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Ehlers Danlos Syndrome- Advice

Discussion in 'Biomechanics, Sports and Foot orthoses' started by bigtoe, Dec 14, 2007.

  1. bigtoe

    bigtoe Active Member


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    Hi all,

    I have a female patient (21) with Ehlers Danlos Syndrome.
    She reported over I year ago with consistent dislocation of left 1st toe, I supplied aol's with 1st ray cut outs. The aim was to provide some stability and decease the load near the 1st met area. She now states the toe has only dislocated once in the last 15 months. Her toe has recently dislocated again while I feel the insoles are helping should I be thinking of anything else? i.e.surgery, different type of insole???

    thank you

    Scott
     
  2. g c mann

    g c mann Member

    What grade is the Ehler-Danloss?most of these patients with this collagen binding disorder require limitation of movement,AOL devices are probably not controlling enough of her hyperpronation.Arthroeresis could be a solution if this does not work.
    Grahame
     
  3. Donna

    Donna Active Member

    Hi Scott

    I had an 11 year old patient when I was at uni with Ehlers-Danlos Syndrome Type 3, and he couldn't walk more than 30 minutes without leg pains that would have the poor little fella in tears! :( I remember he had all the classic textbook signs of EDS, including the mega-stretchy skin and multiple bruises!

    He responded really well to functional devices with a medial skive and minimum arch fill... went from being fairly inactive due to pain to being able to participate in more normal exercise and activities... So yeah I agree with Grahame, a generic device is probably not strong enough to control the huge ranges of motion in that patient!

    Well that's my 2 cents...:drinks

    Regards

    Donna :)
     
  4. bigtoe

    bigtoe Active Member

    cheers

    i am fairly happy with outcome (one dislocation in past 15months) i do not feel at the moment surgery would be the best outcome. i will review insole and possibily think about providing more control/ stability with valgus forefoot posting.

    cheers scott
     

  5. Scott:

    I have no clue what an aol is? Does that mean America On Line???;)

    In these patients with Ehlers Danlos Syndrome, you should use more extreme corrective measures within the custom foot orthoses to produce the desired effects on the foot due to the greatly increased ligamentous compliance that these patients exhibit. 4-6 mm medial heel skives, 20 mm heel cups, rearfoot posted, 5 mm or thicker polypropylene shells, balanced 2-6 degrees inverted, with minimal medial expansion plaster thickness on positive casts work well for most. I would use a 2-5 forefoot extension (i.e. reverse Morton's extension) of 3-5 mm korex/EVA on the device to further reduce the ground reaction force on the hallux/1st MPJ which should help prevent dislocations even more.
     
  6. pgcarter

    pgcarter Well-Known Member

    I have some one who has shopped around for help for 25 yrs to no great success. I have tried to talk her into wearing strutted knee braces as well....does any one have anything to say on this?
     
  7. g c mann

    g c mann Member

    Why increase valgus forefoot post? Dr Kirby has given a very comprehensive tx plan with which I entirely concur.These patients must be stabilised mechanically,good luck.
    Grahame
     
  8. bigtoe

    bigtoe Active Member

    Hi G Mann,

    I was thinking the lateral posting would help control the lateral insability and also decrease the pressure placed on the 1st met area.

    Hi Kevin,

    AOL's= off self insoles. I normally don't use them but i like them when using 1st ray cut outs.
    I tend in general not to use casted insoles, at the moment using alot of interpod flex.

    cheers

    scott
     

  9. Scott and Colleagues:

    You must remember that many podiatrists from other countries following along with these threads on Podiatry Arena don't have a clue of what you are talking about when acronyms are used or proprietary insole names are used that aren't available in their respective countries.

    In the future, in order to make your postings more valuable to all of those following along, you should always spell out your acronyms, such as subtalar joint (STJ), and when a proprietary product is being used this should be briefy described, such as AOL (an off the shelf insole that is commonly used in the UK), in order to best facilitate information transfer with this remarkable electronic educational site we call Podiatry Arena.

