is a miracle drug called Toradol but you can only take it for 5 days. It's non-narcotic but works a million times better than the IV Dilaudid they tried each time.
Also, my Pain doc said that they'd probably use the same anesthesia that Michael Jackson died from- propaphol? Not sure of spelling. Is it safe? I mean, safe in the hands of a doctor who is specializing in anesthesia?
Should I ask the pain doc to prescribe something extra for the procedure? Or rather, for AFTER the procedure? And when I've had surgery since RSD I've always been told to take my RSD pain meds as normal before surgery. Anyone else been told this? I went through a miscarriage D&C and 2 rounds of IVF, IUA, etc., all taking my regular meds before the surgery. Each time I awoke in pain, but NOT from my foot.
Oh dear, I AM going on about this! But it's coming up so fast and I see the docs Mon/Tuesday, so what should I ask? Any advice is appreciated. I'm sending myself into a tizzy and the surgery isn't until the 16th. 12 days away. But doc appts are Monday & Tuesday. Those are for questions, concerns, etc.
If anyone else has had lithotripsy on a kidney, I'd love to hear from you. I'm SO confused right now. Actually, I'd love to hear anyone's advice, as we're all CP patients.
Thank-you!
I'm due to see my Urologist on Monday and my Pain doc Tuesday, and I'm at a loss about just what all to ask regarding my lithotripsy on the 16th. If anyone who has gone through it (kidney stones broken up by lasers or sound waves- I don't even know which!) could leave me some info, I'd really appreciate it.
Passing a stone is the worst pain I've ever felt. The last 3 almost did me in. But I also have had RSD for 16 years and have taken MSC and MSIR all that time. I hear from a few people that the worst part is waking up after, and dealing with the procedure. I want to be sure that they cover my pain. I mean, it's a same day surgery in the states (though I think it should be in hospital when complicated as mine is) and I'm terrified both of the stent they put in to bring the crushed stones/gravel through the ureter, and of the stones passing.
Anyone who's had even 1 stone knows the feeling. You feel like you're dying. Then there's the fragments and pieces and stones that pass after the surgery. How the heck do I deal with THAT amount of pain? Meanwhile, will I take my RSD meds on time? And how is the stent removed?
It seems to me that the aftercare is the worst part of this surgery, but I don't get any info until Monday. I'm fighting an RSD flare due to freezing temperatures & I'm totally terrified of this procedure. What if someone bumps or touches my RSD foot while I'm out? What if I can't get put out b/c I've been on meds so long?
Seriously, I need help getting the right questions to both doctors, so I don't suffer the way I've heard. A very kind friend here gave me some great advice, which I am going to take and share with the urologist. Beyond that, I'd love to talk to someone who has had this done in the states. Apparently, they're a bit kinder in other countries.
I know the surgery has to be done, because the stones in my kidneys are too large to ever pass. But it'll take several surgeries to make it safe. I travel a week a month and have been home (tri state area) since November b/c I'm scared to leave the country.
If one kidney stone makes me vomit my guts out, how will I handle all the gravel from the kidney, along with smaller stones not affected & the pieces of broken stones that weren't shattered?
Really, I'm becoming obsessed. I dreamt about this last night and woke up in a cold sweat as if I were a 3 year old. I hate hospitals and am phobic about needles. I have a very irritable bladder on top of all that.
So I see the Urologist on Monday. What should I ask? And I see my pain doc on Tuesday, and I wonder the same thing. The main pain med for kidney stones is a miracle drug called Toradol but you can only take it for 5 days. It's non-narcotic but works a million times better than the IV Dilaudid they tried each time.
Also, my Pain doc said that they'd probably use the same anesthesia that Michael Jackson died from- propaphol? Not sure of spelling. Is it safe? I mean, safe in the hands of a doctor who is specializing in anesthesia?
Should I ask the pain doc to prescribe something extra for the procedure? Or rather, for AFTER the procedure? And when I've had surgery since RSD I've always been told to take my RSD pain meds as normal before surgery. Anyone else been told this? I went through a miscarriage D&C and 2 rounds of IVF, IUA, etc., all taking my regular meds before the surgery. Each time I awoke in pain, but NOT from my foot.
Oh dear, I AM going on about this! But it's coming up so fast and I see the docs Mon/Tuesday, so what should I ask? Any advice is appreciated. I'm sending myself into a tizzy and the surgery isn't until the 16th. 12 days away. But doc appts are Monday & Tuesday. Those are for questions, concerns, etc.
If anyone else has had lithotripsy on a kidney, I'd love to hear from you. I'm SO confused right now. Actually, I'd love to hear anyone's advice, as we're all CP patients.
Thank-you!
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My daughter has lots of issues with kidney stones. She could not handle stents at all, they were way too painful for her. But remember everyone is different. It is standard to put in stents.
You have listed some very good questions in your post. I would take those questions with you. Also make sure they give you the correct diet to help you stop making these stones.
