Germany FAQ

Q: How did you hear about Professor Scholbach and Professor Sandmann?

A: I heard about both the diagnostic doctor, Professor Scholbach, and the surgeon, Professor Sandmann, through the Facebook vascular compression groups (I actually had been off Facebook for 5 years, but there was just not much information online about EDS so I created a profile to see if I could learn more from a support group). I read about pelvic congestion syndrome in one of the EDS threads and it spurred me asking my physical therapist more about it. Then after my cardiologist said he suspected not just PCS, but multiple vascular compressions, he ordered a doppler ultrasound that finally showed abnormal velocities for the renal vein, superior mesenteric artery, and celiac artery. That's when I looked for the compression groups and soaking up any bit of information in them. Unfortunately the whole next year even with the ultrasound results and names from the groups of top specialists, I would be unable to find a doctor help me with those compressions. This brought me back to thinking about the German doctors.

Q: Did you do online consult or just fly to Germany to do the ultrasound?

A: When my health continued deteriorating and I began having kidney stones and vomiting, we knew we could no longer wait around and finally paid to do the online consult where I sent a previous CTA. At the time I was considering just getting nephrectomy done because I was so desperate for pain relief. It was also during COVID so I didn't actually think at this point I would ever fly to Germany, we just hoped for a diagnosis finally and some direction. When he found things on my imaging no other doctors previously did, that's when I decided to mention it to my EDS doctor and get her opinion on what I should do. She was actually the one to suggest that I had to go to Germany and even wanted to go along so we could bring back the knowledge to our doctors in the states (because of having to get a medical travel waiver and everything happening so quickly she wasn't able to come with me, but I kept in touch the whole time). The ultrasound in Germany was worth it because Professor Scholbach would end up finding way more than what was just on the CTA.

Q: What made you decide to go to Germany or consider having surgery there?

A: Honestly it was hearing Professor Scholbach's answers to all my questions during the consult. He actually wanted to know what was causing the compressions and how to prevent them. No other doctor I had previously talked to was that way. Plus, for him and Professor Sandmann it wasn't about jumping immediately to last case scenario and cutting things, but preserving the integrity of the veins and arteries. Understanding my EDS, I knew this was my best chance. Not to mention Professor Scholbach actually had experience with transplants and kidneys before he was doing what he does now.

Q: How can I contact Professor Scholbach or Professor Sandmann?

A: Professor Scholbach has an excellent website that allows you to request an online consult or schedule an appointment in person. You are quite fortunate that Professor Sandmann has started doing online consults as well, which is a huge blessing to so many to have his expertise. If you'd like his contact information or considering surgery, you can join this group on Facebook.

Q: Do they speak English? Did the nurses speak English?

A: Yes! I was thoroughly surprised and impressed with how well Professor Scholbach and Professor Sandmann speak English. Do not assume everyone speaks English though. A polite way to check is to say "hallo, spreche si Englisch?" and I think the nurses really appreciated this and shows a bit of kindness. If you fly to Germany for surgery I would definitely recommend this (paid link) just to be safe. I actually left mine with other patients because it was useful.

Q: Do you have EDS, Scholbach or Sandmann mentioned they think I cold have it. What is it and how do I get diagnosed?

A: I do, I actually knew about my Ehlers-Danlos Syndrome before I found out about compressions. Please look at this post and this post for helpful information. I would also recommend making sure you are positive you know if you have it before ever deciding on surgery. EDS affects everyone differently and there were a lot of things I had no idea were symptoms or something to ever mention to a doctor. Why it's so important to know I talk about here.

 

Q: What did you ask Scholbach during your consult?

A: I created a list of questions after reviewing my very detailed report he sent me. He lets you really lead the consult so you can go over his findings and the imaging or ask any other questions about compressions. Mainly I asked him about why they were happening, if my symptoms could be linked, and what he thought about different treatments and surgery, and what he would recommend. What I love about both these doctors is they never make you feel bad for asking anything and when you ask them something they will back up an answer with multiple journals/studies in different languages and countries. It's incredible. And when you communicate with them or do finally talk to them face to face, you will see first hand how they really care about their patients and why they do what they do.

