Surgeons in Mclean, VA

I"m afraid I can't find much to help you. There are a couple of case histories which follow, but they're not much help. You might try getting in touch with James Black's office at Johns Hopkins; he's a cardiac surgeon, but well-experienced with EDS (Vascular EDS in particular) and his office might be able to help in some way. http://link.springer.com/article/10.1007%2Fs11748-012-0047-x Case Report: Spontaneous hemo-pneumothorax in a patient with Ehlers–Danlos syndrome http://icvts.oxfordjournals.org/content/9/1/130.full.pdf Case report - Pulmonary Haemo-pneumothorax and haemoptysis in a patient with suspected Ehlers–Danlos syndrome

You may be able to find someone through these resources. EDNF Physicians Directory http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=99999999 The next two don't have contact information, but if you see someone you'd like to contact, Google them: EDNF Professional Advisory Network http://www.ednf.org/index.php?option=com_content&task=view&id=21&Itemid=213 Speakers for 2011 EDNF National Conference http://www.ednf.org/index.php?option=com_content&task=view&id=2068&Itemid=88889230, for the 2012 http://bit.ly/H1sbYR, for the 2013 http://bit.ly/Z39hXX ---------- From Maggie Buckley (EDNF member since 1991 and served on the Board of Directors, was a volunteer at the American Pain Foundation as a member of the Pain Community Advisory Council and on the Board of Directors, and currently President, Board of Directors at Women With Pain Coalition DBA The Pain Community), posted in the thread https://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/8-year-old-twin-girls-in-nor-cal-anyone-know-of-doctors-up-here/ at the EDNF Inspire Online Community - Try working your way from these doctors to someone they work with: There are many geneticists, rheumatologists, orthopedists and surgeons who are fully able to diagnose EDS. The majority of these specialists are not likely to serve as a primary care provider. Specialists refer patients back to a primary care provider for ongoing symptom management with an explanation of EDS and without a treatment plan. The Marfans and Connective Tissue clinic at Stanford is a notable example of this pattern. That being said, several of our Northern California members have sent in names of the healthcare providers that they are working with in. Everyone at the St. Francis Sports Medicine Clinic on Botelho Drive in Walnut Creek has been educated about EDS and is very familiar with the myriad of treatment challenges. The clinic provides a multi-modal approach to symptom management. The office staff, technicians, orthopedist, podiatrist, neurologist, physical therapy and dance medicine specialists have all met and/or treated EDSers in addition to participating in multiple in-service training sessions on the topic of Ehlers-Danlos Syndrome. 925-934-3536 is the number to schedule an appointment. Kaiser has many wonderful doctors who are familiar with EDS. Dr. Michael Weiss is in Adult Medicine at Kaiser Walnut Creek, Dr. Steven Silvani (Podiatrist) is also at Kaiser in Walnut Creek. Genetic Counselor, Kristina Keilman is at Kaiser San Francisco. Dr. Robert Wiskocil is in Rheumatology at Kaiser Walnut Creek. In Contra Costa County Dr. Matt Devane and Dr. Andrew Benn are excellent cardiologists who've worked with several EDS affected folks. They have offices in Walnut Creek and San Ramon and are affiliated with John Muir Hospital. ---------

There aren't many EDS-knowledgable neurosurgeons out there at all. Try Fraser Henderson in Baltimore, maybe? It depends probably on exactly what needs doing whether Dr. H w/could do it. His practice information is in the speaker lists for previous EDNF conferences - Speakers for 2011 EDNF National Conference http://issuu.com/markmartino8/docs/speaker_list__old_site__2011 2012 http://issuu.com/markmartino8/docs/speaker_list__old_site__2012 2013 http://issuu.com/markmartino8/docs/speaker_list__old_site_ There aren't *any* surgeons currently in the EDNF Physicians Directory, sadly. You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/ — or search for a local group near you here on Facebook, many of which keep doctor lists.

Interesting. My IT band has been bugging me since my surgery. Anyway, his name is Dr. Mike Yergler in South Bend, Indiana. He is close with Dr. Lavallee who is on the EDNF Board. I had my first surgery in August and the surgeon clearly knew nothing about EDS even though he swore up and down that I was in good hands. I ended up in South Bend in early November after months of agonizing pain.

I too had Dr. Yergler for my labral tear and bursectomy with an IT band window. My surgery was in June. My I T band kept rubbing on the bursa and also not staying where it should. Each time I stood up or my hip dislocated the IT band was in different place. I tried PT and it still did it so Dr. Lavallee reccomended Dr. Yergler and I am very happy with the results. He is a great surgeon and has seen lots of EDS pateints.

Allergies and EDS may be connected through mast cell activation. Essentially mast cells regulate allergic reactions. There are two forms of mast cell disorders: mastocytosis, in which too many or oddly shaped mast cells are produced, and mast cell activation syndrome, which is abnormal reactivity of normal numbers/type of mast cells. Mast cell activation disorder/syndrome is not yet a widely accepted condition, but it's implicated in a wide range of autoimmune and/or inflammatory disease—celiac, irritable bowel, rheumatoid arthritis, and so on. Mast cells also play an important protective role as well, being intimately involved in wound healing and defense against pathogens. Two types of mast cells are recognized, those from connective tissue and a distinct set of mucosal mast cells. http://prettyill.com/resources/articles, particularly "Mast Cells and Stress—A Psychoneuroimmunological Perspective", "Mast Cell Activation Disease a Concise Practical Guide for Diagnostic Workup and Therapeutic Options", "Study of Patients Perceptions of Disability in Mastocytosis", "Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders", "Organic brain disease mastocytosis" http://en.wikipedia.org/wiki/Mast_cell http://www.patient.co.uk/doctor/Mastocytosis-and-Mast-Cell-Disorders.htm http://alwayswellwithin.com/practical-guides/wellness/mast-cell-activation/ http://www.ncbi.nlm.nih.gov/pubmed/16750977 http://www.respiratoryreviews.com/apr01/rr_apr01_mastcells.html http://www.ncbi.nlm.nih.gov/pubmed/9354811 http://hyper.ahajournals.org/content/45/3/385.short http://www.tmsforacure.org/welcome.php http://www.tmsforacure.org/documents/ER_Protocol.pdf http://www.tmsforacure.org/media/gouldn_anesthesia.pdf http://homepage.ntlworld.com/bhandari/Imperial/Atenolol/Side%20Effects.htm ---------- Low potassium may also be related to POTS, BTW.