Medullary Sponge Kidney: A Patient’s Perspective

If you want to learn about MSK or kidney stones in general, you’re in the right spot. Personally, in my 8 years of dealing with this disease I’ve never found such an informative and supportive website produced by physicians. As a contributor to the website, I will be writing occasional Patient’s Perspective Posts. By doing this, I hope to make you feel less crazy and alone because I know it’s a scary diagnosis and disease.

My posts will aim to give you ideas on how to manage your MSK physically and emotionally, from a patient’s perspective. I’m by no means an MD so please consult your physician before trying any of my ideas. I’ve learned a lot about the different diets, pain management methods, things to drink, what to avoid, and simple ways to make yourself feel better and I can’t wait to share them with you. I also want to discuss the dire need for more research on this disease, as a lot of information currently out there is old and/or inaccurate.

But first, I’d like to tell you a little about myself.

I’m Kayla, a 24 year old girl from Minnesota who was diagnosed with Medullary Sponge Kidney (MSK) when I was 16 years old. Apart from living with MSK, I try to lead a somewhat normal life. I graduated from the University of Minnesota with my Psychology BA last year. I’ve worked in medical/public health research for many years, and am currently working full-time on an obesity-prevention/healthy behavior promotion study called HOME Plus at the University of Minnesota as the Project Assistant and Evaluation Coordinator. When I’m not spending time with my couch and heating pad, I enjoy going to the beach with friends, shopping, and trying new places to eat.

As I mentioned previously, I was diagnosed with MSK at 16 years old after I was rushed to the ER in extreme pain one summer. My mom carried me in because I couldn’t walk, and on a pain scale of 1-10 my pain was an 11. This was my first experience with a stone, and because of that I was admitted to the hospital for 2 days for fluids and pain management. We thought it would be a one time ordeal, but we were wrong.

My next experience was exactly one year later during the summer. I woke up with the worst stomach ache that only got worse as the night went on. I couldn’t walk again from the pain, I was nauseous, and had a high fever. We went to the ER again and I was admitted for 4 days with a nasty kidney infection.

I was referred to a local nephrologist who put me on a slew of medications and told me to “drink, drink, drink!” None of it helped. During one of my many CT Scans, my nephrologist noted my kidneys appeared to be spongey and was diagnosed with MSK. She said it was a “benign” disease that would not give me any troubles.

Since then, my MSK has only gotten worse. Now my stones, pain, and infections don’t only happen during the summer or twice per year; they happen every month. In 2009 I was blessed to see a local urologist who not only believed me, he was willing to help me. Dr. Manoj Monga at the University of Minnesota was the first doctor to acknowledge my pain and give me options. I was scheduled for two surgeries (one on each kidney two weeks apart) in summer of 2009, which went amazingly well and we removed 9 stones total! They put stents in following the surgeries and let me tell you there is NOTHING more excruciating than a stent! Peeing is the most painful and awful experience ever with a stent! Even though recovery was difficult, I actually was stone and pain free for a year and a half­. It was some of the best time of my life since the diagnosis. I followed a low-sodium, high calcium, lots of water regimen (probably not as closely as I should have, but hey – I felt good!)

Sadly, as with most MSK patients, my stones formed again and the pain and infections came back with vengeance. Dr. Monga had taken a position at Cleveland Clinic and I was left with a urologist who didn’t know what the heck to do with me. We decided to do the same surgery minus the papillotomy in the summer of 2011. It was the biggest waste of time and I regret doing it every day. He only removed 1 stone because the rest were too imbedded in my kidney. Since that time, I’ve been horrible. I have extreme pain every day and I have a UTI every month even though I am on a daily antibiotic. At this point, I’m simply existing and managing my symptoms the best that I can.

I’m basically an 80 year-old woman in a 24 year-old’s body. I come home from work and sit on the couch with my heating pad and pain pills. Without narcotic pain medication, I couldn’t make it through the day and I hate that. In my next post I’ll discuss how annoying it is to not only be taken seriously and not as a drug-addict and on how challenging it is to actually get help!

