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Medullary Sponge Kidney Disease (MSK) Community
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489228 tn?1291535054

What's Happening out there? kidney pain and heat

It has been so quite lately. I am afraid the problems with getting the threads in the e-mail maybe be the cause
so hope medhelp gets that fixed soo!  Hope all are out having a great summer!!

I notice I can not tolerate the heat much, can you?

When it is really hot I have severe kidney pain!!  Do you?

Shelly
12 Responses
168348 tn?1379360675
COMMUNITY LEADER
I've found I need to up my fluid intake in the heat .. that helps. I've gotten some nasty pings and pangs in the heat and while doing gardening!

The emails should be fixed soon . It was unexpected software issue when we had a new release the other week.  

Hoping we are all doing well and this is why a bit slow on the community ?!

C~
805104 tn?1242338271

Hi all,

(Is very sheepish cause I havn't been around lately....SORRY!!!)....I hope everyone is doing well......yep, this hot weather..( aye, we even get the sun in Scotland,lol) is causing havoc with my body...I have noticed that I am getting more twinges and back ache...i'm having to drink more too....i'm sweating to the point of it dripping off me (lovely vision for you all,lol).
Just an update too...I am now seeing an Endocrinologist, investigating for Cushings and/or Hyperparathyroid, maybe Diabetes Insipidus?
Have had results back from 24hr urinery Calcium- path lab range top end should be about 4.9mmol per 24 hrs and mine 17.9mmol...oh 'eck!!
I am awaiting results of blood tests for Prolactin, Liver Function Test, Serum Calcium, Kidney Funtion and Thyroid and maybe others can't remember, PTH blood test has to be done in hospital.....waiting for result of free urinery cortisol test too....

So, I have been a busy Bee....crikey, you think nothing is being done, bit like waiting for a bus...none come for ages and then loads come at once,lol...

I do hope everyone is coping with their MSK + co-morbids, it ain't easy but we are all strong on here, so keep your chins up,

love to all,
Take care,
Sam xx
695104 tn?1442197188
It has been so hot here, too...and I can't take it either...I get so sick...seems to be worse, what with the Lupus as well as my uro issues, I feel like I will never be able to enjoy being outside...oh well, thankfully I live in the times of air conditioning...I can't imagine how my ancestors made it "back in the day"...I guess the same way we all get thru, you do what you have to do...I must admit I am a bit jealous of my hubby, who has a nice tan...and loves to be outside and could be out all day...lucky guy...
Take care, and I am so ready for autumn...
C
489228 tn?1291535054
Yeah, the e-mails started up again.. maybe the computer gremlins read my post, LOL!

We lived in Fla for 20 years.  We did not have air and I had all my kids in the summer too, June, July, August and September.  It was miserable but I could take it... not any more and we live in Missouri now.  My mom bought me a window unit and I only turn it on in the heat of the day.  Box fans blow the cool air in the windows at night and early morning.  Hubby doesn't really understand why I can't take it like i used too...
maybe it is a progression of MSK maybe it is just age.  I do know my DOC was MAD, when we did not have air several years ago!  One of the few times I heard him growl,,,
under his breath, LOL.  I know several of my meds. The antibiotics esp say not to ge in the sun.  When I have I get a rash etc. but I looked it up and there is a risk of heat stroke!  So I don't think it is something to play around with.

We have had a heat wave here in MO so I daily am thankful for air.  Funny my younger too kids have had it cushier just because of my age etc... but then maybe God knew Drew would go to Iraq, in that heat... would you believe the make our guys wear full body vest, and a extreme amount of hot and heavy equipment in the heat over there,,,
many now collapse more from heat related issues then snipers.  Drew told me soldiers give each other IV"s of fluids to keep going.  SO when I try to think about them on the days.. I am hot and Hubby doesn't think it is hot enough to turn the air on.

(I did learn that when the air is on, I don't run the dryer.  I only run one load at night or early am.  The rest go on the line.  I checked the bills and our electric bill went down not up because of this!!)

It is soo good to hear from you all and see life on the board again!

