Οι ασθενείς μας κατοικούν σε πολλές χώρες :
Many patients exchange their symptoms and treatment results on third-party websites. A detailed patient website refers to the Midline congestion syndrome. Some facebook and independent patient groups have been formed to tackle the specific aspects of each of the compression syndromes: e.g. Wilkie-syndrome
Dear Professor Scholbach,
Our trip back to Amsterdam was very fluent, so we had plenty of time to reflect on your approach which was both warmhearted and very skilful at the same time. It was an impressive consultation. Thank you for the report…..
With kind regards,
Pat. from the Netherlands, January 2018
Dear Professor Scholbach
I just wanted to thank you greatly for your service.
This world is lucky to have a man with your kind human nature and intelligence.
Thank you again.
Patient from U.K., December 2017
Sehr geehrter Herr Professor Scholbach,
vielen, vielen herzlichen Dank für den Termin bei Ihnen, Klärung der Beschwerden (doch nicht nur im Kopf und muss ‘nur mehr Sport machen’ als Therapie) und bereits geschickten, sehr ausführlichen Befund!
Hervorragende Arbeit! Kann es nicht in Worte fassen! Herzlichsten Dank!
Patient from Australia, December 2017
……Many thanks for this and accepting to meet us. We had a fruitful discussion with Prof. Sandmann and agreed to the surgery. I will be back soon.
Patient from Kenya, December 2017
Hi Prof Scholbach!
I’m really well thank you enjoying singing again drawing and work which all feels amazing! So very thankful to you and prof sandmann you’ve truly changed my life for the better! … The doctors here just don’t understand these conditions like you or prof sandmann do, so many people I help are then persuaded not to go abroad which makes me sad as I know they’re not getting the care here or even the proper diagnose. …The problem here with the healthcare system is the general public trust that the doctors know best. I hope you are well I hear so many good things from the people I speak to who do manage to make it out to you! This makes me so happy as they at least have answers! I only wish more physicians could learn from your findings and scanning technique. I hope you have a lovely christmas and so lovely to hear back from you, warmest regards
Patient from England, December 2017
Hi Professor Scholbach,
Thank you so much for taking the time to write that up for me. It means so much to me. It is very obvious that you care deeply about your patients and I am so grateful to be one of them.
Patient from New Jersey, USA, November 2017
Ich danke Ihnen, Herr Professor, für diese “relativ” (für einen Laien) klaren Daten. …Recht vielen Dank für diese Erklärungen. Ein grosses Lob für die ausgezeichnete Übersetzung [der website ins Franzäsische ] ! Ich bin gespannt zu wissen, was mein Nervenarzt Montag darüber sagen wird. Auf jedem Fall werden die kostbaren Websiten sehr nützlich sein.
Ich wünsche Ihnen ein schönes Wochenende
Patient from Paris, France, October 2017
I hope this email finds you well. How was your conference? I am so impressed with your involvement in the community and am excited to meet you. I would like to know what your earliest availability … Professor Sandmann has recommended I see you for imaging before meeting with him for surgery. …
Patientin from USA , October 2017
I can’t thank Prof. Scholbach more highly for diagnosing 5 artery compressions. I was diagnosed with MALS median accurate ligament syndrome, NCS nutcracker syndrome, PCS pelvic congestion syndrome, MTS may thurner syndrome and with a compression under the left femoral vein. All the syndromes and compression went in missed in the UK I’d been poorly for 14 years and each year was getting worse health wise up until the point I could no longer eat or absorb foods was constantly fainting and needed to use a wheel chair. Prof. Scholbach then kindly put me in touch with the best surgeon iv ever met Prof.Sandmann who performed pioneering surgery for my 5 compressions. Without these two professors I don’t think I’d be around for much longer as I was rapidly deteriating toward the end. I know have my life back I can eat drink as much as I like walk! I don’t feel faint and the lists of symptoms fixed goes on and on! Thank you so much.
Emma G. UK, July 2017
Dear Prof. Scholbach,
I would not like to give up at this point – we have invested so much time and money already and we truly value your interpretation and input. Your reputation among those suffering from these compression syndromes in the USA is second to none. The patient stories we have read of those who have consulted with you have given us hope that we might finally be given some direction and recommendations on how to move forward.
N.M., USA, June 2017
A patient of us made it to the news to spread the message of hope after successful diagnostics in our practice and subsequent surgical treatment:
E.G., UK, June 2017
Dear Prof. Scholbach,
Thank you so very much for reading my letter and for replying so fast. I am happy that it was an interesting one for you to read. Thank you also for your thoughts – obviously I am happy!
I am honoured for such a words from such individual as you are. There certainly are not many such doctors as you are…….. I can’t wait and am thrilled to speak to you.
Again thank you so very much for all your help and time, there really is no word to describe how grateful I am.
With my very best regards!
Slovenia, April 2017
Dear Dr. Scholbach,
Thanks a million for your super quick reply. Much appreciated! ……….
However, after referring to your name they agreed to check Wilkie’s syndrome assumption ………… It appears that your name opens many doors here!…….
Thanks again for the advice. Now I know which direction we should move to. In case if the vascular nature of the pain syndrome is confirmed at least indirectly here in Moscow. We will consider going to Germany to continue examination and possibly further treatment in your clinic.
