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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
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.
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.
Post (highlighting by the author of this website) from a patient with Multiple Sclerosis http://www.mscureenigmas.net/ms-blog/archives/10-2014
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
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,
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