Shelly
Avatar universal
I recently went to my Urologist who will perform another lithotripsy on July 22, I had shown him the information you so graciously gave me.  He commented on the procedure that Dr. Wollf has done on other MSKers to provide relief, telling me that it is not being done any more...is that true.
I am a little nervous about going through this again and having another stent, most likely more infection and terrible pain.  I do know that it is coming this time instead of waiting for an attack.
Still I am confident that having as many stones removed as possible will be somewhat helpful to control my ongoing pain.
The heat also affects me...cannot get dehydrated or I pay for days.
Keep cool fellow MSKers and feel well and take care of yourselves.
Pauline
489228 tn?1291535054
That is NOT true.  There are some doctors who don't believe it works mainly because they don't believe you can have pain from stones in the kidney.  Dr Wolf performed the
surgery on me personally last Aug.  He will perform it on those that he thinks medically qualify for needing it if you are willing to go to Michigan.  Several others have had their doctors do the procedure within the last year as well.

AFTER MUCH PERSONAL RESEARCH I WOULD HAVE TO RECOMMEND DR WOLF'S PROCEDURE OVER LITHO... the main reason is the actual impact and damage on the kidney itself.  In there they can see and get more stones directly with the holmium laser and the tech,. Dr. Wolf uses. When Dr. Wolf did my procedure I had NO STENTS even though he did both sides.  The right side worse then they other did have internal bleeding,  The left one did not even have pain postop!

Litho is also tough on your kidneys,  since it pound them as well as the stones.
many MSKER'S get worse when this is done over and over.  I am patient not a doctor but I would encourage you to maybe talk to Dr. Wol'fs office.

Good luck and keep us posted!

Shelly
Avatar universal
Have you had your thyroid levels checked??? cara
Avatar universal
This procedure is common. My Nephro from Ny was very fimilar with it and Wolf. It is the same as litho. as far as we see, just a hand held one. This procedure is used in NJ & NY... my Nephro says NOWAY as I would be getting one every year or so he says the same the dust makes more. Best Cara
489228 tn?1291535054
NO not exactly.  I have had both litho and the ureterscopic laser.  Litho is done
externally, using water in a tube placed near the kidney and a laser which pounds from the outside in, and basically like you say pounds the stones to dust. Dr. Wolf's procedure is done with the Holmium laser.  It is amazingly smaller then previous lasers that go in through the urethra, and make small holes over the collecting ducts, thenrelease the many calcifications within them.  No it can not get all the stones, but each of us have had it found that the stones pop out, in clusters. 18 our of 20 of my collecting ducts were calcified. The laser does not leave you with the same amount of junk to pass initially either, though  passed more then I expected.

In truth this procedure is not for everyone, and you should read the article with list
of treatment suggestions first.  I have had my thyroid checked. For me however the procedure along with getting my Vit D levels up and antibiotics has given me much of my life back.  Post litho by the way my kidney function etc. did not improve, post Dr. Wolf's procedure I had significant improvement in all areas of my kidney function tests.

The point here is that we have pain that is not understood  by the medical community
as a whole.  Together we look for treatment options that can help deal with the pain starting with the least invasive and dangerous first, such as checking your Vit D levels etc.  However when a patient is living in constant pain this procedure is an option as well.  Before having it done I did a lot of research coming it to litho and the damage to the kidneys.  At least from the research articles I found the procedure using the holmium laser caused less over all damage even on repeated procedures then litho since it is precise and able to deal with the stones directly not pounding them through the kidney.

Keep in mind many doctors do not accept this procedure by Dr. Wolf but the reason is many do not believe we have pain without stones in the ureter or a UA positive infection.  I personally think as listed in the article in the healthpages that a multi-treatment approach gives the best results.

Hope whatever you decide to do you find a solution to your pain issues, that is the goal we are trying to reach through reserach!

