Chronic Pain Support Group
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Well, I saw my urologist and she said that the stones were both calcium oxilate & then showed me my CT scan. I knew my kidneys had loads of stones but seeing it was another matter. She said, they were "chock full of stones," and "very rare for a woman of my age." (Just turned 45 last month.)
She said that my best option was surgical. First, they want to try lithotripsy. She said that several of the stones, mostly in my right kidney, were twice the size of my last stone which was 6 or 7mm depending on if you believe the ultrasound or CT scan. I passed 2 at once and the 1st measured at just shy of 7mm on my ruler, and the 2nd was like a bigger sized BB. Anyway, the CT Scan shows the large stones already over 10mm, and comparing it to an earlier xray, the smaller stones are growing. (In 3 months???)
So the lithotripsy is a crap shoot b/c of all the stones and they may not get all the large stones in one shot, or they may miss them, and there are a lot of things that can go wrong. I didn't understand quite why I had to have a series of lithotripsy procedures over the next year but I THINK it has to do with the number of stones in each kidney, especially the large stones.
The doctor seemed nice and we'd met once before, but she hadn't received the results of my 24 hr urine test and I was kind of stunned by the surgery deal. She said something about me meeting with a kidney doc to discuss the results of the tests but didn't reefer me to anyone. Then she said I'd be passing stones for a long time and should just call her office when I have one. Problem is, when I get them now (last 3) I am vomiting so badly that I can't keep meds down, and writhing in pain so I can't just sit in a waiting room. I hate ERs but if they're good for 1 thing it is controlling the nausea of a stone so the meds can work.
In addition, I have the RSD to worry about. As Winter nears, my foot will begin to flare, and I can't be having these damned stones too. I feel like I'm a huge minefield and at anytime a wire will be tripped. Those large stones in my kidneys can not pass, or so the doc tells me. And I had the worst time in my life with the last one which was 5-7mm. Imagine trying to pass a 10-14mm stone!
I told her I need to talk to my pain management doc especially b/c I worry so much about messing up my well managed pain! Also, she'd said I'd be "out" for the surgeries but I saw my form and she had "IV sedation" on it, NOT general anesthesia. She'd said I would be asleep but when I had dental surgery I had IV sedation and I was awake and present the whole time! I am TERRIFIED of needles and anything medical to the point where i can't watch the surgery scenes on Grey's Anatomy or even talk about details of medical problems.
So I'm due to see my PM doc next week but now I have possible jury duty (I'll know more this weekend) that could mess up not only my visit to my doctor but also my Xmas. I was a Pol Sci minor (double minor with Theater Arts) so I've always been interested in juries, etc. But this is the worst time ever. yet I hear my PM doc won't give notes for jury duty and I can't ask the urologist unless I'm passing a stone.
Then came the surgical schedule lady. She was pushing for me to do this the Thursday before Christmas- just days before we leave town. I've had these stones for years and while I understand they're bad, I don't see the trouble waiting another month. So I scheduled it for January with the caveat that I get to talk to the doctor about the "procedure". She gave me no info other than we shatter the stones.
My Dad had it years ago on one stone in his ureter, but I read online the mess that can come from having this done to your kidneys. Plus I have a 4 year old son and will need help after the procedure. Any surgery I've ever had has resulted in problems. My 1st bout with RSD came after foot surgery! I was young & for some reason that RSD went away but returned years later when I injured the same foot.
I have SO many questions but couldn't think of one as I sat with the doctor after seeing my CT scan and the Xray taken the day I saw her last time. I'm just a jumble of nerves and scared to death. I'm scared of every twinge I get in my sides or back, and scared that I'll end up having to have the 2nd type of surgery, where they go through my back and into the kidney. Heck, I'm scared that I'll pass another stone while away for Xmas, but I can't stay home b/c my 4 year old has no one here- no family at all. Neither of us do, nor my husband.
My mother-in-law's house is where we'll end up and she & I hate each other. And last Xmas I missed almost the entire celebration b/c of guess what? A kidney stone! She already thinks I'm a wimp for having RSD- this will just make her day.
Sorry to rant- I'm just so...tired of all this. I hate that my body is breaking down. My mom died at 59! I'm just so certain that something is going to happen, but I feel powerless and that is SO unlike me. I've had RSD almost 16 YEARS! But I have to say that these stones are worse than anything I've ever felt- even childbirth.
And then there's my fear of the stent. I don't know what it is or if I need one for kidney lithotripsy, but my Dad told me it was the worst part of having the surgery.
If I can get through the next week without jury duty, w/o RSD flare and w/o passing stones, I might have a Happy Holiday!
She said that my best option was surgical. First, they want to try lithotripsy. She said that several of the stones, mostly in my right kidney, were twice the size of my last stone which was 6 or 7mm depending on if you believe the ultrasound or CT scan. I passed 2 at once and the 1st measured at just shy of 7mm on my ruler, and the 2nd was like a bigger sized BB. Anyway, the CT Scan shows the large stones already over 10mm, and comparing it to an earlier xray, the smaller stones are growing. (In 3 months???)
