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Old 05-24-2006, 04:23 PM   #1
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chronic kidney stones

I started this thread on pain management.. I see now there is a kidney section so I will post here and maybe get more help:
Hey everyone, I had a quick question.. I suffer from chronic kidney stones, I get about 4-7 every month. All my doctor wants me to do is get cat scans(which I worry about from the cancer you may get, i have had over 60 scans) He is so worried about giving pain meds, that he basicly refuses even when he sees I have a 5-6 ml. stone, anything over 6 is not passable btw. I get no more than 10 a month. People keep telling me to go to a pain Dr. I was wondering if any of you ll suffer from stones, and do Pm doctors even treat this. It is extremely painful to have a stone, and to have 4-7 every month is starting to make me feel I have nothing to live for. I have no life due to these stones and the doctors say I have to live with them and there is nothing they can do, my body just produces piles of them. Any way any advice or answers would be great...Thanks ...I read k-queen post about her stone problems, wow is all I can say.. I have never been offered any of those tests the people were talking about. I would like to know what a pm Dr will do for me, and if they treat this and what med's do they give for this???

 
Old 05-25-2006, 08:57 PM   #2
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Angry Re: chronic kidney stones

HI, I have had chronic stones also for about 5 years, at one time had 17 in my right kidney. I usually have lithtripsy (sp) two times a year because of them being so big I cannot pass, then I pass some the other times throughout the year.

MY dr. would give me meds but a lot of the times, i had to go to the er to get my pain under control.

last month, i got a lettre from my dr. that they would no longer be seeing me as a patient and I should find a new one asap, did I want my records sent to?

NICE HUH? I called and they said they were "weeding" out patients for various reasons because of the over flow. The reason I was one? I had an 80.00 past due amount I guess my insurance didnt cover. I said "I will pay it now, with C.C." they said no, it was to late but I did need to pay. but also find a new dr.

NICE- a 5 year relationship with this group pf drs and shows how much they care about their patients~

KIDNEY STONES HURT LIKE HOLY HELL!!! I wish you luck- I am just going to ER it until I find a dr.

Hailey

 
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Old 05-25-2006, 10:42 PM   #3
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Re: chronic kidney stones

That's unbelievable. I hope you can find a better Dr.

 
Old 05-26-2006, 09:34 AM   #4
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Re: chronic kidney stones

It seems like doctor's are lazy and realy don't want to take on the difficult paitient's. After finding these forum's and reading about various tests you can get and all the info, I went back to the Dr and just asked about some of them..his response: Are you telling me how to do my job? I left crying!!!

 
Old 05-26-2006, 11:19 AM   #5
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Re: chronic kidney stones

It is sad when doctors treat you unfairly. What ever happened to that oath they took...
You can't even feel like you may get a good one if a neighbor or freind suggests one to you. For example my husband and I both used the same doctor's medical practice after our long time family doctor retired. I had to find another because I was treated so badly by this doctor because i have some ongoing medical conditions that need continual visits. I also left his office in tears. I was suppose to be getting a physical and some tests done. When the doctor came in and asked what I was there for he actually blew up!!!! Said "I have no time to do a physical...I don't do physical's today. When did you make this appointmnet?...no way I'm booked for months with physicals!" But with my husband he is a charm...very concerned takes all the time my husband needs and so forth.
So I know how you feel.

 
Old 05-26-2006, 08:19 PM   #6
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Re: chronic kidney stones

The older doctors are set in their ways.. The doctors that have been in practice for 15- 20 years sit back and play golf and have their trophy wives and just want easy quick paitient's and their money. Seems young er doctors right out of school are more willing to take time with you. BUT the younger one's seem afraid to perscribe pain meds from all the horror stories they hear in school. There is no winning, until you get lucky and find a great doctor. It might take me years and alot of money, but I won't give up .. BtW sometimes it seems female doctors will spend more time and have more paitience...

 
Old 05-27-2006, 04:23 AM   #7
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Re: chronic kidney stones

Have any of you found a female urologist. There are none in my area. The closest one to me was like 45 minutes away. I would love to find a female urologist for my care.

 
Old 05-27-2006, 04:55 AM   #8
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Lightbulb Re: chronic kidney stones

Wow, I wish there were some words that I can say to help most of you. I suffer from kidney stones and have for some time now. I used to get so much pain from these little buggers. I have watched my diet and that helped out alot, because I have the calcium oxalate stones, there are numerous foods that I steer clear from, and if I crave one of these foods I will eat it in a small moderation and that is it. I won't eat it again for a whole month. I write down everything I eat when I eat it. Sounds kind of sad, but if you don't want pain then you will do anything to keep the pain at bay.

Another thing I do also is I take a few vitamins that help in keeping my stones from growing too fast and make them pass before they get too big. I take a multivitamin, vitamin b complex, b 6, magnesium, potassium, and a flaxseed oil.

