Nesa's interview
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How did all start?
Years ago technically but not diagnosed until January of this year. (2019) Have had left flank pain for years but to make a very long story short, it was never seen in CT scans or MRI's cause they DON'T look for it, Ive done everything from physical therapy, injections, medications, chiropractor, etc. Which have never helped but of course doctors not being much help either. After having a CT done on 12-31-18, was told had 5 left kidney stones, 3 right stones and multiple pelvic phleboliths (vein stones)... And that they were small and non-obstructing and not what is causing my pain, I began researching phleboliths as I had never heard of them. I came across Nutcracker Syndrome & knew right then it fit 1,000% so went back to urologist & requested an Angio CT to check for Nutcracker specifically. It showed on that scan!!! I knew it!! Pathetic to have to diagnose YOURSELF after years but happy to validate I wasn't "making up"my pain! Problem now is even with a diagnosis, majority of doctors have never even heard of Nutcracker Syndrome!! So with lots of self research, I've found a Facebook support group and a surgeon that specializes in Nutcracker and Loin Pain Hematuria Syndrome.
Do you already have a diagnosis? How long did it take you to get it?
Yes. Via AngioCTscan, Doppler ultrasound and venogram.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Primary family medicine Urology- got me ct scans Vascular- this is a vascular issue Interventional Radiology-venogram Transplant surgeon- surgical options Pain Specialist- pain control
What has been the most useful thing for you so far?
Pain control!! And finding a surgeon who specializes in this syndrome since majority of all medical professionals have never heard of it and know nothing about it!
What have been your biggest difficulties?
Lack of knowledge amongst everyone from doctors to regular people! When you know more than anyone you meet, that gets old and extremely frustrating!!
How has your social and family environment reacted? Have your social or family relationships changed?
Basically non-active at this point which has changed everything in my life.
What things have you stopped doing?
Almost everything. Go to work then home to lay in bed most of the night.
What do you think about the future?
Scared for surgery yet gives alil hope that maybe could actually be pain free for once in my life!
Finally, what advice would you give to a person in a similar situation?
Find doctors that KNOW and most of all, be your own strongest advocate! Do lots of research and learn all that you can about your condition so you know how to better steer your care. Lastly, don't jump into any procedures or surgery until you've done research to validate it.
