Hello! I have never posted here but I have been part of the Forum for a couple months. I have been looking for a diagnosis since 2018. After lots and lots of doctors, operations, and medications, I finally found help in Germany! After meeting 4 different doctors about the IJV, I chose the Bel Etage Clinic and it has been amazing! Dr. Schmitz and Joanna met with me 3 times via zoom and then scheduled me within 2 weeks for surgery to have both jugular veins decompressed by shaving/resecting the C1. I arrived in Germany and went straight to the clinic. They went over the paperwork and I met with the surgeon and anesthesiologist. Surgery went perfectly. The prep was by far the best I have ever had done. I woke up with lots of nausea which is typical for me. But they were able to fix that problem quickly with a medication that is much more tolerable. It takes me forever to recover from any surgery but the dr and nurses were unbelievable. I stayed for about 3 weeks- they usually have you leave after 10 days. I had lots of trouble with dizziness and was in a wheelchair for the 3 weeks. The nausea was almost constant.
Now for the surgery results. My tinnitus is gone!! Pressure headache, blurred vision, neck pain, and back pain are still present but not constant. I am only 7 weeks post op so the dr is still hoping for relief. I have upper stomach pressure/pain which got worse after the procedure. The dr thinks possibly that the compression in my neck was resolved but I must have a compression in my stomach (I do have EDS) which is now worse owing to the strong flow of blood. I am on a medication for that and it is helping tremendously. We shall see. I am going to wait a few more weeks and then I will meet with the dr to decide on a plan.
Dr. Schmitz is currently researching EDS and especially the compressions that are present with it. If possible, I would love for Dr. Andreas Schmitz to be added to the list of Doctors!! I know everyone has different experiences but after all the doctors I met with he was the best by far!
@nuovo - Thank you so much for sharing your story & Dr. Schmitz name. We’ve had German members who’ve had to travel to the US or Turkey for vES surgery so it’s great to know there’s a surgeon in Germany who deals w/ those things. It’s also great to learn about your experience there & how well you were taken care of & about the positives in your recovery so far.
We have a lot of info on our forum that’s been provided by members w/ EDS, especially @Snapple2020. She recently posted a chart that shows the various compressions that can occur in the body, especially among those who have EDS.
Wow what a great success story. I want my tinnitus gone! Boo Hoo, I am jealous. I pretty much have most all the vascular compressions myself and they say, if possible to take the top down approach. I just had my revision ES surgery and neck adhesions removed about 14 weeks ago. Doctor thinks based on my post op US velocities, I have compression at the SCM of IJV on one side. Im attaching an article about that for you. This pain started right after surgery so it makes sense to think once you fix one clog, the downstream clog takes on the pressure. I had a vascular surgeon explain it like a plumbing issue. You can’t just fix one clog when you have multiple and expect it to function properly. You need to take care of all the clogs (or compressions).
Im having issues with pressure on the left side in chest below the neck. I was already DX with nTOS on the other side so I am having scans to look further into that.
As to stomach pressure and pain, there are a few things to look at that are common in EDS. Hiatal hernia? MALS, SMAS and Nutcrackers vascular compressions. Have you checked into MCAS?
It would be very interesting to see your Dicom CT scans before and after the surgery. I’d like to see how Dr. Andreas Shmitz resects C1. Can you share your CT scans in Dicom files? Here or via email filatovtech***gmail***com______
I’m so glad that you had a good experience with your surgery and Dr Schmitz! I think you’re the first of our members who has had surgery with him, we have had his name mentioned in a discussion but don’t like to add a doctor’s name to the list unless a member has seen him…
Great that your tinnitus is gone, and good that you’re realistic about the timeframe for healing, it is still early days! With having bilateral surgery there can be more swelling than with just one side so that could be a factor too.
Thank you so much! I am very glad my experience could be helpful, and I am especially glad to hear that Dr. Schmitz has been added to your doctors list. I hope it makes it a little easier for others in Europe who are looking for treatment options closer to home.