I hope you found some use in my story, and know that whatever your story is you are NOT ALONE. I mentioned I created a Facebook Group and I encourage you to check it out and join: http://www.facebook.com/groups/Spongelife/

I can’t wait to hear from you and continue writing on KidneyStoners.org. If you have any ideas on what to write about, feel free to comment.

I also made a really ridiculous (thanks, pain medicine!) YouTube video that people seem to really enjoy about my daily battles with this disease, from kidney stones to kidney infections to unexplained daily pain, and my plea for more research.

YouTube Preview Image
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45 Responses to Medullary Sponge Kidney: A Patient’s Perspective

  1. Kiki says:

    Wow, I thought I was suffering with this all alone and was diagnosed with MSK 10 years ago. I also have 2 ureters on my left kidney and one on my right which all are functional hence constant UTI’s, I have kidney damage from an infection that was wrongly diagnosed. I have stones in both kidneys that are not quite big enough as of yet to do anything about! Constant pain on my right side and I am so tired of it and can’t imagine living with this when I’m old! Some days better than others but it’d hard to shake the exhaustion of this disease! I hope you all well and strength to get through the hard times and hopefully we can get some answers and or relief in the future!

  2. Kim says:

    Wow, and I have thought I was suffering this alone!! I am 41 and was diagnosed about ten years ago with MSK, I also have three ureter’s, two on left and one on right, stones in both kidneys and constant pain, always tract infections. I always have pain in my right side! I have had so many tests and hopefully after a new urologist today things may get better! I’m tired of antibiotics that make no difference and may possibly cause me to be immune in the future! I sympathize with all dealing with this strange disorder, however, now I know I’m not alone! Please keep us updated on anything that makes a difference and or relief!

  3. Dawn says:

    Hello all! I just found this site and I am so sorry others suffer from this horrible disease. I wouldn’t want to wish it on anyone, but as bad as this sounds I am glad I am not the only one. I am 38 yrs old, I was diagnosed at 30 yrs old but I have been suffering from MSK for many years just no one could tell me what I had. I have multiple medical issues so they just told me it was due to one of the others, then finally I got an answer. I am dealing with the same as the writer of this page. I have been to the Dr. and to the ER many time and I am now considered a drug seeker. Even with the actual diagnosis I have been told it will not cause any harm or any pain, but honestly I think they just don’t understand the disease, cause just like y’all I know it does cause pain and all the time. I have a slightly different type of MSK though, I know there are different types. Some get infections, stones, cysts and what not, mine is an actual calcium build up where there is a wall of calcium as well as the spongy kidney. Like I said I am so sorry to see y’all have this as well but I am glad I’m not alone. I do hope they can figure something out so help us be more comfortable with this disease, I am searching for a Dr. that will be open minded to listening to me about my symptoms and not just telling me what they think they know of MSK.

  4. Yaimy says:

    I was just diagnosed last week at 29 years old after about 4 uti this year and finally a kidney infection that rushed me to the ER. Im terrified of everything i been reading, i have experienced painful urinary track infections and i have seen blood in my urine but i have no idea if my passing the stones , i have a lot of stones in my kidneys, more in one than other and i just have never seen them . I just started seeing a nephrologist and will see a urologist soon. How you know when u are passing the stones what are the symptoms ?

  5. Crystal Gast says:

    I’m a 41 yr old woman who was diagnosed at 16 after a 3mm stone was logded in my urethra. I have had lithotripsy 3 times and I have had over 120 stones removed in several procedures. I have had countless uti’s. I had a great group of doctors who used to take care of it but, in Oregon things are pretty bad, as far as finding competent treatment. I was doing very well until I lost my med coverage. I had the pain and infections under control with liquids, diet and a pain mamagement regiment. But when I was given a new internest he took me of everything and said unless I have a blockage I shouldn’t be in any pain of any kind. Now everyday is a living hell as I live with constant flank pain and colic and spasms. I guess since it doesn’t affect them it doesn’t matter.