    Merry Christmas!!:santa::santa::santa:
     
  10. Actually AOL = Australian Orthotic Laboratories (???) don't exist anymore after, legend has it, owner Philip Vasylli sold the trademark for much cash to America On Line. The preforms in question are now called Vasylli or something like that.
     
  11. Donna

    Donna Active Member

    Yep I think there might have been an article on Podiatry Arena about that a little while back, Simon... they're called "Vasyli Custom", "VOL" or "Orthaheel" now... But I still see the odd "AOL" still floating about, patients mostly report that they got them at the physio, and usually they're a few years old and worn out... :rolleyes:

    Regards

    Donna :)
     
  12. admin

    admin Administrator Staff Member

    ...and Mr Vasyli just sold them to Scholls for £33.2 million :D
     
  13. twirly

    twirly Well-Known Member


    I think DTT has another thread going about this transaction.

    On another note may I also thank Kevin Kirby RE: use of acronyms.

    Took my 3 days working out what IMO stood for. :wacko:

    I thought someone had discovered a new device. :rolleyes:

    Much prefer whole words then even I can't get confused.

    :empathy:
     
  14. g c mann

    g c mann Member

    Hi Scott,If you increase lat posting then the forces are moved medially therefore abrogating what you are trying to achieve clinically,You are in fact moving the foot towards lateral impingement,however because of the hypermobility,these patients move their structures to accomodate the posts.As Dr Kirby implied,the focus of tx is to control motion,so as to bring them into "normal" ranges of function.

    Grahame
     
  15. twirly

    twirly Well-Known Member

    30:11:07

    Newsbot: Scholls buys Vasyli.
     
    Last edited: Dec 19, 2007
  16. pgcarter

    pgcarter Well-Known Member

    Do any of you guys know how Ehrler-Danloss is definitively diagnosed?
     
  17. twirly

    twirly Well-Known Member

    Hi pgcarter.

    try google: ehlers danlos ; loads of information (tried to copy/paste for on here but hey the 'respond to word command'' on pc has died :eek:

    Google search for diagnose ehlers danlos

    Lots of relevant information.

    Regards :drinks
     
    Last edited by a moderator: Dec 19, 2007
  18. Dermotfox

    Dermotfox Active Member

  19. heleneaustin

    heleneaustin Active Member

    Well this is all i could find out for you, hope some of the info is useful; Treatment
    Medical therapy relies on managing symptoms and trying to prevent further complications. There is no cure for EDS.

    Braces may be prescribed to stabilize joints, although surgery is sometimes necessary to repair joint damage caused by repeated dislocations. Physical therapy teaches individuals how to strengthen muscles around joints and may help to prevent or limit damage. Elective surgery is discouraged due to the high possibility of complications.

    There are anecdotal reports that large daily doses (0.04–0.14 oz, or 1–4 g) of vitamin C may help decrease bruising and aid in wound healing. Constitutional homeopathic treatment may be helpful in maintaining optimal health in persons with a diagnosis of EDS. Before beginning these types of therapies, an individual with EDS should discuss them with his or her doctor. Therapy that does not require medical consultation involves protecting the skin with sunscreen and avoiding activities that place stress on the joints. Wounds and infections must be treated with care because tissue healing may be poor. Suturing can be difficult, for the skin can be extremely fragile.

    Prognosis
    The outlook for individuals with EDS depends on the type of EDS with which they have been diagnosed. Symptoms vary in severity, even within one sub-type. Some individuals have negligible symptoms, while others are severely restricted in their daily life. Extreme joint instability and scoliosis may limit a person's mobility. Most individuals will have a normal lifespan. However, those with blood vessel involvement, particularly persons with EDS vascular type, have an increased risk of fatal complications.

    Sorry but i think the insole you've provided to increase stability in the 1st mtpjt is as good as its going get.
    Have you tried medial heel posting by a few small degrees to supinate the foot more to relieve pressure and load from the 1st mtpj?
     
    Last edited: Jun 20, 2008
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