Thank you also for mentioning the information on EDS and the chart from @Snapple2020. I will definitely take a look at it. I am currently researching IVC compression. I really appreciate all the information and experiences that everyone shares on the forum.
Thank you so much for all of this information and for sharing the article! I have actually read and reread it—thank you!! That explanation makes a lot of sense. In my case, I also have compression from my digastric muscle, but that has not been addressed yet.
I honestly have not had much imaging done for the stomach pressure, so I am still trying to figure out where to look next. I do have MCAS. A very close friend of mine has already had SMA and MALS surgery and is now preparing for Nutcracker surgery. Unfortunately, she has developed pretty severe gastroparesis, which has been very difficult.
I have been looking into IVC compression because my pressure and pain are so high up, more in the upper abdomen/chest area. I am definitely interested in learning more about the different vascular compressions and how they can interact with one another.
Thank you for sharing your success story! We personally met Dr. Schmitz recently. He had a conference about most of the surgeries the doctors do there at Clinic Bel Etage. He told us the reason he does not remove the styloids is to try to keep the neck from becoming too unstable with those who especially have hEDS. Also he believes doing the C1 shave on both sides helps build scar tissue for keeping the neck stable. But he was quick to say he has only been doing surgeries for IJV in the last couple years. He knew about our daughter’s recent surgery with Dr. Hepworth and was interested in hearing how he did the surgery and scar tissue removal around the jugular and carotid artery. He is still learning about all these other cormorbidities associated with IJV compression and then he is also digging deep into IVC presently with another patient. After hearing about our daughter’s other symptoms that is keeping her dysfunctional Dr. Schmitz highly suspects IVC. We found on the US report from a year ago that read like this… The IVC has an eye catching compression at the diaghram and between the liver and renal artery area… two compressions. The mesenteric artery lower in the abdomen is not compressing the IVC. So maybe the IVC compression could explain her symptoms of high heart rate and severe blood pooling that has become major since her IJV surgery? She has already had surgery at Clinic Bel Etage for the MALS, Nutcracker and May-Thurner a year ago.
Keep us posted, @nuovo , if you are able!
I had the pleasuring speaking with Dr. Schmitz a second time regarding a potential surgery I may get done this month.
Approach: Dr. Schmitz emphasizes that C1 is the primary source of compression. He will resect C1 first and use CT/X-ray during the surgery to determine whether the styloid is still contributing to compression. If so, he will resect the styloid as well.
Surgery: Both sides can be addressed during the same surgery. You would be positioned face-down with my neck rotated, then repositioned to the opposite side to complete the second side. If a complication occurs on one side, they may wait a few days before operating on the other.
Facial nerve: They emphasize that full or partial facial paralysis is not considered a concern with their approach.
Experience/outcomes: Dr. Schmitz has performed approximately 75 of these surgeries, with about 90% of patients reporting improvement in symptoms.
@BuckeyePrincess - Your poor daughter . I’m sorry she is still looking at future major surgeries, but if they all help a bit, then added together, I hope her recovery becomes complete.
SSS-Syndrom of Jugularis left and right side. 16,000.00 €
All the other fees including hospital stay, nurses, food, 1 companion…..was about 41.667,85 €.
Kindly note that our cost estimates are provided in two separate documents: one for the clinic and one for Dr. Schmitz as the operating surgeon.
The cost estimate includes all expenses related to the treatment, including:
• transfer from the airport or main train station to the clinic and back again,
• the surgical procedure of the jugular vein,
• a 10-day inpatient hospital stay,
• medication,
• laboratory tests,
• a postoperative CT scan for control,
• physiotherapy,
• as well as accommodation and catering for one accompanying person.
If you decide to come without an accompanying person, the corresponding costs will, of course, be reduced accordingly.
Please also note that Dr. Schmitz genuinely wants to help the patient. If the price exceeds your expectations or is too high, please let us know. Dr. Schmitz and I will review the situation together and see what we can do.
. I’m sorry she is still looking at future major surgeries, but if they all help a bit, then added together, I hope her recovery becomes complete.