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_chaotictears_ @ 07:10 am: Kidney Stones & Lithotripsy
I was wondering if anyone here has had kidney stones? If so, were u treated with lithotripsy? Was it painful before/during/after the treatment, & how did it affect your M.E., both immediately after the procedure & in the long-term?



I'm going into hospital on the 9th Jan for lithotripsy treatment to "blast" away my SIX kidney stones (four on the right side & two on the left side), & I was hoping that someone here might have had the procedure done in the past & be willing to share their experience with me, good or bad.

I've been told by my Dr that it will be extremely painful for me to pass the broken up stones ("the worst pain a body can have"), especially because I have multiple newly healed micro fractures in the bottom of my spine (due to v severe Osteoporosis). I'm not 1 of those ppl that freaks out when they're told exactly how painful/awful something is going to be tho, so pls do be honest - I prefer to know the truth.... Forewarned is forearmed, & all that!

However, altho I've had many different procedures done over the yrs, I'm now more nervous about having things done, since a surgical procedure went seriously wrong last yr & I ended up unconscious, on a life-support machine, & in hospital for a total of four AWFUL months. So I'm sure u can understand my apprehension & need for some knowledge/first-hand experiences!

I'll be having the treatment done as an inpatient (perhaps for 3 or 4 days), as I'll need to be closely monitored afterwards. Plus, there's a small chance that I'll need to have actual surgery if they can't break up the stones small enough for me to pass them, or if they can't see the stones on an ultrasound scan.

A few questions....

I know the treatment takes approx 60mins, but is that per stone, or altogether?

Did u have a local anaesthetic, a sedative, or both?

Were u "aware" during the procedure, & just how painful was it, during & afterwards?

How long was it before u saw the benefits of the lithotripsy? (ie. fewer urine/kidney infections, & less back/stomach pain, etc).

We're hoping that some of my severe back pain - which we thought was just due to my spinal micro fractures - might go after I've had the lithotripsy done... With any luck!

Sorry this is so long! Well done if you've managed to make it thru to the end of this essay, & thanx in advance for any replies, I really appreciate it :)

Ooh, & Happy New Year, Everyone!

I really hope that 2007 is a better yr for all of us *everything crossed* :)


X-posted to various LJ communities.

Current Location: My bed!
Current Mood: anxiousapprehensive
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Comments

[User Picture]
From:orecchiette
Date:December 31st, 2006 05:33 pm (UTC)
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My mother is a kidney stone quarry. She used to make them constantly but then we figured out that her parathyroid was causing a build up of calcium in her system which is why she made so many stones. She had it removed and hasn't made any new ones since but the old ones are still there. Those seem to be staying pretty still so she hasn't had any problems so far.

I'm pretty sure she's had lithotripsy done at least three times, maybe more. If I remember correctly she was put under a light general anesthetic because it's important that you are very still during the procedure so that they blast the right area. Passing the stones can be really painful because sometimes they can break into sharp little pieces or pieces that are barely small enough to pass. There is the possibility of developing scar tissue if any of the stones have a really difficult time passing. Um...I believe that my mom always starting feeling a lot better after about 5 days to a week.

Hope this helps!
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From:_chaotictears_
Date:January 3rd, 2007 05:19 am (UTC)
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Thanku so much 4 your comment :)

You're not the 1st person 2 say that during lithotripsy the patient is usually put under a general anaesthetic as u need 2 keep extremely still during the procedure, plus it's v painful...but in the literature I was sent from the hospital it said that I might be given either a v light sedative OR a local anaesthetic. So I'm abit worried now! Think I'll ask my dr about it when I'm there, but he may be reluctant 2 put me under completely 2 due my many serious health problems. Guess I'll find out soon enough tho!

The reason I'm having the lithotripsy & not just waiting 4 me 2 pass the stones naturally, is because I'm 100% bedbound my dr's think it highly unlikely I'll be able 2 pass them myself without them getting stuck - that would mean emergency surgery, which I obviously dont want... So it's lithotripsy treatment 4 me!
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From:jencw
Date:December 31st, 2006 10:45 pm (UTC)
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I am a frequent "staghorn calculi" kidney stones. I have had lithotripsy atleast 7 times that I can think of.