I told my urologist that I was taking them and she got mad at me, and I told her that I haven't had any kidney pain and I actually felt better than I ever have. Well she took my xray and the kidney stone was still there, but it had never grown, where my kidney stones always grew so rapidly. So you know what she told me after she took my xray? I should stop taking all the vitamins, they are not good for me. So I believed her, so I stopped taking the vitamins for 3 months, I went back for another xray and my stone had formed bigger by 2mm and I had formed another one.

She then told me, oh we need to do the eswl. I thought, NO WAY, I started my vitamin regimen again and I haven't had any problems.

I am waiting for my 6 month check up to come to see what happens and when I see that my kidney stones are better. I will be going to another urologist.

She was mad because I was helping myself with some vitamins, and she new she wasn't going to make any more money on me.

Well, I hope I shed some light on some of you and maybe you should try this, it wouldn't hurt and the vitamins are good for you too.

 
Old 05-28-2006, 11:23 AM   #9
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Re: chronic kidney stones

I have and still do the perfect diet thing, the water thing all day the vitamins the home remidies, everything and nothing helps. My main thing is getting these doctors to perscribe pain med's for me. There is nothing worse than having a 6 ml stone in my uretur moving down and have no pain med's. I have to get in the floor and roll a round for hours sometimes. Hot bath's help and heating pads, but I also get horribly nauseous and have cold sweat real bad when I have pain. They have no problem perscribing Phenergan for the vomitting but they tell me to take advil for the pain lol..I am seeing a pain Dr. this Wednesday will post back after I see him. Also none of the Dr. have ever given me any tests except cat scans. I learned about the 24 hour urine test and all the other ones on here. I just dont get it

 
Old 05-31-2006, 07:27 AM   #10
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Angry Re: chronic kidney stones

I came across your post and felt compelled to tell you a few things. 1. A PM doctor should absolutely TREAT YOUR PAIN. That's their job. If they don't; keep looking. But, I will say that pain management is tricky, because your body will develop tolerance to pain meds and you wind up in the cycle of never being able to control your pain. I might suggest that this is why your doctor hesistated (or refused) to prescribe narcotics. But I can't inside your doctor's head.

Incidentally, I am in Ocala....I think I read your location was Ocala. I would be curious to know who your PM doc is, how it goes and most importantly, who your former doctor was so I can avoid him/her in the future. I am dealing with stones myself right now. I had a 6mm stone in January and went to the ER. I received an ANTI-INFLAMMATORY shot there. Not a narcotic. Now, ask me what an anti-inflammatory will do for a kidney stone? I think the shot just made me hurt worse (right into my hip - long needle).

I wish you all the best and I feel for you. Don't give up! It is so very hard to find a good doctor. I'm new to Florida and don't know anyone here so it's hard to just pick a name from the phone book, especially when I don't have insurance - I have to pay whether I like them or not.

Please let us know how it goes.
Lisa

 
Old 06-02-2006, 05:37 PM   #11
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Re: chronic kidney stones

Well I have to say I am thrilled I went to this pain doctor( my first pain doctor ever) He was so nice and laid back . He spent one solid hour with me, to be honest I have never seen a Dr. more than 5-10 min. He was very honest and went over every fine detail about me and about pain and his practice. I almost cried. I told him that I also suffer from tmj and severe endometriosis. I told him these two things I could live with, and that I was getting a hysterectomy in January anyway. He said well why suffer until January. So he worked that pain in the plan too. He also has a physical therapist in his office too that will be helping with the tmj as well. I have surgery for my tmj soon as well. Anyway as far as the stones go he recommened a good stone Dr that will give me PROPER tests. In the mean time this is what he gave me for the pain: oxycodone 15 mg 1 tab three times a day. Also Methadone 5mg 1 pill three times a day. Phenergrane for the nausea that I get from pain AND the med's. This is by no means huge amounts like some peoiple on here, but I will say my tmj pain is gone all day when I take the med's and so is my endometrriosis. The stones however come randomly through the day, sometimes i even pass painful grain daily.The meds help ALOT with stone pain, the smaller cramping and burning. However, when the stone is in my ureter and moving, the meds arent strong enough lol. When I go back, I am going to ask for those meds to be taken less. Maybe 1- 1/2 pills a day instead of 3 cause I dont think I need that much. I will be asking for something stronger or to take double when I get the severe pain. Which I wont need that many pills for the month. Hope this makes sense. My urologist is in Ocala his name is Dr. Jo. He gave me 1 min and 30 sec when I went in last . I am going to be my own advocate for now on and not be pushed around. :P..well you know what I mean...The PM Dr. I went to see is in Tampa his name is Dr.VanDercar.. Tampa Pain Clinic. Its like an hour and a half drive, but its not to bad. If you ever try him out and like him, and want to ever car pool let me know. He is realy realy nice and does not tolerate people being in pain, he has written many articles as well. He also has a website [ REMOVED ] I think. He came out of retirement as a psychologist and a anesthiologist and a general Dr. to treat pain suffer's after his daughter had a car accident and couldnt get decent pain care.When I see him next I will get some adjustment's on my meds and will hope to be better. After my surgeries I hope to be 80 % pain free. Let me know what ya think and if you try him. Sorry for long writing, will check back in later