Kind regards, …….
Moscow April 2017
Dear prof Scholbach,
C. is improving since her operation on 15th February. She has been able to weight bear on the right just days after the operation. The legs are still weak but this will just need Physio and time to build the muscles. Yesterday she walked very slowly without any aids and without pain about 10 metres, this is the first time since February 2013. It was wonderful to see. Her feet and lower legs were warm straight after surgery and if she stays laying down they are warm if she moves about they become cold until she has laying down again for many hours usually it takes overnight to come back warm. She has a lot of pain but we hope over the next few weeks this will improve. Another symptom she still has is nausea but we hope this will improve as well with time.
In the uk I showed our top vascular surgeon your results and he told me that 30% of people have May Thurner syndrome and it does effect their legs. He told C. if you have the operation in Germany I will by you a pint if you walk again that’s how confident I am it won’t work or help her symptoms they are conversion not vascular.
Thank you so much for all of your help and advice, we would never of seen this if we hadn’t of found you and your advice to go and see Prof S. who is a very kind, clever gentleman. Between the two of you you’ve given my daughter hope of a life without pain and suffering. I will never be able to thank you both enough.
London, March 2017
On the other hand, the condition described above as Nutcracker syndrome for me was clearly a vascular problem with indisputable pathological clinical symptoms even for somebody not diagnosed with MS: For example, reflux of blood into the gonadal vein and scrotum leads to painful varikozele and can impair fertility. Both of these symptoms had been part of my problems in the recent past without any of the doctors in charge even thinking of Nutcracker. Now, with Dr. Sclafani’s gold-standard diagnosis, I thought that it would be possible to get the Nutcracker stenting done in Germany and take advantage of reimbursement of costs by the medical insurance company and of an unproblematic aftercare close to my home. This was naive and a big mistake, as I had to find out during 2013.
When I asked Dr. Sclafani if he could name someone in Germany who knows about Nutcracker syndrome and who perhaps can help me to find an interventional radiologist for treatment, he recommended to contact Professor Dr. Thomas Scholbach, the author of the study titled “From the nutcracker-phenomenon of the left renal vein to the midline congestion syndrome as a cause of migraine, headache, back and abdominal pain and functional disorders of pelvic organs ” from 2006. (http://www.ncbi.nlm.nih.gov/pubmed/17161550)
For me, getting to know Dr. Scholbach was another stroke of luck. He is a paediatrician and ultrasound specialist. At that time, he was Head of the Clinic for Paediatrics and Adolescent Medicine in a hospital in Chemnitz. I sended him an email describing my case, including the CCSVI background of my treatment in Brooklyn. He immediately answered my mail via telephone and told me that he was very interested in this subject since having read the first Zamboni papers. My bad experiences with doctors in the past concerning CCSVI in mind, I was totally surprised.
Dr. Scholbach explained to me that the idea of pathological effects of CCSVI outflow problems is very plausible to him and seems to fit to his own studies and hypothesis connected to the Nutcracker syndrome (NCS), which he had coined “midline congestion syndrome” in 2006, not knowing about Zamboni’ s study yet.
Interestingly, his approach to this venous cause of several sometimes misdiagnosed symptoms or diseases mistakenly called “idiopathic” comes from the descriptions of symptoms given by ill children and adolescents in his hospital practice. During his medical examinations of the patients with colour doppler ultrasound in the past, he has found more than 1000 cases of left renal vein compression, which is a remarkable basis for a correlation between symptoms described and outflow disturbances caused by NCS.
Before he startet the ultrasound examination of my abdomen and kidney area, he asked me about my symptoms. Besides the other well known typical “MS”- symptoms, I mentioned my long term problems with back pain and this strange and debilitating problem of a balloon-like feeling in my upper abdomen, connected with increasing weakness in my legs when trying to move faster.
I was totally flabbergasted when Dr. Scholbach told me that all these clinical symptoms are common in young Nutcracker patients. Sometimes – that’ s my understandind of his explanation – during childhood and adolescence developmental changes of the venous pathways prevent from pathological and debilitating problems otherwise following a Nutcracker phenomenon found in early years.
Auszug eines posts (Hervorhebungen vom Autor der website) eines Patienten mit Multipler Sklerose unter http://www.mscureenigmas.net/ms-blog/archives/10-2014
Hello Dr. Scholbach!
I was a patient of yours a couple of years ago. I was referred ….for surgery and had it in July 2014. I just wanted to update you and let you know that it was a total success! Since then, I have been able to go to school and get my pre-med certificate. I also finished a master’s degree in business and I’m applying to medical schools next summer. Every day since the surgery, I wake up and feel great! The best news of all is, after 5 years of infertility problems, I am currently pregnant. I know the surgery isn’t intended to treat infertility, but I think MALS could have been a big contributor for why we were having so much trouble in the beginning. We chose to wait a year after the surgery to start trying again and it happened after just one year of trying.
I had a complete resolution of epigastric pain, acid reflux, extreme fatigue, anxiety, and most of my other symptoms within 6 months of surgery. I am very thankful that …. I am able to live my life better than ever thanks to your diagnosis and treatment.
I just wanted to update you after all this time and thank you for all the research you have done on this condition.