Forum Replies Created
July 11, 2012 at 11:36 pm in reply to: Anyone have this finding on mri? Circumaortic left renal vein? #2575
Hi DR. Diane, I’ve tried to send an email to get instructions on how to send my films to the email you provided, but haven’t heard back as of yet. If you are still interested in viewing films and have another email addy i might send them to, please let me know. Thanks so much!! Leaking 2 long.. PS. I was evaluated for spinal leaks and have those films as well. Myleo with 7 leaks found in thoracic area. Let me know:) Thank You!June 10, 2012 at 2:21 am in reply to: Anyone have this finding on mri? Circumaortic left renal vein? #2388
Hi DR. Diane, I would be happy to share my mri’s before and after my surgey. My most resent ones were a brain, cine brain, neck and cerical upright all without contrast, as i reacted to it during a spine mri in aug 2011. I have contrast mri 3-11=11 and aug-11 full spine mri. which ones would you be most interested in veiwing? Gladly post them for you. I am heading to see a DR in NC on Thus-14th to be evaluated for csf leak. I have tarvlo cysts in spine which may be leaking. So confused about which road to travel with all this. Let me know which mri’s you want to see and i’ll gladly post them.. Thanks you so much for all the research you’re continuing to do and you’re heartfelt dedication. Big Hugs:) I’ll be in touch as soon as i can:) Thank You DR. Diane For Caring!June 4, 2012 at 12:46 am in reply to: Anyone have this finding on mri? Circumaortic left renal vein? #2334
Hi DR. Diane, thank you for replying to my post. Wow, I was so floored when i read you’re post, and you’re ref to nutcracker syndrome. I have been sick for so many yrs, to many dx to count. Married to a family practice DR, who has tried his best to help me through this journey. One of the DX’s that i gave myself, a couple of yrs ago, was NCS syndrome. I consulted with a vascular surgeon, who was very impressed with my explanation and knowledge of the syndrome, and why i thought i might have it. He didn’t appear to know much about it, but agreed to order a CT to rule it out. Test came back normal, so i canceled follow up appt and let it go at that, as i thought he would look at the radiologist’s report and boot me out of his office. I just found it interesting, as i do with many of you’re findings, that you mentioned NCS. I’ve had many DX’s over the yrs; Chiari-surgery-2002, csf leak, lyme, autonomic, narcolepsey, mastioditis- surgery-1992, and more. I’m sure you get the picture, a patient desperate to be well and thinking “I should be earning a medical degree with all i have researched and learned about medicine throughout the yrs”. That being said, I have to say, that i truly believe that the information that you have provided has made the most sense, regarding my symptoms. I’ve read you’re most resent book with great interest. I’ve had pain in the juglar veins in my neck for yrs, which know DR has tested or even mention could be contributing to my failing health. I want to try you’re protocol, but am reluctant, cuz my hubby thinks i have a csf leak, as per readings from an ICP monitor, which was mostly in negative numbers during the duration of 5 days and thinks diamox might make symptoms worse. I know you’re very busy, but when you have time, i would love to hear you’re thoughts on negative ICP readings, and if you think that would R/O hydro and CCVIS? Also, have you encountered any patients who have been treated for NCS with success? I really am hopeful that, what has helped you may help me as well. I’ve watched you’re video’s, and feel a connection to you and what you have been through. I hope you are continuing to feel well everyday. Thank You so much for caring and sharing you’re journey. I have found renewed hope since finding you’re site, Thank you so much:) Big Hugs,letgetwell.