My cousin has been hospitalized for about 5 weeks and diagnosed with this rare disease. They cut the sides of both his legs to relieve the swelling. He now has an infection in one of them and Dr.'s say they need to amputant his leg before the infections spreads. My question, is this a common procedure to make cuts to relive the pressure and swelling and have others had limbs amputated? Thanks

Welcome to this SCLS virtual community, even though you are joining in very unhappy circumstances. As you will read under Disorder Details, "When too much fluid is administered [during the resuscitation phase of a capillary leak], the result is excessive swelling, and the patient may well require surgical decompression of the limbs. In this procedure, known as a fasciotomy, the skin of the arms and/or legs is incised to release the compressive pressure the retained fluid is having on blood flow to and from the extremities." I have undergone this procedure 3 times, and after the first time, the orthopedic doctors also wanted to amputate my legs, which were seriously impacted. However, my wife got a second opinion from a senior vascular surgeon who advised against amputation, and so she refused to give her consent. There followed a number of operations (by a surgeon who was not involved initially) to remove the necrotic (dead) tissue that was posing the risk of serious internal infection, and the end result is that today I still have my legs and walk pretty normally, even though I did have partial loss of muscles and nerves. The moral of this story is that your family should urgently get second and third opinions, from vascular and orthopedic surgeons, on the real need for an amputation, because there are many ways to fight infection (which, incidentally, could be the hospital's fault unless it is from necrotic tissue). An amputation cannot be reversed, so it should be an absolutely last resort.

Hello. I'm sorry to hear that your cousin has received this diagnosis and is so critically ill. You are in my thoughts. My husband has just been released from the hospital, after spending 5.5 months recovering from his first (and very severe) episode of this illness. My husband also had to have cuts while in ICU to relieve swelling and pressure (capillary leak and too much fluid administered in ICU caused Compartment Syndrome in my husband's arms and legs). Fortunately though, the surgeons (who performed a surgery on him called a Fasciotomy) were able to save my husband's limbs and no amputations were required. He is now relearning how to walk. I'm not a doctor, so I can't tell you how common the procedures are, but your story will likely seem quite familiar to many of us. My best to you, your cousin, and your family. Don't lose hope.

Hi I too had fasciotomies to both of my legs and both of my arms and I had ongoing infections that the hospital got on top of ... we had numerous debriding sessions of necrotic tissue along with months of "wet and dry" dressings to continually remove necrotic tissue. As well I had foot drop and could not walk for 2 years and then underwent a series of orthopedic operations to reconstruct my feet and after 2.5 years I could walk again and lead a full and "able" life. Read Ruth Nolan's path under the discussion forum for more details. I would agree with Arturo and get a second opinion ... the right surgeon/specialist can work miracles! Cheers Ruth

How do i get information on recovery

I don't know what you mean (recovery from what?), and please give us an update on your cousin, and whether the advice you got was of any use.