Orthopedists in Mclean, VA

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 and for the 2012 http://bit.ly/H1 sbYR You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/.

Hello Evy, The EDNF website has not been hacked. Despite numerous requests, Google has not yet removed their erroneous message. Here is a direct link to EDNF's physician directory: http://www.ednf.org/ednf-physician-directory?shs_term_node_tid_depth=All&country=us&province=All or you may want to ask on EDNF's message board which is located on a different site: https://www.inspire.com/groups/ehlers-danlos-national-foundation/

Did you try the group, as opposed to the page? http://www.facebook.com/groups/237616976261855/ There aren't many members, though. There are two doctors listed for Iowa and a couple in Nebraska in the EDNF Physicians Directory (search for IA or NE). This was from the last "Loose Connections", I don't know if they can help directly, but the connections through it might: SUPPORTING FAMILIES IN IOWA WITH EDS THROUGH SOCIAL MEDIA Child Health Specialty Clinics, Iowa’s Title V program for children and youth with special health care needs, has a new grant to provide family support to Iowa families of children with Ehlers-Danlos syndrome and five other genetic conditions through social media. This project arose out of the realization that there is not a statewide long-term support network for families the living with genetic conditions. Furthermore, between Iowa’s sparse population, privacy regulations, and low incidence rates, families often do not naturally meet others with the same condition. Real Time Family Support through Social Media (RTFSSM) uses social media (Facebook, Twitter, and YouTube) to connect Iowa families of children/youth with six genetic disorders: Ehlers-Danlos syndrome, Marfan syndrome, hearing loss, cystic fibrosis, phenylketonuria (PKU), and sickle cell anemia. In addition to building relationships between families with each condition, RTFSSM will provide accurate health information about the conditions in plain language and engage families in advocacy efforts. The final goal is to raise awareness among health care providers of the importance of family support for genetic conditions. A staff member is available to assist users in setting up social media accounts and learning how to use them. Child Health Specialty Clinics is located within the University of Iowa Children’s Hospital, while the Heartland Regional Genetics and Newborn Screening Collaborative is funding the project. To join the Ehlers-Danlos Iowa group or for more information, please contact info@familytofamilyiowa.org.

Forgot to give you the direct link to the directory: http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=99999999

Thanks for promoting our group! And Janelle, thanks for joining. I work at Child Health Specialty Clinics and moderate the group. I have some ideas that we may work for your daughter and can call to discuss them more in depth. Child Health Specialty Clinics has an office in Carroll that often uses telehealth (HIPPA-secure webcams, etc.) to allow families to see an EDS specialist at UIHC while remaining in their community. Dr. Menezes (a neurosurgeon) is the only doctor currently listed in the directory, but we're working on getting others added. Has she been to the CHSC clinic yet? I added you to the group - can you message me your phone number if you'd like to talk in person?

You may be able to find someone close 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 and for the 2012 conference http://www.ednf.org/index.php?option=com_content&task=view&id=2195&Itemid=88889273 You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/. There are not many specialists, although there are far more than there were 20 years ago. For regular treatment, you will be best served by finding a doctor near you whom you can visit often as needed, and who can take charge in case of an emergency. The best you can do for yourself is learn all you can manage about EDS, and find doctors and nurses who are smart enough to realize they don't know anything, humble enough to learn from you, and compassionate enough that they don't burn out. There aren't as many as there should be, but every one that learns from you will be able to help not only yourself but any other EDSers they have as patients. [Mark]

Suggesting you download both the EDS2010 and the Pain MRGs available on the ednf.org website; make a copy for any physician you see. Validation seems sadly only to come from the written word! SueRN

I don't know of any studies, but clearly they would be. Hill-Sachs is associated exclusively with anterior shoulder dislocation, and the hallmark of EDS is joint subluxations and dislocations. There are many EDS patient reports of Hill-Sachs. Steroid injections should not be a long-term solution for EDSers; steroids used often weaken connective tissue by breaking down collagen, and weakened connective tissue is our problem (and in most forms of EDS, it's collagen that is affected by the genetic mutation). The problem you might face with soft tissue surgery like tightening a shoulder is related to our weakened connective tissue. I'm attaching a series of information sources on orthopedic surgery. The upshot is a lot depends on how your EDS has affected your body; if you've had good experiences with surgery and healing, then you probably will continue to. But there are far fewer guarantees when considering your first. ORTHOPEDIC PROBLEMS IN THE EDS PATIENT, Dr. Edward G McFarland, available from http://issuu.com/markmartino8/docs/mcfarland_handout_7-19-11_eds The big issue with EDS (or any patient) is whether surgery is indicated or not 1. Bones heal normally in EDS typically, so bone operative procedures (fractures, joint replacement) generally can do well 2. Soft tissue operations are a trade off: if you tighten the ligaments, the joint will be tight for at least a little while—how long is difficult to predict in most cases General sense among orthopaedic surgeons that should not operate upon patients with EDS---not true but the risks and benefits have to be carefully assessed 1. Bone operations do better 2. Loose joint operations do less well due to stretching out over time---is short term gain worth risking the complications of an operation? Keith Kenter, MD - Shoulder Instability in Patients with EDS http://www.ednf.org/2012-annual-conference http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435946/ Ehlers-Danlos Syndrome in Orthopaedics: Etiology, Diagnosis, and Treatment Implications (particularly "Considerations During Surgery") There's a good bibliography in Howard R. Epps's handout for Orthopaedic Considerations in Ehlers-Danlos and other Hypermobility Syndromes, http://ednf.org/sites/default/files/Epps%20Handout.pdf Surgical Failures: Is It the Surgeon or the Patient? The All too Often Missed Diagnosis of Ehlers-Danlos Syndrome, Sandy Fogel MD, THE AMERICAN SURGEON June 2013, Volume 79 p. 612 Recommendations With the foreknowledge of the diagnosis of EDS, adjustments to the approach to the patient is worthwhile. Based on the author’s experience, plus a review of the literature, several recommendations can be made to improve the outcome of patients with EDS who undergo surgery. These recommendations fall into four categories: management of the colon, hernias, vessels, and skin. They have in common the recommendation to avoid surgery if at all possible.

