Results 1 to 5 of 5

Thread: Advice for international patients going to Cedars?

  1. #1

    Default Advice for international patients going to Cedars?

    Hello people,

    It's been a very long time since I've posted here, but I was wondering if anyone has advice or experience to share about getting to Schievink from abroad?

    My husband has been leaking for almost 10 years and finally got a confirmed diagnosis last October. Dr. Schievink has agreed to treat him, which at the outset was very good news. Now we just need to get there (from Germany) ... and pay for it out of pocket, the logistics of which are completely overwhelming.

    Specifically, he is unable at this point to stand, lean forward or sit up straight for more than a few minutes at a time before being overwhelmed by pain and nausea, leading to falling down and passing out, so a commercial flight is pretty much out of the question. Plus, he can't travel alone, which would mean not one ticket, but four, since we can't leave our small children here alone. I've been looking into Angel Flights, but the ones I've found are either domestic only (US) or for cancer patients.

    Also, our insurance here won't cover any of the costs, which are preliminarily estimated at $20,000 for the week (MRI, CT, office visit and blood patch - which may or may not work, as I'm sure you all know) and which doesn't include transportation, lodging, food, and whatever else needs to be paid when away from home. That is the cash-discounted price. Does anyone know of mercy funds or financial assistance available?

    Has anyone else been in this situation? And if so, how did you manage it? Any information or shared experience would be most welcome!

  2. #2

    Default

    Hi. I am glad your husband finally received a diagnosis after 10 years. As you know, getting to LA from Germany, with 2 small children and your husband feeling so bad will not be easy. I hope you get some good tips on this forum or possibly other leak forums (ie csfleak.org). The only tip I recommend is a reclining wheelchair if you do not already have one. This really helped my son when he leaked. Good luck with your travel plans and I hope your husband gets healed!
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  3. #3

    Default

    Jeanne,

    Thanks for the tip, and the good wishes - I didn't know that wheelchairs reclined! I will definitely look into this, regardless.

  4. #4

    Default

    Have you talked to Dr. S's office staff regarding any programs to look into? He seems to have treated so many patients abroad, I imagine this is not the first time it has come up. If you haven't already, I really hope you find some way to see Dr. S. I flew cross-country to see Dr. S for a spontaneous leak and it was the best decision I ever made. The one thing I would recommend for the recovery is to stay local in LA for a little bit of time after the blood patch procedure. I flew out 2 days after the procedure, and I was still experiencing a lot of high pressure making the flight very uncomfortable.

    I know the cost is very intimidating, but as for the bills, they are very flexible with payment plans.

    I'm a bit late to post, so have you and your husband travelled there yet? If not, I have a friend who works for a Lufthansa... I could ask her what they would do in this type of situation...

  5. #5

    Default

    Quote Originally Posted by squeakysmum View Post
    This quote is hidden because you are ignoring this member. Show Quote
    My husband has been leaking for almost 10 years and finally got a confirmed diagnosis last October. Dr. Schievink has agreed to treat him, which at the outset was very good news. Now we just need to get there (from Germany) ... and pay for it out of pocket, the logistics of which are completely overwhelming.
    hi, squeakysmum, I'd suggest that you consider first pursuing treatment in Germany instead of subjecting your family to the financial and emotional trauma of traveling to LA, especially if the treatment doesn't work, a possibility that you mention. (If you've followed these leak forums, you'll know how small the chance is that blood patches solve the headache.)

    Blood patches are performed all over the world, even at community hospitals. Doctors there need to patch up many patients that are tested for meningitis. I think that the high-volume blood patches Dr. Schievink uses are risky and unproven over conventional ones. They are also very expensive. I've been through all that with no results. To get a leak diagnosis with Schievink, you just need to show up. At least that's what I did. Now I see all this in a different light, the strange triage and the feeder fan clubs now flourishing in greener pastures. Some doctors respect him of course. But don't be impressed just by the fact that he has accepted your husband as a patient. Your mileage may vary, so to speak, but it's a long way...

    If your German doctor has diagnosed your husband with a leak, then why can't he be treated there? Germany has a highly competent medical system that delivers very good care AFAIK. You'll also enjoy less risk of medical overtreatment, an endemic danger in the US. If needed, CT angiograms and MRI would be just the same in Germany as in the US, I'd think. You'd have to find a German university hospital, but likely your hubby would already have gone to such a center already for his diagnosis.

    Ten years is a very long time to be sick. I feel bad for him (and you), and I hope you can find serious care where you are. If all other options, the basic standard of care, exhaust themselves, then that'll be a time to go abroad. Some of the Northern European countries, like the UK, have become quite flexible in supporting their citizens seeking medical treatment abroad that's not available in their home country. Don't know whether it applies to Germany.

    best wishes/Viele Gre

    punctured

Similar Threads

  1. TOTAL PML CASES in MS PATIENTS ON TYSABRI
    By agate in forum Multiple Sclerosis
    Replies: 178
    Last Post: 10-11-2017, 01:08 PM
  2. Replies: 0
    Last Post: 03-14-2012, 09:02 AM
  3. Replies: 0
    Last Post: 01-20-2012, 09:19 PM
  4. Replies: 2
    Last Post: 12-06-2011, 09:37 AM
  5. Dr. Schievink at Cedars - - Blood Patch Procedure
    By LeakingnHissinginPotomac in forum Cerebrospinal Fluid (CSF) Leak
    Replies: 0
    Last Post: 08-16-2011, 09:45 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.