Caution - Adherus adhesive hole in patch
Posted , 3 users are following.
My 13 year old daughter was diagnosed with Chiari Malformation and consequently had a decompression surgery. Following the surgery she had a rough recovery and it turned out that a hole had formed in the dural patch that was installed in her dura mater. Once determined, she quickly had another surgery to repair the hole. Through the process we befriended the family in the neighboring ICU unit and learned that their son had the exact same surgery and the exact same problem, resulting in the exact same curative surgery to repair the hole in his patch. In speaking with the surgeon we learned that the holes were created from a reaction in which an adhesive (Adherus developed by Hyperbranch) that was used during the surgery essentially ate a hole through the bovian patch that was installed. Has anyone else experienced a hole in their dural patch? Or, has anyone experienced leaking through the patch that could have been caused by a sealant?
I have reported the incident to the FDA. They acknowledged receipt of the complaint, but I am not aware of an outcome.
If you are scheduled for surgery please make sure you inquire into the use of the Adherus adhesive.
0 likes, 4 replies
julia_89059 brad_52198
Posted
what were your daughter's symptoms? i have been having a lot of symptom since my decompression but i don't think i got the dura patch and i'm trying to figure out what could it be.
brad_52198 julia_89059
Posted
She had a sizable lump just below the base of her skull from the spinal fluid leaking through the hole. It was very noticeable.
nihilo brad_52198
Posted
Yeah I leak!
Had decompression nearly 5 years ago due to a very large syrinx and now have an egg sized lump of csf at the bottom left of my skull. I have days where my symptoms flare up and the lump is visibly larger.
For a long time I wanted it gone but my ns says more surgery could cause more complications and that I should aim to get another 10 years out of this surgery before risking it.
I get annoyed at being told the patch leaking is a "normal" complication seen after decompression surgery. It is very uncomfortable and sound resonates through and is amplified/distorted by it so it doesn't feel normal .
I have, however, trained myself not to worry about it . This was not easy and took time and practice. I felt like my ns and doctors can't help me further and weren't addressing how much the leak bothers me so it felt scary.
I have lived with my leakey squishy head for years now so please contact me if you ever want to ask anything from someone who has learnt how to live with it. I would love to be able to help you find some shortcuts if possible
brad_52198 nihilo
Posted
That is very unfortunate that you have to live with that. I'd be curious to know if the adhesive they used was Adherus. My NS told me that he has only once experienced leaking in a patch prior to my daughter's experience. I would question your NS in respect to the commonality of leaking.