Hi All, Just wanted to update the community with a severe attack that I just experienced on Dec 8, 2010. I began to feel weak that morning and decided to go to the emergency room of a hospital close to my home. I was there for 9hrs before my wife was able to get me transferred to the Hospital of the University of Pennsylvania. I arrived via ambulance about 10:30 that evening. That was the last thing that I remembered before I past out.....Cardiac Arrest at this point. I had went into severe shock. After 30mins of CPR, I was revived. At this point I was on a respirator and in a medically induced coma. I began to swell so much that I was unrecognizable. The doctors told my wife that I needed to have emergency faciotomies on my legs. She approved and the surgeons completed them. Then my arms required the same operation. So a week later I finally awake and began to understand where I was and what was going on. My wife began explaining everything that had gone on. Long story short. I was in the hospital from Dec 8, 2010 til Jan 14, 2011. This included acute rehab also...had to learn how to stand and walk again. I am home now and still receiving physical therapy...out patient. I did receive 1 dose of IVIG while in the intensive care unit. The doctors were in touch with Dr., Greipp to help with understanding the SCLS. I am scheduled to get another dose of IVIG this week. I also am scheduled to go to the NIH during the week of Feb 27 for testing with Dr. Druey. I will keep all posted on how I am doing. I am blessed to still be here at this point. I have a doctor who is part of the Univ of Penn medicine who has some experience with SCLS. Glenn

Hello glhutton, I am very sad to hear your severe leak on December. Please could you tell me when you precisely received the first IVIG, how many mg was the dose and how long was the infusion ? You could ask your wife or your doctor who was in touch with Prof Greipp to get this important informations. I hope your reahabilitation will be short and successfull. Claude Pfefferlé - Switzerland

Happy to hear you are ok and are lucky that the doctors figured out your diagnosis. Dr druey at nih and dr greipp of the mayo clinic in rochester as well as this website will help you figure out your treatment and how to manage this syndrome. Hopefully the "train wreck" of an episode that you just survived will not happen again with some preventative measures taken and also you,your family and doctors knowing what to do(and not overdo))if you have another episode. Good luck. It will take a while but you will get better

Happy to hear you are ok and are lucky that the doctors figured out your diagnosis. Dr druey at nih and dr greipp of the mayo clinic in rochester as well as this website will help you figure out your treatment and how to manage this syndrome. Hopefully the "train wreck" of an episode that you just survived will not happen again with some preventative measures taken and also you,your family and doctors knowing what to do(and not overdo))if you have another episode. Good luck. It will take a while but you will get better

Glhutton, I am also under the care of a physician at UPENN-Dr. LaRosa. I just had my semi annual checkup and he said they had another patient with SCLS. Glad that you are doing much better. Who is your physician? You are in excellent hands with UPENN. Glad that you are going to NIH and in contact with Dr. Greipp. I too have following this path of assistance with these fine doctors. Robert

Dear Glenn: I'm terribly sorry to hear that you went through pretty much the same kind of life- and limb-threatening ordeal that several of us have gone through -- and more than once, in my case. You don't mention here or in your profile if you were taking any medications to prevent episodes of SCLS ever since you were properly diagnosed some time ago. Please let us know because I try to keep track of who is taking what. If by chance you were taking the traditional ones (theophylline and terbutaline) and they did not prevent this last episode, then I'm glad that your doctors now got you started on IVIG. Let me know if you or your doctors need any information on IVIG above and beyond what has been posted here under Disorder Details, Disorder Resources, and in the various discussion topics dealing with IVIG. You can write to me at _aporzeca@american.edu_ and I'll send you a "Care package" you can share with them.

Hi Glad things turned out okay as can be. I have side effect from the IVIG but they are worth the 20 or so days I feel like myself in between treatments. Hope you get regular IVIG treatments approved. Rita

Oh, good to know that you too are on IVIG, Rita! Please update your profile to note when/why you went on IVIG and if you had problems with your insurance company covering it. As mentioned, I'm keeping track.

Gee guys, so happy you were in the right place at the right time and received the correct treatment. Please post again about the questions asked and hopefully we can all learn more from you. I hope for good recoveries and no more episodes for all of you Sarah New Zealand

I also am very glad you survived this ordeal. I had the fasciotomy on both legs 3 years ago this past sunday. I had to learn to walk again myself, but now am able to lead a fairly normal life. Dan

Fasciotomies on tops and bottoms of both my legs and also on both arms. After a long recovery, learning to walk again and many operations later to reconstruct my feet I am aqua jogging 7 days a week and walking almost normally again....thanks must go to an amazing surgeon who has help along the way. At this stage I am still taking no medications other than panadol and have remained attack free for over a year. Best of luck with your recovery...it can be done! Ruth Christchurch New Zealand

Hi Glen, Sorry to hear about your attack & glad you are on your way to recovery. I'm on Terb & Theoph & so far, so good. keep us posted & prayers to you & your family ! Dawn

Hi Glen, I am sorry to hear about your most recent attack but so glad to hear that you are o.k. (Dr.Greippe to the rescue! )I was wondering if you were able to identify the "trigger", if any, that caused your most recent attack? Also, do you also suffer from hypertension?.Were you taking any "preventative" medications at the time? Best wishes for a speedy recovery, Sue

And Sue, would you please add in _your_ profile information on the dates of your episodes, when you were diagnosed with SCLS, and on any meds you've taken with what results?

Hi everyone and thanks for the well wishes and encouraging comments. Claude....Based on my medical records, the IVIG was 2gms administered at that time. Not sure how long that took to administer. Robert...My doctor is Ben Soule. He is a member of the same practice as your doctor. He worked at the NIH at one point with Dr. Druey. Thanks for the encouragment. Auturo...I had started taking the Theophylline this past October 2010 as per Dr Greipp after seeing him in Aug 2010. Susan. We do not know what the trigger was at this time. I do not have Hypertension. I will be at the NIH for tests from 2/27 til 3/4. I will let everyone know my experience when I return. Again, thanks to all for the well wishes and keep the faith that we all will continue to survive this issue.

Glen, I hereby extend to you the same offer I have made to everyone else who has let this community (or me directly) know that they are coming to NIH: If by chance you would like to meet in person, I will gladly pay you a visit while you are in residence at the NIH Clinic. I happen to live about 15 minutes away. If interested, write to me at _aporzeca@american.edu_