Omaya Reservoir / Intrathecal Port

Question:  are there any NPC patients that were able to keep & use their Omaya reservoir longterm? J’s had to be removed a month after it was put in because of infection back in 2013. Now one of her doctors wants us to consider putting another one in so she can get cyclodextrin again without having to do the LP’s.

Responses from the community:

*LGH

we’ve touched base on the side already but wanted everyone following this/interested, P has had an intrathecal PORT since 2014 (in addition to the IV Smart Port from 2010) – so for 7 YEARS TWICE MONTHLY it’s accessed for cyclo treatments. It is placed with a line from the spinal cord to the front where the port sits just below his ribcage, and as you know with NO SEDATION. K still continues to receive her treatments without sedation in the spine. Dr. Lissa Baird (at the time at OHSU), neurosurgeon had experience of surgically placing many of these, and was on the call we had with the FDA ensuring of its safety and benefit. She has since moved to Boston as you’ve found out. We provided the protocol as a reference to the NIH and Vtesse but sadly it was never used in any trials to my knowledge.

*TK

Yes,thank you so much for sharing this. I’m so disappointed no one else has mentioned it as a possibility before because I have asked both @ NIH & to people at Vtesse. Praying we can get this approved for J.

Posted in

Send a Comment

If you have anything you can add to this discussion that can help future NPC Families, please submit it here.

Comments

"*" indicates required fields

Name*
Consent*
This field is for validation purposes and should be left unchanged.

Archives