To answer your questions:
I know the treatment takes approx 60mins, but is that per stone, or altogether? Depends on the size of the stones. My stones were huge so it was 60 minutes (about) for each stone. But then again I Have had smaller stones and it was only 90minutes for one smaller (8mm!?) stone.

Did u have a local anaesthetic, a sedative, or both? You can ask for a sedative to start with but they will put you out. I _HIGHLY_ recommnd asking for some type of painkiller (if they can) BEFORE they put you under so you don't wake up with pain.

Were u "aware" during the procedure, & just how painful was it, during & afterwards? Nope, at all. I was completely under. No memory at all.

How long was it before u saw the benefits of the lithotripsy? (ie. fewer urine/kidney infections, & less back/stomach pain, etc). For me it was about 2 or 3 days. It hurt BAD when I first tried to pee after. Ever had a stent!?!

Seriously, if you want to know more or want "more private" details, you can mail me or message me, etc. I'm pretty open about it.



[User Picture]
From:_chaotictears_
Date:January 3rd, 2007 05:30 am (UTC)
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Ouch, lithotripsy seven times?! U poor thing!

Hope u dont mind, but I have a couple more questions 4 u, if that's ok? If you'd rather it be more private tho, feel free 2 mail me instead of replying here. My email addy is: chaotictears[at]gmail[dot]com.


"My stones were huge so it was 60 minutes (about) for each stone."

So if u had more than 1 stone, did u only have 1 done at a time? (1 stone per treatment). Because otherwise you'd have been in there for hours & hours in 1 go! So how soon after the 1st treatment did u go back 4 more? And did your stones break up easily, or did it take multiple treatment sessions on each stone b4 u could pass the little bits? Also, did u have the type of treatment where u were lying in water or on a special cushion? I think I'll be having the water bath 1, which will be v difficult 4 me, being 100% bedbound.

"You can ask for a sedative to start with but they will put you out."

As I said 2 mrsjennings above, I've been told that I MIGHT be given either a light sedative OR a local anaesthetic. Is that unusual? I do have alot of v serious health problems so they may be reluctant 2 put me under completely, but I'm sure that they didn't just decide this 4 me, because it was actually written in the leaflet about lithotripsy that they sent me... I will definitely be questioning it when I get there tho!


"I_HIGHLY_ recommnd asking for some type of painkiller (if they can) BEFORE they put you under so you don't wake up with pain."

I'm actually already on a permanent morphine pump, so all I'll need 2 do is have extra top-up injections if I'm in serious pain.


Were u "aware" during the procedure, & just how painful was it, during & afterwards? "Nope, at all. I was completely under. No memory at all."

The reason I asked this question is because as I said in my post, I recently had a horrific experience during another procedure. It was while I was having my Hickman Line changed (it's a permanent I.V. line in my chest that leads straight 2 my heart)... Basically, I was wide awake (no sedative, just a local anaesthetic in my chest) & the dr seriously fucked up, puncturing my lung & nicking an artery... I couldnt breathe as both lungs collapsed, they drained TWO LITRES of blood from my chest & I ended up unconscious & in intensive care 4 FOUR months. The thing is, I knew something was going wrong as the pain was tremendous... I was screaming & begging him 2 stop, but he was 1 of those dr's with a God-complex, & he refused 2 listen 2 me; thought I was just making a fuss. Jerk. Anyway, u see why I'm rather scared about having anything done now!


"It hurt BAD when I first tried to pee after. Ever had a stent!?!"

Yeah, I'll be expecting that kind of pain :/ Nope, never had a stent. Have u? Or did u mean a catheter? (a tube/bag 2 collect your pee)... because I've definitely had a few of those in the past!

