My wife was diagnosed with SCLS about 3 weeks ago, based on an incident of extremely low blood pressure, hemoconcentration, and fluids 3rd spacing into every part of her body...we are still in the hospital's inpatient rehab facility at this point as she recovers from the edema issues that were created from the leaking, and from being bed-bound for nearly a month (requiring extensive PT to get to walking again).
We are in a unique situation, in that we travel full-time in an RV, and therefore, can take her anywhere for treatments, but don't know which path to choose.
When her first "attack" began, we were 7 hours from home, down in far south Texas, and had intended to stay in this are for about 2 months - which has turned out to be a good thing, as it will likely be pretty close to that by the time we get out of rehab, and get our ducks in a row for the next steps.
As for next steps, we have become well aware that monthly IVIG treatments are the best preventative course of action to try to minimize and/or eliminate future attacks, but again, are not sure where to go to start those treatments - our options seem to be:
1) Even though we are now discharged from the hospital, and in rehab now, we'd try to individually meet with one of the doctors we saw here, and try to set up an initial dose of IVIG while still here, and figure out the ongoing doses with another doctor.
2) Return to the Houston area (7 hours by RV, or 1 hour by plane), to try to locate an expert in the SCLS area there.
3) Visit the Mayo Clinic in MN, in order to confer with 2 doctors that responded to family emails, regarding providing guidance as to if this was ultimately SCLS.
4) Visit the NIH in MD, in order to confer with Dr. Druey, who did speak directly with her doctors, and did state that her presentation seemed to be a "classic case of SCLS".
Again, because we have an RV, and travel full-time, we consider any of these options to be possible - although for further away destinations, we would likely put the wife on a plane (with family), and I would drive the RV to the destination...thus allowing us to easily stay weeks, or months, in a given area.
My initial thoughts on these various choices are:
Choice 1 seems promising, but there are also concerns as to if insurance would be more likely to balk at covering the IVIG treatments, without more of an expert treating her for the SCLS. This choice would likely give the most peace of mind, as it has been nearly a month since her initial attack.
Choice 2 is closer to some family, but not knowing of a specific doctor with experience with SCLS in the Houston area makes it a bit of an unknown. If anyone here is seeing a doctor in the Houston area specifically for SCLS, I would appreciate if you could share their name. Or, even if you are seeing a doctor for your SCLS anywhere in Texas, and you would highly recommend them, please share!
Choice 3 seems promising, just because it is the Mayo Clinic, but we also don't want to forever be in MN (especially not for a winter in a thin-skinned RV), and wonder if we need to try to establish more of an Internal Medical doctor in the Houston area first, then go to Mayo - although the hospital here in south Texas, is supposed to be getting us referral appointments to Mayo now.
Choice 4 seems like it is something to later, becoming part of Dr. Druey's study, but that he would not be someone that would start her on, or be able to oversee, ongoing IVIG treatments. For anyone that has participated in Dr. Druey's study, can you speak to your experiences in general?
I'm happy to hear anyone else's thoughts on the choices above, or additional choices you can imagine!
In addition, if there is anyone out there that has travelled extensively while also receiving the monthly IVIG treatments, can you provide any thoughts on your experiences?
I would think that there would be a network of infusion centers throughout the U.S. that could handle the treatments (although it might require lots of extra legwork from whomever our doctor finally becomes)...plus, I had seen something in 1 publication that spoke of a patient, who after doing 2-3 monthly IVIG treatments, was giving the option to just inject herself every day or 2 with smaller doses, in order to get the same amount of IVIG over time - not sure if that was in the states, or over in Europe though.
Thanks again in advance for any thoughts, opinions, guidance, or advice that anyone has to share!