Doctors in Mclean, VA

If you used DMSO in the past but your doctor won't do it, then it’s time to move on. There are SO many different cocktail combinations that can be tried you should ask your doctor about trying a different one. It took me about 4-5 different cocktails before we hit the right one that works for me. If a different cocktail doesn’t work, you may need a referral to a Qualified Pain Management doctor. I’ll post some links from the ICA website on the different instillation cocktails that you could consider. I couldn't manage without my instillations. My doctor won't do DMSO anymore either (he considers it barbaric!) and has found other cocktails give his patients better results, so don't be afraid to talk to your doctor about a different cocktail. http://www.ichelp.org/page.aspx?pid=938 http://www.ichelp.org/document.doc?id=208 http://www.ichelp.org/page.aspx?pid=937 http://www.ichelp.org/document.doc?id=20 http://www.ichelp.org/page.aspx?pid=940 http://www.ichelp.org/document.doc?id=265

ORTHOPEDIC PROBLEMS IN THE EDS PATIENT, Dr. Edward G McFarland, available from http://bit.ly/HQDNwk 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? There aren't many EDS specialists, even worldwide. Try to for orthopedic surgeons or specialists in: 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/H1sbYR

Ehlers-Danlos Support UK (http://www.ehlers-danlos.org/) or check Orthopedic Services at The Hospital of St John and St Elizabeth, 60 Grove End Road, London NW8 9NH, Outpatient Office: 020 7806 4060 (http://www.orthopaedicunit.org.uk/) - http://www.uclh.nhs.uk/OurServices/Consultants/Pages/ProfRodneyGrahame.aspx

Impingement can certainly ruin your life just as much as dysplasia! I'm so sorry you're going through this. My knowledge of impingement is less thorough, but you still want a couple of opinions from top hip preservation doctors. They will tend to be the same surgeons people see for dysplasia: doctors who have very thorough knowledge of the hip joint. The problem, as I'm sure you've found, is that the world is full of hip surgeons and it's hard to tell who's really an expert. The Yahoo group is full of women from the UK and they have more knowledge than I do about the surgeons there, but a couple of names I hear recommended regularly are Mr. Johan Witt http://www.uclh.nhs.uk/OurServices/Consultants/Pages/MrJohanWitt.aspx and Mr. Marcus Bankes, who's at St. John/St. Elizabeth recommended above by EDNF http://www.orthopaedicunit.org.uk/orthopaedic-surgeons/hip-surgeons . If you decide to come to the US, I recommend Dr. Michael Millis (and his team) at Children's Hospital Boston (Massachusetts, Northeast USA) -- they do see and treat adults! -- as well as Drs. Kelly, Sink, and Buly at the Hospital for Special Surgery in New York City. The first two, HSS and Children's Boston, are a quick flight away from each other and might be easiest if you want more than one opinion. Full disclosure: Dr. Millis did my surgeries and I think he's a genius. I'm not the only one with that opinion, though! HSS in New York is also extraordinary; several relatives and friends have been treated there. If I were to travel so far, I would want to meet only the best, and without going to the middle or west coast of the USA, these are my recommendations. Perhaps some of these doctors would do a long-distance consult with your various films (x-rays, MRIs, etc.)? It's worth asking. Hang in there and don't give up!

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/.

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 You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/.

Pages 4-6 of Dr. Alan G. Pocinki's Joint Hypermobility Handout fvrom the 2011 EDNF National Conference at http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=88889219 Dr. Clair Francomano's presentation, "Ehlers-Danlos Syndrome Update 2011", Slide 11: "Pain in EDS myopathic, neuropathic, single most common cause for referral", as well as slide 39, "Spinal disease causing significant morbidity, back pain, and neurological symptoms is nearly ubiquitous and frequently causes disability." http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=88889219 Antioxidant and potential anti-inflammatory activity of extracts and formulations of white tea, rose, and witch hazel on primary human dermal fibroblast cells http://www.journal-inflammation.com/content/8/1/27 -------------- http://en.wikipedia.org/wiki/Low_level_laser_therapy "Low-level laser therapy (LLLT) is a medical and veterinary treatment that uses low-level lasers or light-emitting diodes to alter cellular function. LLLT is controversial in mainstream medicine with ongoing research to determine the ideal location of treatment (specifically whether LLLT is more appropriately used over nerves versus joints), dose, wavelength, timing, pulsing and duration. The effects of LLLT appear to be limited to a specified set of wavelengths of laser, and administering LLLT below the dose range does not appear to be effective. Despite a lack of consensus over its ideal use, specific test and protocols for LLLT suggest it is effective in relieving short-term pain for rheumatoid arthritis, osteoarthritis, acute and chronic neck pain, tendinopathy, and possibly chronic joint disorders. The evidence for LLLT being useful in the treatment of low back pain, dentistry and wound healing is equivocal." Physical Therapy Interventions for Patients With Osteoarthritis of the Knee: An Overview of Systematic Reviews http://www.ncbi.nlm.nih.gov/pubmed/17986496 Efficacy of low-level laser therapy in the management of neck pain: a systematic review and meta-analysis of randomised placebo or active-treatment controlled trials. http://www.ncbi.nlm.nih.gov/pubmed/19913903 A systematic review of low level laser therapy with location-specific doses for pain from chronic joint disorders. http://www.ncbi.nlm.nih.gov/pubmed/12775206