The problem is several-fold. Soft tissue surgery in EDS, like tightening tendons, is likely to fail, and sooner than later. That doesn't mean it won't help for a while, but tissue that stretched before surgery is still going to stretch after surgery. There are, though, techniques that can help. Unfortunately, none of them is published that I'm aware of. For a bit more, look at Dr. Edward G. McFarland's handout "Orthopedic Problems in the EDS Patient" from the 2012 conference, available from http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=88889219 Will it get better on its own? Probably not likely except over the very long haul; connective tissue tends to tighten up with age, reportedly, but that may never be enough to fix it for you even if you wanted to wait for it. It is generally easier to find someone to admit to having connective tissue disorder experience than to find someone with EDS experience; the problems are pretty similar for all CTDs. But it can take a lot of work, because surgeons don't like to fail and indeed are likely to run away from EDS. It's a matter of finding someone who isn't a surgeon who runs and/or a surgeon who thinks he's God and all his surgeries work. Not always easy. 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 Good luck. Keep us posted. [EDSerMark]

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 Generally, I'm afraid to say, soft tissue surgeries aren't highly recommended, as they're likely to fail in EDS sooner rather than later. For more, see Dr. Edward G. McFarland, Orthopedic Problems in the EDS Patient, available at http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=88889219 Good luck. [EDSerMark]

I was referred to Loyola University Medical Center in Chicago for knee surgery.

I don't. I do have some suggestions where to look: Maryland, DC, and Virginia Ehlers-Danlos Group, https://www.facebook.com/groups/197653097021200/ is a closed group, but they might be able to help. 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. These don't have contact information, but if you see someone you'd like to contact, search for them online: EDNF Professional Advisory Network http://www.ednf.org/professional-advisory-network 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_ 2014 http://www.ednf.org/conference

Yeah, Dr. Nordt with Ortho Virginia (Parahm Henrico Dr.'s Hospital Campus) helps with my Vascular Ehlers Danlos ortho issues. He may refer you to someone in his practice who specializes in hand/wrist, but he knows his way around the syndrome very well. Another great resource that is specific to hand and wrist is Dr. Adelaar at VCU orthopedics. He usually books up and it takes a while to get in. Dr. Nordt is almost always taking new patients and doesn't have as long a wait. Hope that helps some!

Ribs slipping are a part of being hypermobile. It's possible there is fascia tension that is contributing to pulling them out of place; you might consider myofascial release therapy, it might be helpful. Just a warning about some chiropractic manipulation. It can be risky on people with hypermobility, as we're very easily injured by the treatments; our soft tissue was damaged when the joint distorted, becasue the collagen that should have provided strength couldn't keep that tissue from stretching beyond its normal limits, and the stresses of manipulation can add to the injuries. Watch particularly for the neck: "The World Health Organization considers any connective tissue disorder as an absolute contraindication to cervical (neck) manipulation and joint hypermobility as a relative contraindication." Brad Tinkle, Joint Hypermobility Handbook p. 103 (World Health Organization, 2005, Guidelines on basic training and safety in chiropractic, Geneva, http://whqlibdoc.who.int/publications/2006/9241593717_eng.pdf). Tinkle goes on to say, "Manipulation of joints that are dislocated or prone to subluxation is considered an absolute contraindication…Forceful and rapid neck manipulation of someone with EDS-HM should remain a contraindication." From http://journals.lww.com/neurologynow/Fulltext/2011/07050/Hidden_Hercules__Actor_Kevin_Sorbo_reveals_his.15.aspx “Chiropractic manipulation of the neck carries the risk of tearing the vertebral artery that leads to the brain, thereby causing stroke or transient ischemic attack,” Dr. Kirshner says. “Although the risk is low, it does happen, and physicians and patients should be aware of spinal manipulation therapy as a rare but potential risk factor for stroke.” … A 2003 study in the American Academy of Neurology's journal Neurology confirmed the connection between cervical manipulation and stroke. Wade S. Smith, M.D., Ph.D., director of the Neurovascular Service at the University of California at San Francisco and an AAN member, found that patients under age 60 who had strokes from tears in the vertebral artery were six times more likely to have had spinal manipulative therapy in the 30 days prior to their stroke than patients who had strokes from other causes. "… patients and physicians need to realize that a significant increase in neck pain or neurologic symptoms within 30 days following spinal manipulative therapy warrants immediate medical evaluation.”Dr. Smith recommends that …chiropractic practitioners performing spinal manipulative therapy should warn patients of the risk of tearing the vertebral artery.“I encourage patients to discuss with their chiropractor the types of spinal manipulations that are practiced and whether they pose a risk of stroke,” Dr. Smith says. ---------- Many do fine with the activators, but for some, even those are problematic. I used a chiro before I was diagnosed, but found I wasn't getting any better long-term, that my adjustments weren't lasting until I got home, and I suspect they may have adversely affected my spine. [Mark]