My experience with the Barcelona Institute

 

Barcelona notes: 

The procedure in Barcelona is a minimally invasive surgery used to treat Filum Disease and Chiari malformation by cutting the filum terminale.

How It Works:

    •    A small incision is made at the lower back (lumbar area).

    •    The filum terminale is located and carefully cut to release tension on the spinal cord and brainstem.

    •    The procedure takes about 45 minutes to an hour and usually requires only local anesthesia with sedation.

    •    Recovery is typically quick (a few weeks), and risks are lower compared to traditional Chiari decompression surgery.

The idea is that by relieving tension on the spinal cord, the cerebellar tonsils may lift slightly, reducing symptoms without removing bone from the skull. It's a controversial approach, but some patients with mild symptoms and no CSF blockage find it helpful.

Potential questions to ask the Barcelona Institute:

Assessing Legitimacy & Outcomes

1. What published studies or peer-reviewed research support your procedure's efficacy?

2. What is your long-term success rate, and how do you measure improvement in patients?

3. Do you have patient outcome data (symptom improvement, complication rates, reoperation rates)?

4. Can you provide references to independent neurosurgeons or specialists who validate your method?

5. How many of these procedures have you performed, and how long have you been doing them?

6. Are there independent clinical trials on your procedure, or are all the studies in-house?

7. What are the main risks or downsides of your technique compared to traditional decompression surgery?

Understanding Your Candidacy

8. Why do you believe I am a good candidate for your procedure?

9. Would my Chiari size (19 mm) and my potential cervical instability (if present) affect my outcome?

10. How do you evaluate if I have tethered cord, Ehlers-Danlos, or craniocervical instability?

11. I have minor symptoms - am I still a good candidate and how do we measure success? 

Comparing to U.S. Approaches

11. Why hasn’t this procedure been adopted in the U.S.?

12. Have you attempted to get FDA or other regulatory approvals for this technique outside of Spain?

13. What do American neurosurgeons say when they review your results?

Practical Considerations

14. If I need additional care post-surgery, how would that be handled if I live in the U.S.?

15. What is the cost, and does insurance cover any part of this?

16. What is your follow-up protocol, and how do you track patient progress after the procedure?

17. How long do I need to stay in Barcelona before flying back to LA? 

My outcome and decision making: 

Hi everyone,

My husband and I spoke with the Barcelona Chiari Institute, and I wanted to share my impressions in case it’s helpful for anyone researching their approach. I wanted this to be an option for me SO badly.

Based on our conversation, it seems like they’re willing to perform the surgery on almost anyone, without clear, measurable outcomes. When we asked why their method hasn’t gained wider acceptance in the last 40 years, they didn’t have a strong answer—just that they plan to publish research papers soon. But after four decades, why now? That raised some concerns for us.

They also said that to truly determine if I’m a candidate, I’d need to travel to Barcelona for in-person testing. The procedure itself costs $21K, and since they can technically perform it on anyone, it feels like an easy revenue stream for them. Their explanation was that cutting the filum terminale is like cutting the umbilical cord at birth—implying that we don’t need it, so why not remove it? But ultimately, it’s a gamble, and they don’t have a way to definitively track or guarantee results.

That said, there do seem to be a lot of success stories, which is why it’s tempting. I just wish they had more research and clinical trials to back up their theory. It would also be reassuring to see other surgeons and researchers building upon their approach, but since they’re one of the only places in the world offering this procedure, it makes me hesitant. I know Chiari is rare, but if this were truly a game-changing solution, I feel like the U.S. medical community would have adopted it by now.

So, overall, I’m disappointed. If you have the money, and really don't want decompression surgery, and are comfortable taking a risk, this could be an option. But for me, I just don’t know if it’s truly effective.

Hope this helps!