I just had a followup with Dr. Schmitz. They are hoping to have special imaging equipment setup in office by September so he doesnt have to send his patients to Dr. Scholbach in Leipzig. It it wonderful news!
Honestly, I feel Dr. Schmitz is so busy with his research that he is not able to meet all his patients needs. It took 2 appointments until I finally was able to speak to him. Ioanna is also very busy assisting the dr and even taking care of patients. When I called she was taking a patient to hotel.
Of course, the appt went incredibly well and I would not choose another doctor but just something to keep in mind. I think he is super busy! I didnt have any of these issues before my surgery though. It could possibly be just these summer months. He mentioned he is traveling at the end of August. But hes at the hospital at 4am and works until midnight. He would come up to my room to check on me sometimes at 10pm!
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.
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.
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!
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.
It would be nice to look at the CT scans before and after surgery from Dr. Schmitz. If you wish for it yourself, you can send CT (Dicom) images via Google drive to my personal email (filatovtech@gmail.com orfilatovtech@mail.ru ). I also understand that you are currently in a recovery period, and it is not very convenient for you to send CT scans right now. I hope you get better and recover. Maybe send it later. I also want to inform and warn you-to explain : The CT scans contain your personal information, such as last name, first name and date of birth, and you understand that you will share your personal information with me by sending me these CT scans by email. It’s up to you whether to send the CT scan images or not.