  6. christina shaw says:

    In may I had my one and only baby then soon after I was getting very painful pains couldn’t even sleep at night went to doctors and they gave me a ultrasound well it came back I have the sponge kidney in both of them go to a specialist soon to hopefully get this figured out since my regular doc has no idea about it

  7. Mel says:

    @ Anne-Marie I find my pain is more before my period too!!! I was diagnosed at the age of 30 and I have passed at least 32 stones! Talk about pain!!!!! I am glad to find I’m not alone in this. I thought I was the only one in the world. I have not found a nephrologist to help me, the last one looked at me like I was a two-headed monster when I asked FMLA papers due to the recurrent and frequent stones. He did give them to me and I only used 1 day of FMLA!!! He also told me to manage the pain with Tylenol or ibuprofen, how sweet of him :-/

  8. Yes! Finally someone writes about kidney stone pain.

  9. karen Doran says:

    Hi all,
    I too have the dreaded MSK, have suffered issues since I was a baby and when I was expecting my own baby suffered with the first kidney stone ! and ever since that I am on the clock to get the lithotripsy, I have a wonderful nephrologist who is brilliant and am ready to see a new urologist soon, I am doing good at the moment but the stones are growing by the day and I am terrified having to do the lithotripsy again as my kidneys didnt like it so much the last time, it wrecked my BP ! but I am thankful as I know that I am lucky enough not to suffer pain every day with this disease, it is a genetic thing as I have my father and 5 cousins who all had kidney issues.
    Good luck and try to battle on another day.

  10. Anne-Marie says:

    Hi I’m 27 and had my first dose of stones at 22 which caused partial kidney failure and my left kidney went down to 20% function due to being obstructed by a bothersome stone and I was in hospital a week. I then made a full recovery and had bad pain on and off for years until two months ago when I was back in with the same thing :(
    The doctor mentioned kidney disease but I was to out of it on pain meds to take it in. He said I’d passed all the stones but when I got hone I passed many more (at least five) which worried me a lot as the pain was worse than ever due to a complex infection that was also present. It took weeks to recover and I’m still having hours of really bad pain but msk doesn’t seen to be recognised by NHS doctors! Does anyone from UK have any advice? Or any advice from all countries would be greatly received as I’m at end of tether with this constant pain! And even prescribed painkillers aren’t touching the pain ( tramadol, diclofenac, as well as paracetamol)
    Also does anyone else find the pain worse before and during a period?
    Thanks x

  11. Quarry says:

    I’m glad to have found this sight and as a sufferer of kidney pain from MSK, I feel empathy for all! I would rather have my twins again! I’m so sorry for the amount of true and unbelievable pain you are dealing with. I hope research will teach physicians more about the symptoms, and pain MSK sufferers deal with on a daily bases. I am a 38 yr old mother of three, and would love to have a day without pain. My nephrologist has tried many things but because of the lack of knowledge we are at a dead end for now. Take things day by day and don’t give up trying to find a physician who is able to think outside the box! Best of luck to all!

  12. Laci says:

    So glad I found this site. Just diagnosed last night with MSK and I am not really sure what to think. I’m scared but seeing that I’m not alone makes me feel so much better. Thank you for your stories!

    • karen Doran says:

      I am sorry you have been diagnosed with this dreaded disease, I know its hard not to be scared but you have to take each week at a time and sort out each episode at at time and thats all you can do really, watch your diet and drink loads of fluids and keep positive. Good luck.

    • Briana says:

      I went into my doc the other day for upper abdominal pain and she ordered an ultrasound. They called me today saying they didn’t know why I had abdominal pain but did I know that I had MSK? After explaining it to me, it made me realize why I was constantly getting stones. Same as Laci, I’m just now researching this and hopefully can figure out a diet to help reduce stone formation. My last stone was blasted almost 2 years ago and no problems since then, so I’m hoping I can stay stone free for a while.

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