Last edited by moderator2; 06-03-2006 at 06:52 AM. Reason: doctors by name, city and state ONLY - please read and follow the posting rules

 
Old 06-02-2006, 05:44 PM   #12
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Re: chronic kidney stones

Oh btw antiflam drugs have never helped me either. The Er's in ocala suck btw.[ REMOVED ].
Oh and the anti-inflamitory they gave you was probably called Toradol, they almost always give that in the ER to stone patients. It does seem to help alot of people I must say. But it never helped me. I forgot to mention, that out of all the stones I have had, my husband last month got his first stone. A 5 ml stone, which is pretty big. I have never been so happy, I did a cart wheel and jumped up and down. When he was rolling in the floor moaning, I was thrilled and laughing. It was better than x-mas. He now knows what it feels like. A few times he made cracks saying, OMG they cant hurt that bad. I used to want to murder him when he said those things. He deserved every second of pain he had, AND I gave him zero sympathy and did not one thing to help him. I know this sounds awful, but after years of wise cracks, he deserved it. A few times he got realy irratated when I woke him up to take me to the hospital. He had the nerve one time to ask me why I didnt wash his baseball uniform when I was on the floor trying to pass a 6 ml stone. First off my house is immaculate at all times, but when you feel sick you cant get up and do your normal things. Of course I made him suffer for these things BUT it was so heavenly when he got that stone. Now he looks at me with total sympathy. .Okay rant over


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Old 06-04-2006, 04:29 AM   #13
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Re: chronic kidney stones

I have kidney stones and chronic pain. This has been going on for over ten years. I have had one broken up and I have been going through hell the past three weeks, (more pain than usual).
Before I moved to Oregon, I had to fight the doctors to get them to believe that I was having pain. They always stated that the stones were two small to feel. (3-4 mm). I ended up with a 8x3 stone that was acting like a ball vaulve. This stone was broken up.
2 years ago, when we move to Oregon, I saw a PCP and he diagnosed me with chronic kidney stones. I was then sent to a kidney doctor (who was not much help) and a pain doctor.
My everyday medication is oxycotton (20mg a day) and 1/2 vicoden twice daily. But they have had to double the doses due to the pain that I am having know. Because I am on so much pain meds new doctors think that I am lying to get the pain meds.
I also went to a urologist on Tuesday and he laughed at me. He told me that my flank was not sore it was my bottom rib that was causing the pain. He also stated that the ER was lying to me about the size of the stone and that the stones were only 2-3 mm not 6x3 mm.
I am losing the chance to be hired on and considering trying for disability because of this pain.
I did alot of research on Kidney Stones and found this book that is really good.

NO MORE KIDNEY STONES
By John S Rodman, MD
Cynthia Seidman, MS, RD
Rory Jones

I found alot of helpful information in this book.

I hate this pain. Sometimes I feel like driving myself to a mental institution and addmitting myself because I am so tired of this.

 
Old 06-04-2006, 08:36 AM   #14
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Re: chronic kidney stones

No More Kidney Stones is a great book. I have bought and read a few and that one was by far the best. I could really relate to a few scenarios in that book.

I haven't had the chronic pain like some of you, but when I get stones passing there are times where I feel like the doctors think I am crazy. I hate to even ask for pain meds. I went to my PC doctor for stone in my bladder and she gave me 12 tylenol with codeine. Mind you, she has never given me anything for pain ever. I should have just called my urologist because he would have probably given me something better for the pain.

Also, I am as troubled by the frequency and the urgency to urinate as I am sometimes troubled by the pain of one leaving my kidney and entering my ureter. I have only been getting the colicky pain about 1-2 times a year. But I pass little stones that drive my bladder nuts at least once a month.

 
Old 06-04-2006, 02:28 PM   #15
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Re: chronic kidney stones

What is it about these arrogant urologists? I have had a similar problem with mine and ended up getting a second opinion from the Mayo Clinic. While all they could tell me was that I have "chronic stones" (brilliant!), they did suggest that I go to the pain clinic. My appointment is on Tuesday, so I really can't tell you what to expect; however, when I left the Mayo Clinic, they gave me a supply of Fentanyl patches along with Toridol and Dilaudid to control the pain. For the most part, that combination has been doing the trick. Although, I am still in an excruciating amount of pain (not sure how I could be with all this dope in me), it has definitely saved me from a couple ER visits so far. Fat story skinny: doctors aren't the Gods we wish they were. They have no real solutions for people with chronic stones and are afraid of getting their patients hooked on pain medication - so instead they fire us as patients like the person a couple messages up or they take out their frustrations on us. It's not fair, but it's the way it is. Personally, I would much rather be hooked on pain medications than endure the pain. Not to mention the fact that your life gets completely put on hold for these things. I'll let you know what happens after I go to the pain clinic. Maybe they'll have a solution I can pass along to you.

 
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