Where to start?

Hi All--

I think I'm starting to get the hang of this. To those who directed me to go to discussion...thanks. I am grateful for finding this forum and did not even know it existed until this afternoon. I was feeling kind of hopeless. My Neurosurgeon wants me to get evaluated for Eagle's Syndrome but...he had no doctor recommendation. So, far, the doctors I've seen either say that they don't know, or my case sure is interesting but, they don't know what (if anything) can be done, or even, Eagle's Syndrome is not a true medical condition. Yikes. It's difficult on the patient to know what to do. I am already dealing with Ehler's Danlos Syndrome (EDS)-- a painful and rare connective tissue disorder). EDS effects my joints and they easily dislocate. I've had a lot of jaw reconstruction surgeries. So, now the possibility of Eagle's Syndrome. I am willing to travel to see the best of the best to have Eagle's Syndrome ruled out or confirmed. I live in North Carolina (south-eastern United States).

Hi Jobina,

Emma on this sight has put together a doctors spreadsheet of doctors if you look at her posts you will find the link. What you need is a 3D Ct scan with contrast any doctor should be able to measure your styloid or see the calcification of the ligament from there you can try contacting the doctors and sending them your CT scan make sure to take a copy with you! The closest doctor to you would probably be Dr. Cognetti in PA. My doctor was Dr. Timothy Anderson at Lahey Clinic Burlington Ma. Good luck! Hope this helps.

Jobina, if you are going to see Cognetti in Philly, he is already aware of "connective tissue disorders" via my case, I have Lyme/Lupus/Sjogren's/Fibrosis from MRI contrast n bowel,skin and carotids, and recently diagnosed as "fibromuscluar dysplasia" PLUS a genetic disease of Dupuytren's.

Pleaes note there are some test that can me done without contrast please speak to your doctors about being checked for FMD I Cant stress this enough, it may be more than JUST elongated styloids (mine were slightly elongated and calcified and I had thyroid cancer he operated BTOH at same time (read all my posts) Cat

Catherine Nichols Pogorzelski anyone needing ateriography read this: here is the info I researched: you may be able to get in thru this link but to garner any articles, enlist as a "med-student" I should be getting my degree any day now...; > ) Semin Intervent Radiol. Mar 2008; 25(1): 65–70. doi: 10.1055/s-2008-1052308 PMCID: PMC3036398 New Tools and Techniques in Interventional Radiology

Guest Editor Martin G. Radvany M.D.
Carbon Dioxide Angiography

Brian Funaki, M.D.1
Author information ► Copyright and License information ►
This article has been cited by other articles in PMC.
The algorithm for patients with renal insufficiency who require vascular imaging has recently changed in my hospital. Previously, the majority of these patients underwent magnetic resonance angiography (MRA) or occasionally computed tomographic angiography after prescan hydration and sodium bicarbonate infusion. Although we have used carbon dioxide (CO2) for many years, with the advent of nephrogenic systemic sclerosis and its unclear relationship to MRA contrast agents, we are increasingly using CO2 as a contrast agent for both diagnosis and to guide therapy. CO2 has been used for > 30 years. It is not nephrotoxic or hepatotoxic and is nonallergenic. It is also quite inexpensive compared with other contrast agents.

Go to:
PROCEDURE more at site: Some docs do not know about doing imaging this “old fashioned way” but for those with Kidney Dis its safest! Cat


http://www.change.org/p/nih-keep-hope-alive-and-restore-lifesaving-study here they are ending this study WHY? Perhaps, like me, they are finding out in medical research circles, that the IMAGING is causing some of the problems initially diagnosed to escalate in severity. IMO a drug should NTO be on the market when tis virtually affecting thousands if not millions of us, only a few of us put it together! so far, we have to hold those accountable.