I hope some of the people who have personally gone through this have some good advice for you. I do have to agree with you about not traveling until this is under control.
Sending lots of positive energy and prayers.
Hugs-RJ
I had Lithotripsy twice, 1 1/2 years apart. Both of mine were Extracorporeal shock wave lithotripsy (ESWL) "Extracorporeal" means outside the body. I was laid face down on an exam table but in between me and the exam table there was a water filled pad, it felt kinda weird like you were laying on jelly.
I was given general anesthesia both times I had to have it. I had 17 stones the first time and a year and a half later had 15 more. Currently I have 12 stones in my right kidney, and that's where they will stay unless they cause a problem.
The shockwaves do not turn the stones into "dust" unless they've gotten a whole lot different in the last 8 years. They reduce they stones to small particles that you still have to pass in your urine. Sometimes one can get stuck, it's not abnormal. Most Dr.'s do put a stint in, especially if you've passed multiple stones, because every time you pass a stone you "rough up" the inside of your Ureter and this can make it harder to pass stones, and it can make the stones cause more damage as they pass. Stints are usually kept in for about 2 weeks. And they are not the most comfortable thing to have in.
Don't be surprised if you have to have a catheter for the procedure, they want to be able to monitor urine output and collect the stone particles.
After the procedure my back/kidney area was very bruised and extremely sore and painful to the touch. It looked and felt like someone had been punching me over and over again. That goes away over time. With the first one I tried to just stay still and baby it...learned the 2nd time to get up move around it made the pain go away quicker.
My right kidney is pretty much shot and still full of stones, but I follow a "stone" diet to protect my good Left kidney, because that's the one doing all the work.
No Caffiene
No Oxilates - some teas
No Arifical Sweetners
Limited Animal Protiens - red meat
No Sardines
No Carbonated beverages
Limited leafy greens - some are high in Calcium Oxalates
Limited Salt
Limited Calcium/Dairy (if your prone to kidney stones it's not all that good for you)
Very few processed foods.
Foods high in Uric Acid
Sounds like a weird collaboration of things but when your kidney are not working at their full potential they can't break down certain things, and when certain proteins, minerals, etc. can't be broken down they become kidney stones.
And most people don't ever get just 1.
Kat
I haven't had this type of surgery, but want to wish you well with it.
The last surgery I had I was worried also about my RSD, but usually they will ask you if you want something to relax and all those fears are calmed down. Remember you've been dealing with it for a long time and you've made it this far and will make it through this.
I know Kat has had to deal with this too but hopefully in the past 8 years things have improved on this surgery (fingers crossed).
Kat hope those stone vanish into thin air!
Best wishes on your surgery!
I'm more worried about the stent than anything else. I can't STAND catheters and always made deals with my past surgeons to remove them before I woke from anesthesia. Having a stent in my bladder will cause me to be nuts. I get bladder infections and have had bladder troubles for years- I can't even imagine doing this.
That said, I have so many stones in each kidney that they stopped counting. I'll be having these procedures for many years. Maybe I should stop thinking about it, but honestly, this is one of my worst fears. Needles AND a stent? UGH!
Bill- I wil LYK what happens & pray it's not so bad. Online I read that most people are back to work in a day. WTH? How is that possible?
Either way, I'd really appreciate prayers and good thoughts. Maybe they don't count if you have to ask but I'm hoping they do! ;)
I find it helps to have some one there to help me remember what I was told..:-) :-)
Sorry your year's starting out this way..
Maybe you're just getting the bad out of the way right away..
And, it's gonna' be all good from there on through the year..:-) :-)
Hugs
jc
Also if your Urologist gives a choice of doing the procedure in a tub, or on a water mat....being in the tub might be safer for your RSD foot, as it wouldn't be getting bumped.
And yes, regardless of anesthesia they do give you "twilight" meds to relax you beforehand.
All our schools are closed, it's -12 degrees right now and they're advising no driving. The snow is up to my waist, but I bet they'll still expect patients to show up today. I want to ask my questions, but do I have to put my foot into serious risk for an RSD flare to do it? My DH is home sick and my son is home b/c it's a snow day, so at least I don't have to pay a sitter, but driving myself is going to be a problem.
That said, I put a bunch of questions into my Iphone so I can just ask, but I tend to get sick to my stomach and dizzy when discussing medical stuff. I've always been weak in that area. I suppose I should call and ask if they're open as the news just showed the roads and they're a mess.
The other problem I'm having is that MY urologist won't be the one doing the surgery! They take turns every Thursday, and my date, the 16th, is not HER date to do them. That is one of my biggest concerns as I don't want to be judged by a doctor I've never even met. Well, I guess we'll see! My appt isn't till 1:30pm so it'll be awhile before I leave, IF they're open today due to weather.
Oy, I hate the cold weather after December! ;)
I worried so much about today and Mother Nature decided to give me a few more days to worry! ;)