Hi, thank you for approving me. I am so overwhelmed by this diagnosis, not gonna lie!! I have been suffering for 2.5 years and while I have 100 other chronic health issues and rare things, it’s impossible to know what is actually causing all my pain on my right head/neck/clavicle etc. We thought/think root canals on this right side, and I am supposed to be getting the extracted, but now I’m so worried. I am also recovering from a major emergency abdominal surgery 8 weeks ago and going to back work soon, so to say I am stressed it the biggest understatement with this new news. I was dx through CBCT through my dentist. I also have a lot of vascular issues (abnormal flow in IJV and subclavian vein with compression in subclavian.) And symptoms which obviously really concern me.
My main reason for this post is to ask how to upload my CBCT so that you experienced people here can look at it! I would appreciate that SO much. I also have an MRA neck and chest scheduled for Sunday (without contrast). Not sure how helpful that will be. Also have more DVT neck ultrasound getting scheduled. And need to schedule with an ENT. Live near Cleveland Ohio. But not sure who is here that is also familar with the vascular part. Any help with uploading images would be appreciated!!
I replied to your other post about your images, I rubbish with the tech stuff so not sure if it’ll be helpful: Making Your Own 3D Images from CT Scan- 3D Slicer Tutorial - Living with Eagle
I’m sorry that you’ve not long since had surgery, and have several other health issues, do you have TOS?
Re a doctor experienced with vascular ES; the doctors most members have seen for help are Dr Hepworth in CO (although he gets really booked up, so I’m not sure that he’s taking on new patients right now), Dr Costantino in NY, and Dr Fargen NC.
I think given your complicated health issues it would be best to see someone with more vascular experience?
Hopefully someone with more tech ability than me can advise you about uploading your scan!
Thank you! I looked at that tutorial but I don’t have dicom images, I think that is an issue? I only have the program and no option to export images. It is all foreign to me! lol I am unable to travel unfortunately, but I have an appt. with Dr. Lammare in a month. I am not sure how experienced he is with vascular though and the office wasn’t helpful. If anyone knows if he is, I would love to know!
Dr. Lamarre’s name hasn’t come up on here for awhile but I don’t think he does vascular ES surgeries. That said, he may have gained more experience w/ ES since he was first mentioned here. In case you haven’t seen it, here is the list of doctors for your state. Dr. Old has a good reputation for dealing with more difficult ES cases so it would be worth seeing him for a second opinion even though he’s not close to Cleveland. You can search for posts about any doctor on the list by clicking on the magnifying glass image in the upper right of this page & typing the doctor’s name in the search box that comes up.