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Respiratory Disorders (Expert Forum)
Bilateral abductor vocal cord paralysis (BAbvcp) ;stridor, and a syrinx
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Bilateral abductor vocal cord paralysis (BAbvcp) ;stridor, and a syrinx
by agchg, May 19, 2002 12:00AM
In '84 we lost our 23 month old youngest daughter after corrective surgery for BAbvcp.
We were told that this could be hereditary; our surviving children both having stridor.18 months ago our eldest daughter asked me to look into this. I also looked at the hypermobility problems that myself, daughter and son have.
My son & I have seen geneticists, & a rheumatologist to try & find out more for our daughter. We've an as yet undiagnosed connective tissue disorder. I was initially diagnosed with Hypermobility syndrome, altho' I questioned it could be Ehlers-Danlos syndrome, as I'd met the founder of the EDS support group in the UK, who thought I had this.
When the rheumatologist saw our son he commented not only on his hypermobility, but on his "marfanoid habitus", & thought that as our youngest daughter had pectus carinatum at about 1 year old, whilst he has pectus excavatum, which didn't appear until adolescence, myself, and all 3 children have been affected in very different ways.
My research had led me to think that our youngest daughter's BAbvcp could have been caused by Chiari 1 malformation.
Our son has recently had a MRI scan, which shows he has a non-communicating syrinx at C6-7. Syringomyelia is often found associated with Chiari malformations..the neurosurgeon's report states that he has a syrinx.. but this isn't a syrinx, nor syringomyelia..but rather a neurodevelopmental cleft! Those words don't make sense to me, especially with our family history.
Our eldest daughter is now 36 weeks pregnant;I would appreciate any input on this.
Thank you
We were told that this could be hereditary; our surviving children both having stridor.18 months ago our eldest daughter asked me to look into this. I also looked at the hypermobility problems that myself, daughter and son have.
My son & I have seen geneticists, & a rheumatologist to try & find out more for our daughter. We've an as yet undiagnosed connective tissue disorder. I was initially diagnosed with Hypermobility syndrome, altho' I questioned it could be Ehlers-Danlos syndrome, as I'd met the founder of the EDS support group in the UK, who thought I had this.
When the rheumatologist saw our son he commented not only on his hypermobility, but on his "marfanoid habitus", & thought that as our youngest daughter had pectus carinatum at about 1 year old, whilst he has pectus excavatum, which didn't appear until adolescence, myself, and all 3 children have been affected in very different ways.
My research had led me to think that our youngest daughter's BAbvcp could have been caused by Chiari 1 malformation.
Our son has recently had a MRI scan, which shows he has a non-communicating syrinx at C6-7. Syringomyelia is often found associated with Chiari malformations..the neurosurgeon's report states that he has a syrinx.. but this isn't a syrinx, nor syringomyelia..but rather a neurodevelopmental cleft! Those words don't make sense to me, especially with our family history.
Our eldest daughter is now 36 weeks pregnant;I would appreciate any input on this.
Thank you
Doctor's Answer
by National Jewish, Jun 24, 2002 12:00AM
, Jun 24, 2002 12:00AM
The geneticist would be the best resource for further information about your family’s health situation.
