Expert: Thomas Sabalaske DO - 7/19/2010

Question
Hello,

Hopefully this won't sound as though I'm asking for a diagnosis but I am a little lost at he moment regarding my foot and don't know where to turn net so hoping you could help shed light on the situation.  Basically I have Ehlers Danlos Syndrome and just over years ago my right foot became severely pronated for no particular reason.  I literally looked down one day and it was twisted.  Both feet have always been slightly pronated but the right foot collapsed overnight.   I live in the UK and the National Health Service had been exceedingly slow in sorting this out so it was only last year I saw an orthopedic surgeon.  I have also seen a rheumatologist, a specialist in EDS and two osteopaths.  Nobody knows what caused it or what to do about it.  The general consensus is I should accept the fact I am going to be disabled for the rest of my life. I have been given orthotics but they are not the correct prescription and the arch support is built up enough for the right foot as my right leg and knee now twists inward.  Before these orthotics however I could hardly put one foot in front of the other the and in my leg (the whole of my lower leg) was so severe.  With the orthotics I can walk again but have difficulty in doing so and my mobility is restricted.  The only person who ever gave me any hope about this was a young osteopath who had only just graduated.  He explained he had seen a 9 year old girl with the same problem and straightened her foot by giving her exercises.  He gave me the same exercises to do but so far I have been unable to do them properly as they have now caused a pain on the inside of my phonated foot which I never had before.  It varies between a burning sensation and a tearing sensation.  I am due to see him again in Thursday but am reluctant to go due to the fact I am afraid anything he advises me to do now will make it worse.  I still don’t have the correct orthotics as I haven’t much money as I am on sick leave and the NH waiting list is months long so he offered me some plus treatment for £70 which s pretty cheap.  However as I say I am really in two minds about going now and just feel very stuck.  I have had several x rays and MRIS but if she did show anything I don’t know what they showed as no one discussed them with me.  Any light shed, as I say, would be very gratefully received as I would love to be able to live a normal lie again.  I am 34 years old by the way.

Many thanks

Answer
Hi Lucy, and thank you for writing.  I'm sorry to hear that you have had such a hard time with your foot and finding some firm answers.  Of course over the computer I can't make any diagnoses, but merely offer some ideas of where to look next.  I would give the young osteopath another chance and tell him/her that the last exercises made things worse.  Sometimes that provides a valuable clue that whatever biomechanical dysfunctions he was thinking about, he should rethink and try a different treatment pathway.  Naturally I'm sure he is looking not only at your foot, but the entire leg, calf, pelvis and above too.  Sometimes you can get problems in the feet that originate in a higher area of soft tissue.  

Another thing I'm thinking about with your situation (I'm assuming Ehler's Danlos type 3?) is prolotherapy.  This involves an injection of a hyper tonic salt or sugar solution that helps to tighten up soft tissues and ligaments.  This may be of benefit to you.  I found one site with some practitioners in England.  

http://www.bimm.org.uk/Prolotherapy-Practitioners.shtml

Ok, I wish you luck and don't quit trying.  I'm sure there is an answer out there, and I hope you find it soon.  Dr. S