Procedures and decisions

    • Anonymous
      September 4, 2008 at 3:31 am

      I have a couple questions for those who have had kidney stones with cidp. Tonight I found out I have a kidney stone unlike I have ever had in the past, its on the leftside vs my usual rightside, its 5mm and causing me alot of pain and nausea. One question is, when asked if I would rather go through the process of a stent being placed or having the litho procedure performed, what should I ask about each procedure? I know of the procedures and have had family members go through both, with not so favorable outcomes with each. I’m stuck with equal bads for both and equal end results for both.
      I spent the evening in the er, and after I was released I have an increase in problems, I didn’t want to spend any more time in the hospital than I absolutely have to.
      I also found out from a ct that I have a rather large mass in my leftside abdomen. The er dr wants to get the stone and pain under control first then have me follow up with my pcp for the mass. He says it is of unknown origin because there really is nothing on that side of the abdomen to be overly concerned with, other than the possibility of my ovarian cancer came back.
      Anyways, can anyone give me some advice or insight as to what I can expect from having either one of these procedures performed, and what might I expect with the cidp-will there be anymore problems with one procedure vs the other?

      And wouldn’t you know all this news comes on the day my husband was cleared by his dr to go back to work as an over the road truck driver:( .

    • Anonymous
      September 4, 2008 at 6:53 am

      Hi Cheryl! I have had 5 kidney stones over the years. Ohhhh don’t those suckers hurt! One night just out of the blue, I felt the urge to urinate and after I went to the bathroom and went back to bed, I started getting really bad pain on my left side. And the pain was getting intense. Next thing I know was me laying in doubled over in extreme pain and was screaming. My husband called an ambulance because I could not move and was in hysterics.
      Got to the ER and they did a CT Scan and found 2 large kidney stones. No way of passing them either because of their size.
      The other 3 I had before that were tiny and passed okay but felt like your uretha tract was getting ripped apart. It’s hard to explain the pain until you experience one.
      I chose the sand blasting procedure and that helped alot. If this is your first time having these, then I would go for the sand blasting procedure. The stent procedure would require much more extensive surgery. Being that there is a mass of unknown etology. We know that cancer can spread fast if your opened up in surgeries. I would get the other procedure done with the stint after I find out about the mass and if I had another bout of large kidney stones.
      The sand blasting procedure is much less invasive on your system than the stent procedure. Easier to do and less recovery time also. Being there is a mass, I would choose this procedure first.
      Either way both will hurt. But the sand blasting would most likely be the best option.
      I feel for you! Gosh! I know how bad that hurts! 😀 Been there and I know how those things feel. Painful as heck! Can’t say a dirty word here but the night I had those two. I was screaming at the nurses to give me something for pain. Tears were rolling down my eyes. And the nurse kept telling me that she had to get my vitals and meds list first in the computer. I laid there for an hour rolling in that hospital bed. And words were coming out of my mouth that I never use!
      My husband kept telling me to calm down and I even told him where to go that night! LOL! I thought I was in my last stages of labor pains and was not pregnant! I had the small ones before but they passed and I did okay. They hurt but those two big ones were not my cup of tea.
      Hope this helps Cheryl and I pray that mass they found is just something minor and nothing major. So I will keep you in my prayers! Hugs

    • Anonymous
      September 4, 2008 at 8:05 am

      Cheryl,

      I’ve never had a kidney stone but have heard the horror stories of pain they bring. Just wanted you to know, I’m thinking of you and hoping the best for you. I hope you can get some decent pain relief and that everything turns out well.

      you’re in my prayers…

      Stacey

    • September 4, 2008 at 9:07 am

      Hi Cheryl,
      I have no advice to offer you, but can offer you love and stregnth. We will pray that your pain subsides and that the mass is indeed nothing. Keep us posted.
      Dawn Kevies mom

    • Anonymous
      September 4, 2008 at 9:48 am

      Cheryl,
      Was told I have kidney stones but no flare ups yet. From what you are experiencing I hope I pass mine before they get that big. Hope you can have it taken care of soon so the pain will be gone for you and that the mass you have turns out to be benign.
      Praying for you
      Shirley

    • Anonymous
      September 4, 2008 at 10:55 am

      Hi Cheryl, There are things in the left side of the body in addition to your ovary. But first things first. Find a good urologist, tell him your current gbs/cidp issues and discuss your options and fears. He will advise you on the safest procedure to do, but get it done now-the pain is wicked.
      My prayers are with you on a good outcome with the mass also.
      Tell your husband congrats on going back to work-and that likely is important to him, but there is one more important to a trucker than his truck-you Cheryl! Take good care. Sending you a big hug.

