Aa
A
A
A
Close
Medullary Sponge Kidney Disease (MSK) Community
515 Members
Avatar universal

Argh...stones back

It's Julia here touching base.  Stones are back -- which is to be expected but somewhat devasting nonetheless.   Small one blocking the right ureter and some big ones in the left upper pole plus a million tiny ones all over.   My doctor suggests doing the same procedure that we did last fall -- aka Dr. wolf's procedure.   I asked about potential downfalls of having this done often -- say once a year.   He said the only risk he saw was trauma to the ureter itself from the instruments.   And that isn't a huge risk.   He didn't think there was any higher risk to the kidney itself by extracting the stone with scope.   I personally would like to avoid the lihtoriptor for the rest of my life.  So I'd rather be scoped and end up with stents on both sides -- but that's just me.   Will let you guys know later what we end up doing and how it goes.  Keep all of us suffering in your prayers.  -- julia
8 Responses
489228 tn?1291535054
I am soo sorry Julia...,I will tell you Dr. Wolf said basically the same thing that the procedure can be repeated and that it was less damaging then continual litho.  I know he already redid Hollie's one kidney because she did not get much pain relief.

It is important that you do understand though that this procedure does not get all the stones like we initial thought.  This was devastating to most of us... esp since those of us who went to Dr. Wolf thought they were all gone.  His explanation was that I miss understood the procedure, basically it releases the pressure and removes those stones at the top of the pyramid.  However the calcifications in our kidneys go deeply into the collecting ducts and they can not get them all.  This leaves lots of seed to grow in there!!  Though a HUGE let down, I am still so thankful the Dr. Wolf acknowledges our pain even without a stone in the ureter and has given us another treatment option.I am sorry, I remember talking to you via the phone however I may not have explained it as clearly to you as I thought I did.  When I found out I still had calcification I tried to call all still in touch who had had the procedure.

Let us know how things go, Please keep in touch! Julia, one thing we have all found recently is that all of us but Hollie have been very very low in Vit D.  Now that I know more about this I think Hollie was low normal though too.  I have a new research paper and they are finding this connected to so much chronic illness.  Normal is 30-80
I came back a 14.  The key is for us, normal Vit D levels help put the calcium in the bones and not the urine.  Too high Vit D however can result in more stones.  Vit D level problems can often go along with MSK because of the many metabolic issues
we have.  Testing for it is very easy and most doctor's don't, so it important to ask.

If your getting ready to go through more procedures etc this would be the time to have them test for it too!

Hope you are feeling better quickly, I know surgery and stents are no fun however hope that it gives you the same but longer relief this time!

Shelly

PS we now have a facebook so if you have one please add our medhelp support group
to your profile!  This is an easy way to keep up with one another!
Avatar universal
Thanks for the info re vitamin d.  I have appt with my general pracitioner for month after surgery so will talk to him then   Meanwhile we are waiting for this special scope to do the longer procedure.  While I'm out, i'm all for having every inch of both kidneys looked at.   So will be the end of this week or beginning of next.   Am muddling along until then.   I'm so much better prepared this time and i'm not at such a worn down stage like last time.  This feels choicefull as opposed to desperate.  thinking of you all.

P.S. would love to keep more in touch but I just don't do the whole facebook thing.  Too overwhleming.  
489228 tn?1291535054
I understand... just let me/us know how your doing,

Julia, you mentioned another scope so do they have a new one now more versital
the the Holmium laser?  That would be amazing!

Shelly
168348 tn?1379360675
COMMUNITY LEADER
Ugh on the stones.  sorry to hear this

C~

My Vit D was 9 !
168348 tn?1379360675
COMMUNITY LEADER
How are you doing?
Avatar universal
Surgeyr was monday and went much better post op than last time.  We did both sides and took out a lot of stones from the lining and in the collecting tubes.  Uro said that there wasn't any scarring in my ureters and none in the kidneys either.  He could see the spots where the stones had all come whoosing out last time and new stones were forming.   I was able to pull the stents myself without any trouble 4 days post op.  Off narcotics for the first time today.   Still running a very low grade fever but pain is greatly reduced.   Hope everyone else is feeling well.  -- julia
168348 tn?1379360675
COMMUNITY LEADER
THIS Is wonderful news for an upate!!!

Great to hear the good news .. pls. keep us updated!

C~
Avatar universal
Wow! Amazing. I hope you are feeling well and continue to do so. Great to hear such good news. Can they put you on a med. to help you in preventing future stones? I don't think I could ever pull my own stents. Geessh that must hurt like heck.
Take care... Cara
Have an Answer?
Top Digestive Answerers
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Learn which OTC medications can help relieve your digestive troubles.
Is a gluten-free diet right for you?
Discover common causes of and remedies for heartburn.
This common yet mysterious bowel condition plagues millions of Americans
Don't get burned again. Banish nighttime heartburn with these quick tips
Get answers to your top questions about this pervasive digestive problem