@lilwider And there’s also the following website that provides additional resources when dealing with insurance company denials.
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I’ve attached the results from my venography. The imaging was done on August 4, but the medical center where I had it done had to be asked twice to forward the images to Dr. Costantino. Then I realized that the medical center didn’t complete the 3D reconstructions that Dr. Costantino clearly requested when he ordered the imaging. So, now we’re waiting on the 3D lab for that. sigh
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What a great self-advocate you are, @CoHDa! Thank you so much for sharing what you’ve learned. I’m sure it will benefit a number of our members over time. I really appreciate having the information for myself, as well.
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Wow! Thank you for the wealth of information!
I am hoping that you are able to get an approval as well.
It really is horrible that there is no empathy and common sense on the insurance company’s end. Realistically if they insurance company had to have a very involved surgery would they want arun of the mill inexperienced dr operating on them.
Hoping and wishing for good outcomes for all of us!
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I’m so glad for you that Dr C ordered that imagining and found these issues! The imaging you had was in movement? Dr Lo only had supine MRI still Done. I have been under the impression that upright in movement is the gold standard. Your findings and experience gives me hope working with Dr C.
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Well done & good luck with the appeal! 
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@Isaiah_40_31 There are some people who make things happen, some who watch things happen, and others who don’t know anything happened. I like to think of myself as one of the people who makes things happen…or at least tries. I know I’m not the only one here on this forum who does.
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@lilwider The images Dr. C ordered were done using CT rather than MR imaging. The CT was static, meaning I was lying down with my head in one position. Given the results, I am hoping that he will now order the dynamic MRI that he talked about at my initial consultation. That MRI is not static, so I won’t be restricted to lying down and keeping my head in one position while the images are captured. I’m very anxious to see what happens to both my IJV and ICA when I turn my head side to side.
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@Jules Thank you!
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When I had my appointment with Dr Lo had a lying down CT with contrast and he and Dr patsilades felt there was no need to go further on imagining which was a little disappointing since I feel when I move my head everything get worse
, Thinking I have some compression. Hoping Dr.C will have different insight🤞 good luck-Hoping that you have the motion MRI and you get positive results🙏 are you local?
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I had my appointment with Dr.C today and he does suspect vascular based on my symptoms and he is ordering a ctv. It was so reassuring that he listened and was kind and understanding. I felt very comfortable and feel like I’m in good hands. Hoping and praying
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@lilwider I am so glad you saw Dr. Costantino! It’s wonderful (but unsurprising) that you’re feeling reassured. Hopefully, the venogram will confirm what he suspects. I’m sure it will, because if he suspects VES, then that’s likely what’s going on. Keep praying, because your prayers are being answered! And to answer your earlier question, I live on the other side of the state, in the Finger Lakes region, Rochester to be exact. When, God willing, I travel to see Dr. C, perhaps we could convene a patient convention. 
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Hi Friends,
I’m happy to share that I received an email from Kelsey, Dr. Costantino’s NP, who wrote,
“I had Dr. Costantino review the images! You are extremely compressed on the left and he would love to schedule you for an additional telehealth to go over next steps to hopefully alleviate your symptoms!”
Needless to say I immediately got the next telehealth scheduled and will talk next steps with Dr. Costantino on September 21st. She didn’t mention anything about a dynamic MRI, so maybe it’s unnecessary given what can be seen on the CT alone.
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What terrific news, @CoHDa!! I’m so glad for the forward progress that’s been made as it sounds like a surgery date will follow the telehealth consult. VERY EXCiTING!!
It is a blessing to meet other members from our forum. I live in California & have met quite a few over the years. It’s great for those awaiting surgery to be able to talk face to face w/ someone who’s been through it. I hope you & @lilwider get to support each other in person. 
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Thank you for your continued support - I’m keeping hopeful. Now the next battle… Insurance!
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Woohoo! So happy for you! Keeping my fingers crossed for you and thinking good thoughts!
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Fantastic! One step closer )))
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@Isaiah_40_31 Thanks so much! I believe you’re right. I think surgery is next. Hopefully everything will fall into place with insurance, so I won’t have to carry my styloids with me into 2024.
I facilitate a support group at my church for parishioners living with chronic illness. We meet twice a month on Zoom, and I have to say that being able to see one another and have a live chat about what we’re going through is a real gift. I’d love to be able to do the same with the members of this forum, but barring that I’d welcome the opportunity to meet up in-person with any members from the NY area.
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@lilwider Fingers and toes crossed! I’m getting ready to throw the kitchen sink at the health insurance company. A fellow college alum diagnosed with a rare cancer suggested I work with an advocate to help me with the appeal. I was not aware there is such a thing, but she said she requested an advocate through her health insurance and now the advocate handles all the insurance nonsense, so she doesn’t have to.
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Yes, one step closer, @Leah! I think I can finally see light at the end of the tunnel, and it’s not a train!
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