Q: How much was your consult?

A: To be honest we couldn't afford the online consult for a year when I heard it was over $1000 and I understand it can be a large amount for some, but please understand what this doctor provides is so much more than any other doctors I have ever been to. The time and energy he expends to help his patients I think is greatly underknown and underappreciated. Please contact Professor Scholbach to ask about price because depending what you want to send for him to look at and how much communication is needed, it will all affect the price. Same thing with the consult in Germany, please contact him to ask before scheduling. Besides the ultrasound, consult, & report, we had 2 COVID tests, and a MRSA test I needed for surgery with Professor Sandmann so that made a difference in my price.

If you believe you have SMAS (Superior Mesenteric Artery Syndrome) or already have a diagnosis, you can apply for a grant from the SMAS organization. I did and received it to help go towards my in person appointment/ultrasound.

Q: How much was your surgery?

A: Everyone's surgery will cost a different amount depending on what kind of room you get, what all is fixed during surgery, and your length of stay. I know Professor Sandmann actually should charge more than he does and tries to keep it as low as possible to be accessible to his patients that come from all over the world. How do you put a price on a life? I know baby deliveries that cost more here in the US than his surgery and they do not provide the care or the food (or the accommodations) that a private clinic would. Please keep in mind exchange rate can impact the price as well. You can contact Professor Sandmann or Clinic Bel Etage if you'd like an estimate on what compressions would need to be addressed during surgery.

Q: What did you have done?

A: Here's the post of our plan before surgery and the post of what they actually found and fixed when they operated. I have two external grafts, one placed around my renal vein and one around my iliac vein because even with my internal iliac stent I still only had 50 % blood flow. Honestly with my history I usually never have things go smoothly and typically have something weird happen. You better believe this is why I chose Professor Sandmann. I wanted the best chance if he opened me up and found something unexpected, that he'd be able to handle it because he's had so much experience thinking on his feet and how the whole body is connected and affected. Meaning he takes extra caution when dealing with the tissue and organs and isn't just tunneled into one section.

Q: How did you decide where to stay?

A: My uncle who is from Germany actually ended up picking and we were so impressed with both places - Hotel Rosenkranz in Markranstädt (right outside Leipzig to see Professor Scholbach) and Auszeit Hotel in downtown Dusseldorf (to see Professor Sandmann). He drove because he knew I could not take the train with the condition I was in. Please be aware that Professor Sandman and Professor Scholbach are in different places and not close if you plan to see both in one trip. A lot of people actually end up flying to Dusseldorf. If you'd like more ideas on transportation and accommodation, Professor's Scholbach's Facebook Page is a great resource. In Dusseldorf, I was surprised how Clinic Bel Etage was so convenient because it was in the center of the city. Everything in walking distance and close to public transportation. They do have an underground parking garage for a daily fee if you end up doing a rental car like we did.

Q: When did you leave and the timeline of ultrasound and then surgery?

A: Check out both these posts (First Week & Recovery) where I include more details, but I was in Germany for almost a month before traveling back to the US. I think if you are able to make it so you can change your return date at anytime this would be a good idea just to play it safe in case you needed more time to recover.

Q: What did you bring to Germany?

 A: I actually created this specific post to help with that :)

Q: What symptoms did you have?

A: I wouldn't learn until after my surgery just how many symptoms were all from my compressions. Even at 3 months post op I'm still noticing things that have improved.

This is my friend Emma who's story originally made me first think about Germany because ours was so similar with symptoms and health issues (here's her news story I've previously shared). I'm so grateful we connected before I went and can now call her a close friend. She's an amazing advocate and has done a fabulous job of sharing the details of her diagnosis, surgery, and just answering compression questions to help others so take a listen below if you'd like to know more:

Q: Should I consider surgery?

