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Hello Everyone, On one of my MRI’s there was an incidental finding of a Circumarotic left renal vein. I’m curious to know, if anyone here with EDS has noticed this finding on you’re mri reports. This is a congenital anomaly which consists of an extra renal vein. I’ve always wondered if this could possibly be contributing to my NCS/POTS, or other symptoms. Just brain storming with little brain power today:)
Hello Everyone, On one of my MRI’s there was an incidental finding of a Circumarotic left renal vein. I’m curious to know, if anyone here with EDS has noticed this finding on you’re mri reports. This is a congenital anomaly which consists of an extra renal vein. I’ve always wondered if this could possibly be contributing to my NCS/POTS, or other symptoms. Just brain storming with little brain power today:)
Hi Letsgetwell, I can’t say I’ve seen that specific anomaly, but what I DO see (or hear about regularly are NUMEROUS venous irregularities including most anything with renal veins. Lots of strange collaterals, The Nutcracker Phenomenon, abnormal course of the renal veins, abnormal termination of renal veins, etc. It sounds like you are right in there with most. Yes, my friends, it’s VEINS GONE WILD sometimes in EDS, and when it affects the veins in our brain, head neck and heart, the effects won’t go unnoticed. Please let us know how it goes for you, OK? Big hug, Diana
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.
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…I’ve had many DX’s over the yrs; Chiari-surgery-2002, csf leak, lyme, autonomic, narcolepsey, mastioditis- surgery-1992, and more… 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 have found renewed hope since finding you’re site, Thank you so much:) Big Hugs,letgetwell.
Hi Letsgetwell, OK, my friend, you may be able to help so many others while you help yourself! Please see page 29, second paragraph of the paperback, “Ironically, pressure on (and likely ischemia of) these cranial nerves due to external communicating hydrocephalus, will result in symptoms of a spinal CSF leak, or low intracranial pressure. The possibility of cranial nerve syndrome must be carefully evaluated, or the physician risks exacerbation of the condition.” I have seen SO MANY patients whose neuros insist upon an LP, but if the ICP is highest above the brain, it can make us “cork” (induce a horrible Chiari), and little or no CSF comes out! In one of my videos, I mention that a trial of Diamox, at worse case, would lower your pressure, if it is low, and you’ll need to lie down, drink lots of water, maybe with sea salt and glucose, for about 3 hours. The effects of Diamox don’t last very long, and you replace your CSF rapidly. I’ll bet my left arm (my “good” arm), that you have external communicating hydrocephalus, my friend. CAN YOU HELP US? I am collecting MRI’s (head and neck) before and/or after any surgeries, and looking at MRV’s of the head and neck. Would you be able to come up with those for me? I’ll have a few other questions for you that we can do behind the scenes. Sound good? I’m close to publishing this, and the more images we have, the more it tells the story for us. We need the RAW DATA (not the radiologist’s report), though. Please contact me through my website — you can use “volunteers@Prettyill.com” for now, OK? I have a cracker-jack techno wizard to help with those images (his wife is affected), and we will maintain your anonymity. If you are symptomatic, can you get a head and neck MRV? THAT is how we can put it all together (again, RAW DATA). We would all be so grateful. Nutcracker — I hear about this mainly in the M.S. conventions, because the EDS conventions don’t yet have speakers focusing on veins yet (I’m trying to change that). Our veins are affected everywhere, my friend, and if you do indeed have NCS, treating it is a must. It sounds like it may not be your issue. If I could see your MRI’s and MRV’s, I believe I can figure it out for you. Cool? Please let me know, and please spread the word that I am collecting MRV’s and MRI’s for all of us, surgery or no surgery. I’d be so grateful. Big hug, Diana
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!
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!
Hi Letsgetwell, I’m so sorry for the late response! Yikes! ABSOLUTELY! I would love to see those images! I have a wonderful (genius) volunteer who is helping to coordinate these images. He knows exactly what we are looking for and can walk you through it (or look at the discs). Can you email Jared at “Images@Prettyill.com” and we’ll take a look? I think there is a gold mine in these images! Big hug, Diana
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!
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!
Hi Letsgetwell, YES! we are still collecting images! How long ago did you email Jared (he’s the volunteer at “images”)? Please keep in mind that we are all volunteers here, with ups and downs (don’t we KNOW it!)… How long ago did you email Jared? Did your email go through OK? (You said that you “tried” to email?). Can you give it another try? Please holler back if the email bounces or what-have-you, OK? If not, please bear with us. We are all working around illnesses, hospitalizations, blah, blah, blah… We may be “part time people”, but we refuse to give up! 🙂 Diana
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