Shelly
Avatar universal
Oh I so very much agree there... our pain is most certainly ignored many times. It truly is a shame. It is the same for any Litho. as I said sometimes it may be necessary... for the right person and the right size and position of the stone. Best to avoid them totally if you can, due to the dust and fragments left in the kidneys.
For instance, if I had done a Perc. in 2004 I most certainley be better off today. I had 2 staghorns, infected, located in the lower R/ pole.... ummm very bad choice on the Docs. part..... ignorance on mine for not getting a second opinion in 25 years.
                                                                           Best,
                                                                            Cara
Avatar universal
PS...... I did not read your post entirely so I must add.

  Yes I am aware and very educated on all the different types of Lithotriposys. I have had the external Litho.ESWL, including the older "bath" type, and also the hand held (used with and without basket). The one you had is called Power Suite Holium laser.
ESWL is a minially invasive treatment (per say haha), in which shock waves are generated outside the body and focused on the urinary stone using a litho. These shock waves than break the stone into smaller fragments and "dustlike material". Common sense will tell you that you will than make more stones from whatever does not pass.
Power Suite holuim laser, is direct contact with the stone via: a endoscope and fiber so that the tip (of the fiber) can come into direct contact with the stone. The intense light energy, breaks the stone into smaller fragments and "dust". Therefore as above you will need further treatments down the road and you are taking a direct hit to the medullary. However, you are indeed correct. Some of the stone residue can be flushed out with this method.
Than there is my prefrence a Percutaneous Nephrolithotomy, which can only take out the large stones contained in the kidney itself not the medullary. It is the preferred method for struvite (infected) & large stones located in the upper or lower poles.
  My Nephro. did send me Wolf's articles. I really am not a canidate as I will have no more lasers or litho's ever again of any kind. I am very happy to learn that you have experienced the same as I with the ESWL's (the disadvantages not only for MSK but all stone formers) and I am very happy you are now feeling better after the laser.
  I have been very low on my Vit.D due to the Graves. I am happy to say that through lots of sun this summer I am back to a normal lab on that. I do not know what I will do after summer is gone as I have heard from many that the supplements are hard to take, and many have bad side effects.
I  I do agree that probably the laser causes less damage than the ESWL's, but "less" is not good enough for me. We have so many great stone docs. out there that are working on new cures everyday. I have choose for now to try to wait.
  I am currently on meds. to hopefully prevent future stone formation. To date my labs are great and the meds. are intact. When we are absolutely sure that my stone formation is down due to the meds. I will most likely have a kidney clean out. Not the medullary but the kidneys via: basket or Perc.
  I am aware that many docs. do not accept or aknowledge Wolf's procedure. However, we all must make our own choices in what we feel is best for us.To me common sense will say impacted medullarys will cause pain, though many do not accept this either.
  You should talk to Wolf about the names I gave you. They are the ones involved in so very much research on stone disease. They are our future. Fred Coe, Charles Pak (now retired) & David Goldfarb are all prevention (& reasearch) guys... Nephrologist's. Mike Grasso, Jim Lingeman (the absolute best in the world who I believe holds a 0 % infection rate through out all his studies) & Bagley are all the surgeons, Urologists. They are all known throughout the world for there wonderful, skilled work and research. They are truly caring docs. also.
  I do know that Grasso, Lingeman and Bagley can all do this exact same procedure as Wolf.However they use it rarely, and with much caution. Well I am so happy you are feeling better and wish you the best. You know, we are all lucky us MSK people. It could always be worse. Look at all the poor people with Cystinuria. Now that is a much worse disease than we have.
                                                           Best,
                                                           Cara

  
489228 tn?1291535054
I appreciate your input and again ask that you send me any treatment options
these doctors are suggesting for MSK and pain.  I am thrilled to find these names and
to research their input and info, on this!  Honestly I would love to read any articles that you have in full text they have written. That is the whole point of this forum is to find solutions and answers.  I think it is important to support those doctors who do recognize the problems associated with MSK and to develop treatments.  I hope to hear from you and read any research from these men that you have.  I would even be very interested in their experience with biofilm infections as well.

I hope together we can help to get the research info out there to the patients and
that help find answers.  Most of us do not just live with MSK but also
other illness as well, which is interesting too.   I am on Vit D supplements and have had no problems with them, I am monitored closely by my doctors but feel much better with the higher levels.

Shelly

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