Medullary Sponge Kidney Disease (MSK) Community
Pain management
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Pain management

I finally got into see a pain management doctor last week. For the past week and a half I have been having constant pain on my left side. I was slightly nervous about going to my new pain dr because so many people have treated me as though I am a drug seeker. I expected this one to be the same way. BUT, he was great! He stated that he has never had anyone come into his office presenting with this kind of pain, and that he didn't really know how to handle it. But, they prescribed me a big amount of pain medicine to keep me from having to go to the ER as much when I am trying to pass one and it hurts so much. They also wanted to try me on Levasin, a smooth muscle relaxer they give people with bladder spasms and interstitial cystitis. They seem to think that it may help with the pain as well. They are also wanting to try a procedure in which they will put an injection in through my back and numb the nerves on the side of my spine that transmits to my kidneys, hoping that by doing this it will help my pain I have in my kidneys. He has no idea if this will work, but he said if it does then eventually he can numb them completely. Also, he suggested that if that doesn't work, he can put a medicine pump in me that can distribute pain medicine directly to my kidney.

I wanted to gather everyones opinions on this and see what other peoples' pain management docs were doing for them. Please let me know if you have any other options we could try. Thank!

Summer
w/ calcuim oxalate stones
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14 Comments Post a Comment
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489228_tn?1291535054
Yes, nerve ablation is A LAST RESORT OPTION TO CONTROL THE PAIN.
The test will tell you IF it will work for you.  It is important though to find the cause
of your kidney pain first... even with pain management.  
Have your read the articles on the health pages?

1. Keep hydrated and watch your meat intake


2.  Have then check your Vit D levels

3.  Try natural or script antibiotics long term

4. IF pain levels continue, try a TENS unit,


5  Then consider the procedure they discuss above or doing Dr. Wolf's procedure to remove some of that calcifications.  Just consider your options
at that point.  Nerve ablation is not something you want to try as your
first thing!  

I know some time back a MSK patient had a procedure for the pain in which her kidney was removed and the retransplanted back in her own body without the nerve
connections.  I wondered though how that would help the infection esp. low level bacterial infections etc. since it did not deal with the root issue etc.  Last I heard
her potassium levels took a nose dive and they are struggling to keep them up...
that is a very important things to control!  This could be from the reconnecting process...
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489228_tn?1291535054
Whoops my son is talking and I distracting me lol!

All I wanted to add is that your not alone and we all can get very
desperate to get out of this horrible pain!  PLEASE though take
one step at a time and do the least risky first!

Shelly
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1073373_tn?1255970243
who is this doctor and where are you located? I cant find anybody who will treat me please help?!
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Avatar_f_tn
I was referred to Comprehensive Pain Specialists. They have offices in Hendersonville and Nashville.
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1073373_tn?1255970243
I have been trying to get help from my doctors for a while now, and no one will help me. they say my pain isnt real. Do you have any suggestions?
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489228_tn?1291535054
PM me and I will send you several articles that might help.  If those articles are not enough pm me again and I have a research article I am working on with a letter I will give you for your doctors.  This is really all I can do at this point, but the articles have many references for your doctor to prove the problems in your kidneys etc.

Also if you go to our MOARKIC  website there is a menu item for MSK, with a letter/article I wrote in 07 on the biofilm theory.  I now have a lot more info etc, on that!

It took a long time to get my docs to listen too but copying the many people here that are hurting a long with some of these articles they now believe me.  The article on the procedure by Dr. Wolf even if you decide not to have his procedure done it does state however very clearly that he selected only MSK patients with pain and no stones in the ureter or signs of UTI, only those with the calcifications in the collecting ducts.  This is a significant affirmation of our pain issues.

Sorry, I did not get back to you sooner.  Having some issues of my own lately!

Shelly
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Avatar_f_tn
Just wanted to leave everyone a quick note. We did the nerve procedure last thursday. It did not work for me. I woke up the next day with my left side aching so bad I couldn't breathe. I go back to my pain doc on this month to see our next option. I pray all of you are doing great!

Summer
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2055495_tn?1330516735
im 17, i dont know what to do for pain. im always in pain on my left side. my doctors are always looking at me like my pain is just in my head and i want pain pills. maybe some of our doctors should get online and read what people with MSK have to say it is painful i cry everyday and i have to deal. but my heating pad works super well when i cant get pain medication! my doctor says if my pain is bad go to the e.r. but it is expensive adn i dotn want to have to wait in the waiting room full of really sick people and for the doctor to tell me, i dont know why your in pain im only 17 i have been having this problem since i was 8 and it has just gotten really bad when i turned 16 =[ is there anyone i can talk to i need a friend that understands!
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168348_tn?1379360675
Hi Emmy,

A good suggestion is to repost your question on the top of the community so that it gets more visability because this is on a very old thread.  But I saw you and want to say hello and say how we can all relate to your pain.  Our tests show all is normal (no stones) sometimes yet it hurts so much.

Here is a link to an article that may be helpful put together by our members

http://www.medhelp.org/health_pages/Urology/Why-Does-it-Hurt-so-Much--yet-No-Stone/show/383?cid=185

C~
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Avatar_f_tn
Can you send me the info? Plz ***@**** for my dr. ?
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Avatar_f_tn
I recently found out that I have MSK as well as my twin sister.. I have horrible pain in my left side I have been in and out of doctors offices and hospitals and it seems that people dont really know enough about it to treat it properly If I hear one more time that my pain isnt caused by MSK Im goin to scream. Any suggestions can help. Thank you
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Avatar_f_tn
Hi Emmy, I'm sorry you have to go through this horrible pain at such a young age.  I also have MSK but was not diagnosed and did not have any symtoms (symptoms) until I turned 38.  I know the pain you are feeling and how doctors don't believe you.  Is there anyway you can find a uro that will work with you or go to a pain management doctor to control your pain?  There are good doctors that will help...just have to look.  There is more information on the web too...print it and bring it when you get an appointment.  I know it's difficult but hang in there!  Thinking of you!
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Avatar_f_tn
i am 28 years old and have 4 young children i live with the pain daily and constantly going to er and uroligists and to pain management i am weak and tired as well with this it is struggleto do daily tasks. i have had numerous kidney surgerys and stone removals and lithotripsy done i go in every few months when i cant take the pain anymore i am also sick at my stomach all the time. i didnt realize there was so many had this disease. i dont feel alone now.
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Avatar_f_tn
I have lived with msk since all my life but i started getting kidney stones at 16 i am now 34.  I dont think puting a pajn pump or numbinh thr nerves a good idea.   We need to feel the pain so we know what is happening.  Most of my stones are small around  point 3 or 4 cm which are still painful but we still have to get checked for infections which could cause kidney failure and if we have a blocked stone which can also cause kidney failure...  yesterday i was just in for lipotrispy for that problem.  Masking the symptoms would be a bad idea...  
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