So the lithotripsy is a crap shoot b/c of all the stones and they may not get all the large stones in one shot, or they may miss them, and there are a lot of things that can go wrong. I didn't understand quite why I had to have a series of lithotripsy procedures over the next year but I THINK it has to do with the number of stones in each kidney, especially the large stones.
The doctor seemed nice and we'd met once before, but she hadn't received the results of my 24 hr urine test and I was kind of stunned by the surgery deal. She said something about me meeting with a kidney doc to discuss the results of the tests but didn't reefer me to anyone. Then she said I'd be passing stones for a long time and should just call her office when I have one. Problem is, when I get them now (last 3) I am vomiting so badly that I can't keep meds down, and writhing in pain so I can't just sit in a waiting room. I hate ERs but if they're good for 1 thing it is controlling the nausea of a stone so the meds can work.
In addition, I have the RSD to worry about. As Winter nears, my foot will begin to flare, and I can't be having these damned stones too. I feel like I'm a huge minefield and at anytime a wire will be tripped. Those large stones in my kidneys can not pass, or so the doc tells me. And I had the worst time in my life with the last one which was 5-7mm. Imagine trying to pass a 10-14mm stone!
I told her I need to talk to my pain management doc especially b/c I worry so much about messing up my well managed pain! Also, she'd said I'd be "out" for the surgeries but I saw my form and she had "IV sedation" on it, NOT general anesthesia. She'd said I would be asleep but when I had dental surgery I had IV sedation and I was awake and present the whole time! I am TERRIFIED of needles and anything medical to the point where i can't watch the surgery scenes on Grey's Anatomy or even talk about details of medical problems.
So I'm due to see my PM doc next week but now I have possible jury duty (I'll know more this weekend) that could mess up not only my visit to my doctor but also my Xmas. I was a Pol Sci minor (double minor with Theater Arts) so I've always been interested in juries, etc. But this is the worst time ever. yet I hear my PM doc won't give notes for jury duty and I can't ask the urologist unless I'm passing a stone.
Then came the surgical schedule lady. She was pushing for me to do this the Thursday before Christmas- just days before we leave town. I've had these stones for years and while I understand they're bad, I don't see the trouble waiting another month. So I scheduled it for January with the caveat that I get to talk to the doctor about the "procedure". She gave me no info other than we shatter the stones.
My Dad had it years ago on one stone in his ureter, but I read online the mess that can come from having this done to your kidneys. Plus I have a 4 year old son and will need help after the procedure. Any surgery I've ever had has resulted in problems. My 1st bout with RSD came after foot surgery! I was young & for some reason that RSD went away but returned years later when I injured the same foot.
I have SO many questions but couldn't think of one as I sat with the doctor after seeing my CT scan and the Xray taken the day I saw her last time. I'm just a jumble of nerves and scared to death. I'm scared of every twinge I get in my sides or back, and scared that I'll end up having to have the 2nd type of surgery, where they go through my back and into the kidney. Heck, I'm scared that I'll pass another stone while away for Xmas, but I can't stay home b/c my 4 year old has no one here- no family at all. Neither of us do, nor my husband.
My mother-in-law's house is where we'll end up and she & I hate each other. And last Xmas I missed almost the entire celebration b/c of guess what? A kidney stone! She already thinks I'm a wimp for having RSD- this will just make her day.
Sorry to rant- I'm just so...tired of all this. I hate that my body is breaking down. My mom died at 59! I'm just so certain that something is going to happen, but I feel powerless and that is SO unlike me. I've had RSD almost 16 YEARS! But I have to say that these stones are worse than anything I've ever felt- even childbirth.
And then there's my fear of the stent. I don't know what it is or if I need one for kidney lithotripsy, but my Dad told me it was the worst part of having the surgery.
If I can get through the next week without jury duty, w/o RSD flare and w/o passing stones, I might have a Happy Holiday!
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Is there any chance you could get another appt with the doc that you didn't get to ask questions to last time, it might at least put your mind at ease a little. Take care and good luck with all this.
A lot on your plate at once.
Kidney stones..
All I can offer is sympathy and good luck.
Mother in law thinking you're a wimp..
Well..that tics me off on your behalf.
..I don't see how you can do jury duty with a condition that could take you out of the game at any second?
Really do hope treatment for stones goes well.
Hugs
jc
It's funny, but after rereading my post, all I can think of is that I wrote "reefer" instead of "refer" and as a former English Major it's driving me NUTS!
Regarding the travel- it's not on planes as I normally travel but a 4 hour drive to Chicago. My MIL, besides being a major bitch, is also an office manager of a clinic so IF anything happens I can't handle, she can steer me towards an ER or Urologist.
