Here are some of my imaging pics. Let me know if you need different angles. Hope it helps! The one of the jugular veins was taken a couple years ago when i had a brain stent put in.
I will definitely keep you posted!! I am so sorry your daughter has had to go through all of this. In the end it will only make her stronger! I will keep her in my prayers.
Dr. Schmitz told me yesterday that he has an important procedure/test this Friday to determine the pressure reading in the IVC. I will let you know if I hear anything! I would definitely follow Tilly Rose on Instagram if you are able. She is sending me updates as well and is the patient that is assisting the doctor with all these testing.
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Thank you very much for the information. I am glad that you found a doctor who genuinely wants to help and is willing to do research, think about alternatives and even, it seems, learn about procedures. There was a case of a New Zealand girl with Ehlers-Danlos where the process was very similar., she described a very similar (good) experience and she was very grateful. As I have some symptoms that could be related with this sort of compression (my right IJV is compressed but the symptoms are not very typical), I might well consider Dr. Schmitz, as I am based in Spain and the clinic is the EU, which I think make things easier.
I hope you a fast recovery. Take care!
All the best,
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Yes Tilly Rose has been thru so much and yet is still willing to be a used for this IVC compression research. I am not able to follow her on instagram so if she does not mind you sharing with us about the findings I would love to know!
Thanks for sharing your hope about my daughter as some days I really wonder if she will ever feel more functional. The way ahead looks almost insurmountable with CCI and IVC and who knows what all else may be underlying that we do not know about! Thanks for praying!
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Wasn’t the case for me, I spoke with him 2 times with only 3 days of wait, spent a whole hour with him on a consult. Though I am not sure about how it is in the clinic.
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Hi. You still haven’t shared the CT scans before and after surgery (Dicom files). And how do you feel now? Have the symptoms not returned or is everything okay?
I had surgery 2 weeks ago for May-Thurner and L5 disc replacement. I will be undergoing nutcracker surgery and Wilkie (SMAS) surgery in 2 weeks. My scans showed severe comsressions and I am grateful to Dr. Schmitz for continuing to help me. He is the only doctor who had shown interest in my case and willingness to help. I did get relief from shaving of jugular veins but headaches are still persistent. I believe this is because of Nutcracker- the corollaries that my body uses to bypass the compressed vein go up through my neck causing extra head pressure. Recovery has been awful and dr says I am healing much slower than a normal patient but I have EDS and a few other autoimmune disorders so it will take time.
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@nuovo - You have so much going on & so many surgeries somewhat close together. I’m not surprised your recoveries have been slow & miserable. Once all is done, & you are more fully healed from each surgery, I expect you’ll feel a tremendous amount better. It will take time & patience & being as optimistic as possible even when you’re in pain will also help your recovery.
I hope you have family & friends around you who are helping support you through this very difficult journey. I’ll be praying for your upcoming surgeries to go well. It’s great that Dr. Schmitz is there for you & has been able to do these diverse surgeries to help with your recovery.
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I’m sorry that your recovery is so tough, it’s so hard for those of you with complicated medical issues having to go through multiple surgeries! Another step forward to better health, and glad that you have Dr Schmitz on your case 
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