I have been dealing with SCLS for about 2-years and also with a back problem. I have serious pain and am loosing the use of my right leg. My problem is that I can't find a neurologist or back surgeon that will treat me do to the SCLS. They are trying to tell me that my back issues are the result of SCLS. I had back surgery resulting in a fusion with rods in 1991 and X-rays taken in Dec. 2010 that showed a ruptured disk and arthritis, but they are afraid of complications from SCLS. I don't agree! Has anyone run in this situation? How can I better educate them about SCLS? ...Donn

That's really very sad to hear! There is no evidence in the abundant literature on SCLS that back problems are a cause or a consequence of this illness. I'm no doctor, but if you are losing the use of one of your legs, it sounds like one of your nerves is being pinched and you need to be operated urgently -- before the damage is irreversible. If you cannot find a neurologist or back doctor in your area that will read the latest (vintage 2010) articles on SCLS featured in the Disorder Resources section of this website, which explain what the illness is and is not, then your alternative is to spend money on yourself and be seen and operated at a top medical center like Hospital for Special Surgery in New York (ranked #1 nationwide for orthopedics), or the Mayo Clinic in Rochester, MN (ranked #2), where they're not afraid to treat a patient with SCLS -- because they've done it before. (I say that you'll have to spend money because they may charge you more than Medicare or your insurance will reimburse, and you will have expenses related to travel and room and board.)

Thank you for the encouragement. I think because of how rare SCLS is, they are afraid of complications and don't want to be liable. I had a very prominent neurologist tell me he wouldn't touch me because of the unknowns. I am pushing the VA to treat my back issue & for the infusions.

Hello Donn, I fully agree with Arturo. I myself was operated last September for a shoulder reconstruction after a trauma. I did not presented any complication and did not had a new capillary leak. A neurological disorder that appears in case of ruptured lumbar disk is always a neuro-surgical emergency. Claude Pfefferlé

Don, I had arthoscopic knee surgery in Jan. of this year and ran into the same problem; fortunately my my doctor who has been treating my SCLS since '07 talked to my orthopedic surgeon and also contacted the anestheologist to keep an eye on me during surgery. I am on Medicare and so far they have been covering my various treatments along with my supplemental insurance but early on, Medicare didn't recognize SCLS as a disease. Hopefully your veterans coverage will take care of it. On a separate note, I left you a message under the discussion topic, "blood tests" about getting approval to go to NIH you might check out. Gene

I am hopingt he VA will come through and find someone in the system that will be willilng to treat me. I guess my only other option is to go to the ER and take my chances. Thanks for the info. ...Donn

I had both my hips replaced about 15 months ago and was fine. I did have a minor leak incident whilst in hospital which was managed by covering me with ice for the night- cold but I was OK in the morning. All the best

Sarah, Can you remember if you had a test that showed hemoconcentration after your surgery or was it continuous bleeding from the capillaries? I have problems with capillaries following surgery. I am searching to see if anyone in this group has a similar problem. Thanks, Bev

Bev. sorry I did not reply to this. No I did not have a blood test for this but wished in hindsight I had had one. Nobody knew what to do so I said 'get me cold' and it worked but took several hours on ice to do so.

Windows, do you think the surgery triggered the episode or was it just a coincidence ? I was seen by a neurosurgeon a couple weeks ago and now have been referred to a orthopedic doctor to rule out any hip issues. So far they have not brought up any issues with SCLS. A hip replacement would be and easier solution then rebuilding my back. ..Donn

I am not sure if it was the surgery. I was a quite stressed that day for various reasons so it could have been the surgery or the stress. I guess I will never know. I had both hips replaced 11 weeks apart. It was the best thing. I ever did .No more pain. One hip was terrible on XRay but the other hip looked OK until I had a scan,then it showed up there, but not on the Xray as it was in the back of that joint.They both were bone on bone and trapping both sciatic nerves so I had pain shooting down both legs 24/7 and especially bad at night.The pain has gone!. For years it was thought to be my back but it was my hips.

Thanks for that info. That may be my problem because I have pain from the groin, hip & knee in one leg but not the other. I had fusion done 20 years ago on the two lower disks and I thought maybe that was deteriating and causing the pain but only in one leg so the hip may be the culprit. A scan and x-rays show a lot of arthritis in that hip. Now if I can just get an appointment but the VA works very slow. Maybe the SCLS won't come up in a discussion if I have to have the hip replaced. ...Donn

hi i think that my opinion like that artur said i git right now 4 operation it was 2 under IVIG tratement i havent any complication after any and if god want next monday i ll going to have an operation in my right leg i hope for all ferst staing in good health and also for me second god bless oll of us yaser