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 You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/.

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 You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/.

http://oreds.org/ EDNF Physicians Directory http://www.ednf.org/ednf-physician-directory?shs_term_node_tid_depth=All&country=us&province=All EDNF Professional Advisory Network http://www.ednf.org/professional-advisory-network You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/.

http://bit.ly/J9 vZ8W EDNF's Pain Management Medical Resource Guide http://www.ednf.org/index.php?option=com_content&task=view&id=2123&Itemid=88889247 "Chronic Pain is a Manifestation of the Ehlers-Danlos Syndrome" (Sacheti et al, 1997) http://www.ednf.org/index.php?option=com_content&task=view&id=1331&Itemid=88889208 Dr. Howard Levy, "A Primer on Pain Medications" available from http://bit.ly/HQDNwk

I wouldn't trust any of these doctors the same way as I trust my specialists, Dr.Tinkle and Dr.Francomano, in the states. These docs in Ontario say that they are "EDS specialists" but really they are just specialists in their field, with an interest in EDS. Don't trust them.

Not 100% sure if Dr. Tarnopolsky knows about that but my daughter is a very severe case and already has issues with her neck at the age of 5. We also are lucky that the entire team we see is all at McMaster. Dr. Burrow her orthopedic dr., plus ENT, neurology, gastro, cardiology and more. Every single dr. Seems to be on top of it all. Actually both my kid's and myself have EDS and are happy with the care we get. Unfortunately I didn't get diagnosed until after my daughter was born but glad I got it and I don't feel so crazy now.

Beth HopkinsYea, they certainly don't even compare to the docs down in the US, but at least it's a start... if enough of us Canadians go to these Canadian doctors with an interest in EDS then, over time, they will become educated and true specialists will emerge... Canada may not have a true specialist yet -but together we can make it happen! EDSO Fundraiser

I agree, Dr. Mark Tarnopolsky at MAC, he has been the best doctor. (McMaster University Medical Centre, Hamilton, ON)

Glad to see someone else likes Dr. Tarnopolsky. He is amazing

thank you for the list Christie - I'm seeing three on the list already. Yet to start the wasser clinic. Perhaps Dr.Lui (gastro) will treat me better now that I have been dx with Eds. The geneticist is kind and thorough, but didn't give too much information. going for a second opinion & info.

@Pam Carlson. Yes you will need a referral to see Dr. Tarnopolsky. Typical wait is about 5-6 months depending on other cases he is caring for.

Be sure you consider surgery carefully; soft tissue surgery is often a failure in EDS because of the collagen defect, so things like tendon-tightening aren't necessarily a good idea, but bone surgery is usually fine, so hip replacements usually work…for more where that came from, see Dr. Edward G. McFarland, "Orthopedic Problems in the EDS Patient" http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=88889219 [Mark]

Pam, I think you would need a referral to see Dr. Tarnopolsky. EDS is not really his area, but he understands it.

and other places https://www.edsers.com/Doctor_Database.html

Find contact info for Cary Johnson in Calgary. He is a very well connected genetic specialist that concentrates on connective tissue conditions.

Dr. Mark Tarnopolsky at McMaster Hospital in Hamilton, On. He is a neuromuscular specialist and is amazing. It isn't his specialty but he knows everything possible about the condition!!!!

Dr. Donna Gilchrist Geneticist out of University of Alberta Hospital

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 If you're willing to go to northern CA, see the post just below yours from Scott Morrow; it includes some information on doctors in N. CA. [EDSerMark]

I just saw Dr. Lin at the Pain Center at Cedars Sinai. I got a same wk appt & for the first time a doctor believed my pain & gave me the meds & treatment I needed. Not only did he squeeze me in for a spinal injection because he knew we didn't live in LA & were going home a few days later but he told me he'd be happy to refill any non-narcotic med over the phone or sched my next procedure or test without my having to make the 6 hr drive for a follow up. My husband really liked him too.

Thank you for the wonderful recommendation Teresa! I will check Dr. Lin out. Did the spinal injection help you?