Dear Ruth:
Welcome to this SCLS virtual community, and I am terribly sorry to hear about all the problems you've had with your legs and feet in the wake of an episode of SCLS that led to compartment syndrome.
In case your misery loves company, I should tell you that in my first episode in November 2005, the muscles and nerves in my arms were damaged, such that I am weak and my hands have trouble grasping and doing fine manipulation (like buttoning buttons and tying shoelaces).
In addition, the muscles and nerves in my lower legs were completely destroyed, such that I have no feelings or movement below both of my knees. Luckily, my lower-leg and foot circulation are good and my feet fused naturally with my legs at a 90-degree angle, such that I can walk quite well without a foot drop problem with the help of compression stockings and braces that go from below my feet to below my knees (see http://www.trulife.com/product.html?product_id=729) to give me flexibility and a natural gait. I also use a cane, because I cannot balance and stand still without leaning on something.
To get to this stage, and including my second life- and limb-threatening episode (April 2007), I have had to survive more than 20 operations requiring general anesthesia, including fasciotomies, muscle debridements, skin transplants and other procedures.
And yet, I find comfort in the realization that I could have had a much worse outcome, including limb amputation or death. As a matter of fact, I just heard that another SCLS patient here in the United States has had a leg amputated, so I thank my family, doctors and God for the relatively good quality of life I enjoy.
Please let us know if you are having and how your are coping with other episodes of SCLS, and what medications and procedures seem to be working for you.