Hey all, been reading through some of the posts on this site and it seems to be the place to be!
I have a weird set of facts here but hopeful the knowledge and experience of people on this site can assist! I am working through this for/with my wife.
Basically have been having symptoms for 2 years now and have been going doctor to doctor. For a while we thought it was poor curve and my C1 being out of place, but in meeting with a doctor to correct that, ES was brought up. My doctor ordered a CT Scan as well as an MRV of which both came back with a normal report. My doctor does not think that is the case because you can clearly see the internal jugular vein compressing in the MRV. The CT also looks to show an elongated styloid. Our doctor called the radiologist to press him on the compression and he noted that while it does appear their is compression they are not going to re-issue the report. Nightmare!
So now anytime I reach out to a doctor or speak with someone they ask to see the scans and since the report says normal I usually get blown off. Has anyone had an experience like this? Or further has anyone ever gotten a second opinion on a CT Scan or MRV?
Having talked to my doctor and the significant research I have done I am confident it’s my Styloid, but every doctor wants to blow me off given the reports show as normal.
Any guidance or thoughts would be greatly appreciated!
I’m sorry for your situation. Very frustrating indeed! I can’t believe the radiologist has closed the case & won’t consider amending the report!!
If you haven’t yet seen the doctor on our list from your state, that would be a starting point. If that appointment fails to produce a diagnosis, then scheduling a phone consult & sending a copy of the CT scan to either Dr. Samji (CA & the most experienced ES surgeon on our forum), Dr. Cognetti (PA) or Dr. Hackman (NC) would be the next step.You’re most likely to get a sooner appt from Drs. Samji or Hackman. Most medical insurance companies will pay part or all of the cost of a second opinion appt even if it’s done by phone/video but you should check yours to make sure.
I believe that if you request it, any one of these doctors will look at the CT scan apart from the radiology report & draw their own conclusions. Including a note from your PCP (or whoever ordered the scans), stating that (s)he feels the radiology report is incomplete, will also help your case.
Isaiah’s given you the same advice I’d give, so won’t repeat it, just wanted to say too that I’m sorry that this has happened- beyond frustrating! And especially that they won’t even listen to your own GP. I hope that you can get somewhere with the doctors Isaiah has mentioned.
Let us know how you get on, & good luck!
I would also add Dr. Hepworth in Denver, Colorado to the list of doctors you might consider reaching out to to look at your scans. I am not sure how he operates with out of state patients but he has been extremely helpful to me and willing to think outside of the box. My CT scan radiology report also came back “normal” but he noticed my elongated styloid right away. He is very thorough and does a lot of testing/treatments to see if there are parallel issues along with ES and to rule everything out but he is amazing and very knowledgeable about ES and all of its associates issues.
I agree with all that has been suggested. Some radiologists dont know how to recognize ES or dont believe in it. Your radiologist sounds like a tool.
I sent Dr. Samji my CT Scan on disk and had an answer in 2 weeks. I then scheduled an in person consult 3 weeks later. I could have done a video consult quicker but nurse called me and said yes, doc can help me with ES so I knew I wanted to meet him in person. He charges $300 for consult if your insurance doesn’t cover it.
Id get the CT scan in person if you can ASAP and handle the mailing yourself to whomever you want to review it. Sometimes they can take forever to mail them to doctors from radiology depts.
This is all extremely helpful! Going through the options with my wife. Will keep you all updated. Good to hear people have had somewhat similar experiences. Thx!