I wonder if someone can help me please. My son was diagnosed with MDKD at my 20 week ultrasound, he is now 5 years old and as fit as a fiddle and healthy, he has had rotuine check ups every year and has been absolutley fine up until this point. Today we had his yearly ultrasound which showed just a tinny bit of tissue on his left side as the affected kidney has shrunk as was expected,but on looking at the right kidney there were lots of black "holes" which were present on his left one when this was diagnosed. I asked the radiographer if that was cysts now on the right kidney but he wouldd not give me a straight answer,he told me i would need to wait till the specialist wrote to me in 7-10 days time, he said it might be because his bladder was full so sent us to the toilet to empty the bladder and go back to the room for the remainder of the ultrasound. He scanned the right kidney again and we could still see these "holes" , he started to measure these but still wouldnt tell me if they were cysts or not,so i am beside myself with worry as i know bialateral MDKD is incompatiable with life but i dont know if it can happen 5 years later? Please can someone answer this question for me, i have been crying since we left the radiographers room this afternoon,any help would be greatly appreciated. Thank you.
You should not have to wait 7 to 10 days to find out what this might mean. They may not have final results for awhile, but the specialist should talk to you today to let you know what the possibilities are. I can't imagine how horrible it must have been waiting just the one night. If your specialist doesn't call back today, find another specialist who will consult with you right away. I am so sorry.
K.
I have no experience, other than a similar 'waiting game'... to hear from the Doctor, after what was a very uncomfortable reaction from the clinician performing a test on my infant.....
., which is why I google'd this MDKD condition. I don't know what any of this means, but there are examples of Kidney ultrasounds on the 2nd kidney for such MDKD cases..where the 2nd kidney has what look like the black holes you describe.... meanwhile it is really one of these other treatable conditions..... so I don't think what you saw can be interpreted wih any certainty other than something is going on with the 2nd kidney.
So for some hopeful thinking, here are some excerps from articles on google about the 2nd kidney of an MDKD case:
"the normal kidney can have other associated conditions such as vesico-ureteral reflux, uretero-pelvic junction obstruction, or uretero-vesical junction obstruction. The risk of an associated abnormality is as high as 51 percent. These are all surgically correctable problems and in some cases may resolve with observation alone. "
Also spotted , on google, an Abstract on this issue...t I think means it can be hard to see the difference between an MDKD condition and one of these other treatable issues:
"Diagnosis is usually easy as MDKD has in the vast majority of cases a striking ultrasound appearance including enlargement of the kidney and multiple renal cysts. However, differentiation from obstructive uropathy may be difficult, and we made a total of five erroneous diagnoses. "
Also, here is a link on facebook that I stumbled on ... seems to be lots of people talking about their experiences with the disease ... maybe you can reach out to some of them ...
http://ja-jp.facebook.com/group.php?gid=42415440788&v...
Our prayers are with you for a good diagnosis and prognosis.
That is a huge amount of stress to carry, mom. You are in my prayers. I would call the specialist's office and explain briefly the situation to his front desk and plead (briefly) with them to have him call you asap - 7-10 days in writing is a very long time to wait, indeed. (And it is normal for the radiologist to be unable to explain anything to you, so he was not being horrid.)
The radiographer can't tell you what they are because he/she is not allowed to make a diagnosis, but the doctor can. If it was anything serious then they would have the doctor see you right away. My son also has multicystic dysplastic kidney on his left side, so I know how scary things can be. He has to have an ultrasound every 4 months as well as a follow-up visit with his nephrologist because his bad kidney isn't shrinking like it should. I would try calling up your son's specialist and ask him if he can go over the results with you as soon as he can. Take care!