I've had stone for 20 years, don't fully understand the procedure, and refuse to spend Xmas recuperating just b/c the surgery coordinator can't fill that Thursday before December. My doc said I WILL pass stones before and after the surgery- there's just too many, and if I need to have it done while a stone is moving as opposed to stuck in the kidneys with all the others, it won't be a big deal to me. Well, I take that back, it WILL be a big deal but not much bigger than the surgery scheduled for January.
I did ask the surgical coordinator about getting answers to the questions about the surgery, and she said she wasn't sure if the doc wanted to do that over the phone or in an appt. Considering we still have to discuss my test results, I'm hoping to see her to talk about this procedure before it happens and after I talk to my PM doc.
You'd THINK that all of this would get me out of jury duty, but unless I'm actively passing a stone, it wont. And my PM doc doesn't give notes to excuse jury duty, or so I was told. My appt with him is next Thursday but my jury duty is Monday! So I've left a message with his office to see if he'd rather see me this week but so far, no call back. I don't know what to do if I end up with a long trial. But there's always a chance that I won't be assigned to a trial. Our system here is that I am sent the info and my Juror number. I can check online or by phone this weekend to see if I've been assigned. I am praying that my name is on the "excused" list.
The other thing bugging me is paying a sitter to watch my 4 year old while I'm in a jury. I SHOULD have answered the questionnaire differently but at the time, had nothing to worry about, thinking my DH could take off and make sure my son is cared for. But he's off THIS week, not next.
So, I'm praying. I'm praying that I don't get assigned to a trial. I'm praying that I don't pass a stone before January. I'm praying that my RSD stays under control and that my 4 yr old gets to see his family for Xmas. We live nowhere near friends or family & he's so excited about seeing everyone. And I need to see my own family, if only for the support. They live an hour from my MIL's so that is planned. Again- always near good medical care.
My doc never said I had to do this right away after 20 years of stones, and if I had no insurance I wouldn't be doing it at all. Hoping that I make it to mid January without passing a stone. I just had one at the end of October so if my body is at all on a normal course, I'm not due again until the end of January! That's my belief and I'm sticking to it! ;)
In any case, there's so much that has to be done before this procedure, just even between my PM doc and Urologist, that it'd never have been done in time for the Xmas schedule. That coordinator came on strong but the doctor just said if I agreed, this was the course she'd choose. The 1st course. I'm not PASSING a stone- that's another story. I don't even think the doc wanted it to happen that soon, but I WILL find out when I speak to her.
The oddest part was not getting details of the procedure. She didn't even give me a recuperating time. I read up on the internet which scared me to death, but I need some more info before January. So let's all hope that Jury Duty doesn't want me!
As an anesthesiologist, he should be able to answer some questions about what they'll use for my surgery and what he'll recommend. At least I'll get to see him before the surgery. That makes me feel better.
Considering every twinge I have now makes me think I'm passing a stone, it'll be good to know that my PM doc will be in the loop and might be able to offer me some advice. Even if I do have to leave here at 6:30am for the appt!
In my county, that is an automatic excuse, along with "are you pregnant?" and "are you a convicted felon?", or "are you family or a close friend of a police officer?"... or you can claim a hardship excuse. I did that once when my co-worker was having surgery that week and we couldn't BOTH be gone at the same time. It was a two-girl office.
If they won't excuse you, and you are in a panel of prospective jurors, just tell them you are in great pain and couldn't concentrate on the trial, and they will challenge you, which only means that you're not being chosen to sit on this jury. No problem. They want jurors who can focus all their attention on the trial.
Or you can even call in sick the day you're supposed to report. If you do this, the next time you get a juror summons your number will be very low and will definitely be called to serve.
I hope it works out for you dear.
As for the kidney stones...no experience but as someone who has had surgery, it is understandable you have many questions and do not want to be recuperating before the holidays/travel for the holidays. Regardless of the type of surgery, there will be time your body needs to heal and you should definitely speak with your PM and the doc who is doing the surgery before having it. And also at a time that is good for you! Not when THEY want it scheduled. I think you are on the right track by getting in with your PM now. But, I honestly wouldn't worry about the jury duty causing a big issue. The odds of getting on some big case that lasts a long time is just slim. Even if you get selected for a trial, most of them are short civil matters. I liked having jury duty because it only required me to sit for hours. Not sure if sitting for hours is hard for you but...I liked not having to move because moving hurts! The whole process is very interesting!
Hope everything works out for you but I have a feeling it will...all together, overwhelming but you are knocking those pieces out little by little. Get that list of questions together and even ask the doc's office if you can fax/email the list over so a phone call or face-to-face appt will be quicker and more efficient!
~Michelle
As for Lithotripsy it's very common and work pretty well when dealing with large stones. It breaks a large amount of big stones into a small pieces which are called "gravel" and that's passed more easily.
There is some soreness and bruising on the lower back area where the kidney's are, but it's not a major deal.
I hope they get this taken care of for you soon. Constantly dealing w/kidney stones is a pain.
Dentists do not use the same sedation. I am 99% sure you will not be awake.
I am so sorry for everything you are going through!!
Hope you will feel better soon.