    • Anonymous
      September 4, 2008 at 12:51 pm

      Hi Cheryl,

      I can share my experience at any rate. The week before I was diagnosed with severe cardiomyopathy, I suddenly developed severe flank pain, so bad I was even vomiting. Was taken to the ER and had a CAT scan, thinking kidney stone. They didn’t find that, but did find a huge 11 cm. pelvic mass. I was sent to a urogyn. cancer specialist, who refused to operate as I was an horrible operative risk with the heart stuff. The pain subsided, and they never did find a stone. He thought I might have something called a urachal cyst, which I had never heard of. A few months later they decided to do a CAT scan guided drainage of this mass, to check for ca cells. My CA 125 was negative. It turned out to be just a collection of old blood and no ca. I postulate that it was a ruptured ovarian cyst, but we will never know. What I do know is that it was nothing serious in the end, and with such a huge mass, who would have thought that it would not be worrisome. I hope this is the case for you too!

      I hope you get the stone taken care of asap, as I know the pain from kidney stones is supposed to be one of the most severe pains imaginable. And you certainly don’t need anything else on your plate. Keep us posted.

      Mags

    • Anonymous
      September 4, 2008 at 2:31 pm

      Hi Cheryl,
      We have lots of experience with kidney stones in our house. Hubby has CIDP and has had stents placed during one kidney stone episode. The proceedure was pretty uneventful. He was sedated when the stents went in, and also when they took them out. It all went well with no pain or aftermath from the proceedure–just tedious with the waiting at the hospital.
      His second episode he had lithotripsy and that was really straight forward as well. And I had kidney stones and lithotrypsy too. It’s a non-event concerning pain during the proceedure. Neither hubby or I felt any discomfort during the lithotrypsy, and for both of us the lithotrypsy worked well. I would say that the lithotrypsy is more efficient with less risk of infection since there is nothing entering the body, and my husband had a recovery period of feeling tired and was on antibiotics with the stents. My kidney stones were awful on the pain scale so it was wonderful having them zapped in a little half hour proceedure. When I went to emerg. with the stones I made an ass of myself due to the unbearable pain. Paced non-stop and the doctor was busy charting at the nursing station (which in my state of mind indicated he was ignoring me on purpose ) so I yelled across the emergency room for him to come and do something pronto. I am normally ever so polite and obedient, but those stones turned me into a wild woman. Good luck Cheryl.

    • Anonymous
      September 4, 2008 at 10:17 pm

      Thanks for the info All. I think I’m going to opt for the lipto-or maybe just sit in my brother’s whirlpool and kick it up to high:D The drs want to get rid of the stone first, since it is what is causing me sooo much pain. Yeap I’ve had the small right side stones before-those were painful but nothing compared to this leftside one. the mass isn’t scar tissue, per dr. since I have nothing in the way of ovaries or anything, had a total hyst due to ovarian cancer and large tumor back in sept 04, there is a chance that the oc came back, will be getting the scans to see if the lung congestion could be another problem area-better not be!! Other than the spleen there really is nothing on my left side, everything is gone. Fingers are crossed that maybe the cat scan showed up a hairball:D Ya just gotta laugh at all this crap, its too depressing to know there are more things to conquer with the little energy I already have.;)
      I was visiting my parents all day today, they are such rocks!! but its starting to stress out my Dad, which I don’t want!
      I’m supposed to be at the hospital right now for pain control, but my hubby let me sleep tooo long, soo will hopefully pass this monster on my own or have to have my brother take me later.
      Hubby Has to go to work-financially he has to do it, otherwise he would be here for me, which is what I really want him to do anyways-go to work that is-I know I can get through this with the help of my bro and sil.

      Thanks again everyone!! 🙂

    • Anonymous
      September 4, 2008 at 10:54 pm

      Hi Cheryl, Good attitude! Sending lots of encouragement, prayers and hugs to ya (and a huge cry of “UNCLE”)!

    • Anonymous
      September 5, 2008 at 6:37 am

      I’m laughing with you for it to be a hairball :D. They say you can find humor in anything, I don’t know how with so much pain but you did it. All kidding aside I am praying for the best for you and that you get out of pain soon.
      Shirley

    • Anonymous
      September 5, 2008 at 10:15 am

      Cheryl,

      I have absolutely no experience with kidney stones so can offer no advice but I can offer you my support and concern. Keep the positive attitude, take one day at a time. Get the stone issue resolved and then worry about the mass. Saying prayers that it is nothing serious and something easily remedied. Cyber hugs to ya!!!

    • Anonymous
      September 5, 2008 at 11:23 pm

      I have had the same procedure someone mentioned.Lith? It is just putting you into this tub of water and then you are put to sleep while they break it up .
      They zapped me once before putting me to sleep and kind of jumped just because I did not get any kind of warning and it just shocked me. So they said good bye and I was out. No after effects at all. Depending on how many times and where it is you may have some bruising on the back. They did put a stint in me earlier for a few days but that was just to move the stone somewhat and keep things open in case it passed. I was not put to sleep for that and it was uncomfortable. So just get it done asap and it will be over. I do not think most drs do this procedure but we had a trip planned in just another week and I did not need to go thru the pain in anothr state. Good luck
      Joanf

    • Anonymous
      September 6, 2008 at 7:35 am

      Hi Cheryl! I will keep you in my prayers and hope things will be okay and not serious! Looks like we both are in for a challenge these next few months. I hope that they can get you feeling better soon! Keep us posted and let us know how you are doing! I just hate to hear this news for you too! A big cyber hug heading your way!