A: Something I was thankful Emma warned me about is that the only time you should ever consider this surgery is if your life is severely impacted by the compressions. She was very honest that the recovery although completely worth it, is very difficult (that first week especially) because it's a MAJOR surgery. If you are able to control pain and not debilitated by it, eat and drink without pain, you may not notice a difference after the surgery enough to warrant this decision. I would definitely still encourage you to get either professors to look over imaging so you know what you are dealing with on how extreme the compressions are and if they are impacting any organs. It's smart to of course try things like physical therapy to rule out pelvic floor dysfunction or body alignment and see if working with a dietician or Nutritional Therapy Practitioner can make a difference. I know for most of us though we've tried everything possible out there (yes, including yoga) to cure our issues without luck. All of these things will also make a difference in your healing and keeping inflammation down during recovery so they are not wasted, but sometimes you just need SURGERY.

Q: My symptoms aren't severe all the time, does that mean it's not bad or that I don't need to get the compressions fixed?

 

A: That's how mine started and seems to be the consensus in the Facebook groups. I think this is why it can really mess with your mind and understanding something is really wrong because you may have some good days too. I will even admit when I'd be in a "flare" I'd call them where I'd trying to be deciding if I should go to the Emergency Room, I'd beg my husband to never let me forget how much pain I was in (not that it makes any sense, but I have a feeling if you have this you know exactly what I mean and have done it too). Unfortunately those "flares" would be fewer and farther between until it was like one big flare that I never got out of. For me my severe symptoms started at 12 when I started my period, but it was only debilitating during that time of the month and when I exercised (I was a competitive swimmer). Unfortunately there's the perspective that it's just normal for some people to have painful menstruation so no doctors were concerned or willing to investigate. I also got the typical IBS diagnosis to go with with my digestive issues and abdominal pain. You can read the rest of my story here, but all of that to say is why it's important to get Professor Scholbach or Professor Sandmann to have a look at imaging or do their own ultrasound and CTA.

Q: Are you completely healed?

 

A: I am still very early in my recovery because most friends before me didn't fully see complete healing until 6 months to a year (when their scar turned white). There are so many factors that can affect the success of the surgery and "being fixed." I think it firstly depends if you have a connective tissue disorder, if you've had previous surgeries and which ones, and how long it took before you had the compressions corrected because that can lead to irreversible damage in itself. That's why I'm horrified medical practitioners don't see a problem until a patient is severely underweight and now too weak to safely have a surgery or organs have stopped functioning. I have EDS so I will continue to have other health issues pop up from years of not having my diagnosis, but I would say my quality of life went from 0 % to 70 %. The biggest thing is pain doesn't control me anymore or my life. It's not what I think about all day or trying to find a way to power through.

 

Q: There's no way I could fly to Germany or afford that, what would you recommend to do where I live?

 

A: I understand everyone's situation may be different and will always support you no matter what you decide. You have to do what is best for you and even if you go with a different surgeon, that will not change anything. I ask you to read this before deciding on any treatment because I feel like knowledge is our best tool. Don't let a doctor ever bully you into something you don't feel comfortable doing, there is no problem asking to wait and think on something. It's your body, trust your gut. I see time and time again a doctor promising something and then after a surgery the doctor will no longer see you because there's nothing more they can do. That's why I feel like the support groups help a lot with this on knowing what surgeons are great about post op care or with further complications. Again don't be intimidated to ask them the hard questions because you'd rather do it then instead of asking them after you've had a problem. Unfortunately because these compressions are rare, we are right now on the forefront of paving the way for the best treatment. There are still unknowns, but for me I wanted a surgeon who continues to adapt what is most successful for their patients and admits when things should be changed or improved. 

Are there any other questions that you would like addressed or added? Don't forget to read the Germany section here as well. Please know you are always free to reach out if you would like to know more.