As those of you who have been following my case know, I had a left side styloidectomy in early December, with enormous relief from symptoms for about 10 days, after which all my symptoms returned. I had a follow up jugular ultrasound which Dr. Hepworth reviewed and determined that he believes I have an additional IJV constriction in my right transverse sinus (inside my skull). I do also have IJV compression at my right styloid, but Dr. H is concerned there is a worse blockage higher up. Dr. H referred me to Dr. David Case for a catheter venogram in order to determine whether or not there is in fact a constriction in my vein inside my skull.
I just called Dr. Case’s office, and apparently he reviewed the same jugular ultrasound report (as well as my CT and MRI scans, I think), and determined that “no neurosurgical procedure is warranted at this time.” I didn’t get a chance to actually see Dr. Case, his scheduling nurse just relayed that information and told me Dr. Case won’t see me.
With that response, I’m getting nervous that perhaps Dr. Hepworth is viewing my case through his own specialty lens and finding more IJV issues because that is what he is most familiar with, and is perhaps missing something else? Or is Dr. Case just far more conservative than Dr. H? Have any of you had a similar experience with both doctors you can speak to?
At this point, I don’t have many options other than to trust Dr. Hepworth, as no other doctor has been conclusive nor consistent in their diagnosis. Having experienced serious relief immediately after my styloidectomy, and having significant improvement in my symptoms by taking blood thinners, seems to indicate that I’m on the right track investigating IJV issues, but hearing from a neurovascular surgeon who Hepworth refers to that he doesn’t think anything is wrong doesn’t inspire confidence.
I have been seeing a different neurologist who believes I most likely have a CSF leak in addition to “possible IJV compression,” and found cysts all along my spine in a recent MRI. However, from what he himself has said previously, and my research, it seems that if I do in fact have serious IJV compression, then there’s no point in trying to address the CSF leak as any patches would most likely make my symptoms worse and/or fail due to high pressure caused by IJV compression.
Are there any other neurovascular surgeons in Colorado who understand IJV compression that I might be able to get a second opinion on the catheter venogram from? I have left a message with Dr. H’s office asking the same thing, but I don’t expect a real answer from then until my next appointment at the end of this month.
Is there any other kind of doctor I should be seeing to figure out if there’s a different issue going on? Or another ENT doctor familiar with IJV compression that I might be able to consult with? Unfortunately my insurance will not cover ANY out of state visits, so I’m confined to working with Colorado doctors at this point.
Thanks for reading. This forum really is a life saver. It is enormously helpful to be able to get info from all of you while figuring out how to navigate this labyrinth we call a health care system!