    • Anonymous
      September 6, 2008 at 10:57 am

      i am reading my natural healing book right now to see if it has any good info on stones. it only has prevention info. i wonder, though, if this one thing may work for the stone itself?

      the quinic acid in cranberries makes the urine acidic, which prevents the calcium and phosphate from forming into insoluble stones. i wonder if it is capable of decreasing the size of stones that are already formed? do you know if your stones are calcium stones? 75% to 85% of stones are.

      there is a bunch of info in my book about preventing stones. i assume your doc has given you info on that in the past, when you had you other stones, but if not, and you are curious about what it says, then let me know. i will post it on here for you.

      good luck on your health concerns. you must be stressing out over all of this. know we are thinking about you.

      take care!

      jamie

    • Anonymous
      September 6, 2008 at 11:22 am

      Just a short note. While living in Ohio before moving to Ten. is when my stone was broken up. Afterwards the doc always did a 24 hour urine test and a kub(exray of that area) plus I was on triamterene Hctz/caps to keep me from getting anymore stones. Upson moving to Tn. family doc did not think I needed a nuerologist as he would just say SO WHAT THAT YOU HAD A KINDEY STONE.
      I went anyway and they must be in cahoots as he said quit taking that medicine and just drink plenty of water which I already do. Well…..that pill also was used for blood pressure which I did not know and was never told mine was high as that pill kept it down. Well my headaches started all day and night for at least a month or more before someone took my blood pressure and it was over 200/ and over 100 for the bottom figure. Then my husband contracted shingles (probably from stress as our builder was never around to check on the house(that is another story) and never even asked if my pressure pill was working he gave me almost 3 months ago so we quit him and have a new doc who is wonderful.

      Long story short we still do not know if the pill was needed or not but I am on it again plus 2 other blood pressure pills per cardiologist and no urologist. I drink lots of water and do understand that cranberry juice is good for it too. . I still have one stone left that I know of and so far I am ok. It has been about 8 years now.

    • Anonymous
      September 6, 2008 at 11:28 am

      [QUOTE=joanf]Just a short note. While living in Ohio before moving to Ten. is when my stone was broken up. Afterwards the doc always did a 24 hour urine test and a kub(exray of that area) plus I was on triamterene Hctz/caps to keep me from getting anymore stones. Upson moving to Tn. family doc did not think I needed a nuerologist as he would just say SO WHAT THAT YOU HAD A KINDEY STONE.
      I went anyway and they must be in cahoots as he said quit taking that medicine and just drink plenty of water which I already do. Well…..that pill also was used for blood pressure which I did not know and was never told mine was high as that pill kept it down. Well my headaches started all day and night for at least a month or more before someone took my blood pressure and it was over 200/ and over 100 for the bottom figure. Then my husband contracted shingles (probably from stress as our builder was never around to check on the house(that is another story) and never even asked if my pressure pill was working he gave me almost 3 months ago so we quit him and have a new doc who is wonderful.

      Long story short we still do not know if the pill was needed or not but I am on it again plus 2 other blood pressure pills per cardiologist and no urologist. I drink lots of water and do understand that cranberry juice is good for it too. . I still have one stone left that I know of and so far I am ok. It has been about 8 years now.[/QUOTE]

      Correction : I had been off that pill for 3 weeks not months. with no improvement.

    • Anonymous
      September 6, 2008 at 8:57 pm

      Hi Everyone, Part of the Eagle has landed!!!:D I passed a dark stone-in the shape of a mammoth-sorry thats what it really looks like:) about the size of my pinky fingernail. Unfortunately there are more to come!:eek:

      Jamie, no I don’t have any idea or info on stones, except what all here have told me! My other stones all passed on their own. This time has been the worst by far. The cranberry juice didn’t help any, I drink it all the time anyways. This is the first stone I had to have dxed by a dr and ct. And its a good thing cause otherwise I would never have found out about the mass in my abdomen.
      As far as changing what I eat, I probably wouldn’t change anything, I already use sea salt instead of salt, I don’t drink pop, candy is limited by weight control, and there is no way I’m going to stop drinking milk-I need the calcium for my bones and they out number the chances of getting another stone. I eat healthy and very little now as it is. Maybe thats why my pcp has never given me a strict diet to follow:) he knows I’m too ornry to change just on chance I might get a stone.
      My Dad has stones, so its hereditary, and others in the family have them on occasion.
      Now if I can just get the rest out I can then deal with my other new found friend.

    • Anonymous
      September 6, 2008 at 10:10 pm

      Well congrats on the first one going down the drain, Cheryl! May the others soon and painlessly follow. I think I read somewhere that the cranberry juice kidney stone prevention thing has been proven to be incorrect. I may be wrong though!

      Mags

    • Anonymous
      September 7, 2008 at 5:41 am

      Ohhh I know that had to hurt passing that sucker. They are sure not fun having! Even the tiny ones hurt but the larger ones are bad too! I hope you wake up today stone free! And keep us posted about the mass. I hope it’s nothing serious! Hugs