Hi Everyone! It's been awhile since we talked about pain management, (at least from what I can see). My doctors and I are starting to run out of ideas. I am going to apologize in advance if this is a little long, but I am getting to the point where I am desperate. I am always in pain (or so we say that we are part of the lucky 10% who expierence pain more than just the kidney stones.) However, my pain is always on my right side. I occansionally get a stone on my left side, but it is never nearly as painful as the right. That's just a little back ground on me although I am sure you guys all have your own stories that are probably extremely similar.
What is everyone doing for pain control? Has anyone found anything that has helped them, even if its just a little bit? (EX: I am not expecting to be completely pain free by any means but if it would bring down the pain levels enough, at least where it would be more manageable, that would be awesome.) Is there anything that everyone's doctors are talking about trying? Any new ideas anyone has come up with?
I have defintely had my fair share of pain relieving proceedures. We have tried everything short of taking the darn thing out. (Which I am told by my nephrologist at the Mayo Clinic is a horrible idea. He said that not only is that a life threatening operation, of which it could put extra pressure and tension on the other kidney who still has MSK, but it could give me the "phantom pains" associated with a missing limb. Also, if a doctor would give me a transplant, there is always a chance that your body might not accpet the new kidney and then you have a patient that has gone from 2 functioning, although extremely painful, kidneys to someone who needs dialysis.)
I had heard of someone a few years back who had a experimental proceedure where they cut the nerves to her kidney. In theory, if he cut the nerves to the kidney, the brain wouldn't to be able to feel when it was in pain. It would be able to tell if she had an infection or something like that. (Her doctors would need to keep a very close eye on her to make sure she wasn't doing any other damage.) The Mayo Clinic doctor who preformed the surgery, stopped doing it because it didn't have enough of a success rate and the girl who talked about having it done, was still getting pain and plenty of infections, as I can recall.
So, now for things that I have personally tried.
I just had the trial for the neurostimulator (again), which didn't work for me. The eletric feeling or tingling only seemed to make the hurting kidney intensify. I have used a tens unit in the past for a previous back injury I had when I was young, but it doesn't seem to help with this type of pain either. The first time I had the stimulator trial, the rods where placed under my skin but on top of my kidney area. It drove me crazy. The only way I can describe the sensation was having someone massage the most painful area on your body, and they NEVER quit or moved or changed direction. It began to make the pain worse.
Thistime, the rods where placed in the epiderual area, only to still get no relief. Athough I could change the sensation and the "massage" feeling, it staill turned my kidney it a tiny hurting ball. Not only did it not help, but it made physically dependant on everyone. I can still take care of myself, (I can climb up the starts, carry a pilliow, etc) but with thr stimulator I couldn't sit up or even lay flat. I couldn't walk up stairs, or stand still for long than a few minutes. It was just an absolute nightmare and from the moment after he pulled it out of my back, I began to feel so much better.
In the past, I have had the nerve block shots (a lumbar block, etc) and all of those type of shots seem to make things a lot worse. My pain (as I am sure with everyone else) is almost like a sharp, or stabbing pain deep inside my body that although I may hold and try as hard as I can, I can't seem to touch it. Its so deep under my muscles and everytime we try to do something to the muscles around my kidney it makes those muscles hurt ON TOP OF the already exsisting kidney pain.
I have had the epideral shots but my pain doctor tried to put lidocane into it (at least the majority of the medicine was lidocane.) Besides the numbing sensation I felt in all of the muscles around my body and surrounding my kidney, I was still in agony. I had a Cleveland Clinic doctor tell me that there are different types of medicine he can try to put into the epideral space instead of the lidocane, that may help, but I am not sure what.
The only thing that helped me for a short period of time (short meaning 6 months or less, since I have had this condition for the past 8 or so years) was a primary care doctor used to give me pain and nausea shot in the office. My mom would sign for me saying she was going to drive me home and make sure I wouldn't do anything for the next 12 hours. This would help me kick the bad cycle of not being able to keep down fluids or any of the pill form of medicine I needed to take. These shots would be able to get through the night and best yet, most of the time, the shot would almost "jump start" the pills that, at the time, I wouldn't be able to keep down. This would help me be able to keep on a positive cycle where I could start keeping down the nausea pills again and therefor I woull be able to keep taking other kidney prevention pills again. It would help me stay out of the hospital and dreaded ER. (the ER doctors, although some of them try, they can't help too much, at least from my experience.) They can give you a bag of fluids, and a quick shot, but for me at least, the only thing they can do is call the doctor to see if they want to check you in or not. However the primary care doctor was bought out by another major company and no longer carries the shots. So, it was back to the drawing board for me and my pain doctor. (I should note that every time my doctor would give me these shots, he would call my pain doctor to let him know I was in agony AGAIN and asking for permission to help me. I am starting to think my pain doctor is just getting extremely overwhelmed and almost frusterated, although he hasn't actually given up yet.) My primary care doctor looked into the pain clinic to see if they could give me the same shots, but apparently no pain clinic gives any such shots or even has any in the building for everyone's protection.
I think that about sums it up for the pain procedures at least. I have had some many different MSK trail procedures, diets, kidney stone removals, litho, and so much more on top of seeing too many doctors to count. But at the moment, I am only concerned with getting the pain back under control.
Also anyone else notice the stones coming at different seasons more than others? I used to get my in the winter and the summer. I never go outside anymore at the most hot and humid points of the summer. I try very hard not to get "dried out" or dehydrated for fear of forming stones. However, for me, the worst part of the year is the winter, January and Febuary to be exact. I can't seem to beat it no matter how hard I try.
Thanks again for all of your help! Hope you guys made it til the end. I'm sorry I am just getting so desperate to try to find something that its all I think about right now. My thoughts and prayers are with each and every one of you. Hopefully some one very soon, will find something that will cure us or something. I know medicine changes every single day. We all need to keep hope! Thanks again for listening too.
My thought and prayers are with each and everyone one of you.
I've been dx with MSK for 20 years, but it hasn't been until last November that I started with the constant, almost always there pain. I know that's not very long, but I'm getting my education and I found a group on FaceBook. It's a closed group called "MSK". They've been talking about a new procedure done by some doctors called a laser papillotomy. The Dr. goes up with the scope and lasers out as many stones and some of the calcifications that are "trapping" stones. It seems to help some patients. One of the ladies had has 4 years of pain relief from it although it's not projected to last as long as that. We make more calcifications, as you know, over time.
I'm going to be seeing Dr. Wolf at U of M in a few weeks and he is one of the top surgeons who does this surgery. I think there are some others, but don't know who they are. Check out the FaceBook page. It's a hopping' group and the (mostly) ladies there have been so encouraging to me.
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