Sorry this is so long, but thank u so much, I really do appreciate u taking the time 2 help me out with this :)
[User Picture]
From:jencw
Date:January 3rd, 2007 11:45 am (UTC)
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I had work done on one stone at a time. Once it beaks up, then they can do another xray to see if they need to do it again. And yes, I was laying on a water(?) filled pillow type thing. It's odd the procedure/prep before the lithotripsy. You get wrapped up in Saran wrap. I always left like a turkey or chicken going in to baste in my own stew! :)
When you wake up you'll be a little groggy and a little sore on the site, but it doesn't HURT... it's just a dull ache. But as you come out of it a little more it will be a little more painful. (I say a little, but I have a very high pain threshold) But if you have a morphone pump, you should be all set.
I've never woken up from a procedure, but I know what you mean about the doctor screwing up. I'll never go to Lahey Clinic again... EVER!! This is my story in the Kidney community: http://community.livejournal.com/kidneys/7947.html

Oh yes, had a few stents. They don't hurt at all, but it hurts to pee having them in! It's different from a catheter (which I had as well)... a stent is a coil that is placed in the same way but it coils into the kidney (to keep stones moving around so they don't keep growing and the other end is coiled into the bladder.

If you want I can email you but I'm a pretty open person...

Good luck to you, when is your date again?
[User Picture]
From:_chaotictears_
Date:January 7th, 2007 06:04 am (UTC)
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Thanks 4 your comment, again :)

"And yes, I was laying on a water(?) filled pillow type thing."

From what I can gather, there are two different procedures that are most common - 1 is a cushion filled with water like u had, & 1 is like a shallow bath-type thing thats filled with actual water that u have 2 lie right in.... Unfortunately, I think that I'll be having the wet bath 1. I say "unfortunately", because as Im totally bedbound & unable 2 be raised/propped up at all it's going 2 be v difficult 4 me. I think the 1 I'm having is the more old-fashioned procedure...which I guess comes from me living out in the sticks & going 2 a relatively small hospital!


"It's odd the procedure/prep before the lithotripsy. You get wrapped up in Saran wrap. I always left like a turkey or chicken going in to baste in my own stew! :)"

Um, "Saran wrap"? I've never heard of that b4 - what is it? I didnt know that u had 2 be wrapped up 4 the lithotripsy. Sounds...bizarre. Would u mind talking me thru the procedure step-by-step? It's ok if u dont have time or whatever, but I just thought I'd ask. Hope u dont mind!


"I'll never go to Lahey Clinic again... EVER!! This is my story in the Kidney community: http://community.livejournal.com/kidneys/7947.html "

I've read your story (& also some of your husband's journal from during that time. I hope that was ok?), & my God, u really had a horrendous time, didnt u? I know it was a long time ago now, but have u recovered from it? No major long-term after-effects? I do hope you're ok now.

It actually sounds remarkably like my own recent "medical mishap"...punctured lungs are NOT fun! (2 put it mildly...). I'm sorry u went thru all of that. I guess it enables u 2 better understand my apprehension at having the lithotripsy? Also, because I'm unable 2 speak, I fear that the dr's/nurses will just ignore me if I try 2 indicate that something's wrong, as they have done so many times in the past.... Another time a surgical procedure turned in2 a horrifying ordeal 4 me was when I was having my PEG (feeding) tube changed. It's done under local anaesthetic, as they have 2 do an endoscopy (camera down in2 the stomacn) during insertion of the tube & u have 2 be awake 4 that so u can gag. They give u a V strong I.V. sedative that is supposed 2 wipe your memory of ever having the op done; u shouldnt remember anything. However, the drug didnt work 4 me & not only was I completely awake during the entire operation (where they cut a hole in your stomach & sew a thick tube in2 it so u can be fed straight in2 it), but I remembered the whole damn thing afterwards. I was only 17 & I was really traumatised by it... There've been many other "incidents" too, but I'm sure u dont want 2 hear about them all - I've already gone on way too much, sorry!


"If you want I can email you but I'm a pretty open person..."

I'm v open & honest too, so it doesn't bother me discussing things in public like this, as long as you're ok with it :)


"Good luck to you, when is your date again?"

Thank u. Um, I'm going in2 hospital on Jan 9th...so in 2 days time *gulp*. I'm provisionally booked in 2 stay 4 two nights, but that could easily change, depending on how the procedure goes & how I am afterwards. God, I'm nervous! It's ridiculous really. I mean, it's not as if I'm going 2 be cut, is it? (unless something goes seriously wrong, obviously), & I've had so many surgical procedures done in the past that I should really be an old pro by now!

Thanku so much 4 all of your comments, you've really helped 2 put my mind at ease... As u may have noticed, I'm definitely 1 of those ppl that prefers 2 know exactly what's in store 4 them! So thanx 4 everything :)
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