Post on 14-Mar-2020
transcript
Experiences From Uppsala, Sweden
2016-10-14 Anders Jonzon, Uppsala, Sweden
Demographics - CCHS Gender Date of birth implantdate age at impl age today diagnosis
Female 2009-12-12 2013-03-21 3,27 6,84 CCHS
Female 2006-06-16 2010-03-15 3,75 10,34 CCHS
Female 2006-05-17 2010-03-16 3,83 10,42 CCHS
Male 2009-02-11 2012-12-13 3,84 7,68 CCHS
Male 2009-06-03 2014-01-29 4,66 7,37 CCHS
Male 2010-12-16 2015-09-02 4,72 5,83 CCHS
Female 2001-07-10 2006-08-28 5,14 15,27 CCHS
Male 2005-07-11 2011-05-05 5,82 11,27 CCHS
Female 2005-11-05 2012-03-22 6,38 10,95 CCHS
Male 2007-12-28 2014-10-30 6,84 8,80 CCHS
Female 1981-02-11 1989-02-07 7,99 35,70 CCHS
Female 2003-10-17 2012-02-08 8,32 13,00 CCHS
Male 1980-06-17 1988-10-24 8,36 36,35 CCHS
Female 1993-12-22 2009-01-14 15,07 22,83 CCHS
Female 1996-03-09 2014-06-12 18,27 20,61 CCHS
2016-10-14 Anders Jonzon, Uppsala, Sweden
Demographics - Other Diagnoses Gender Date of birth implantdate age at impl age today diagnosis
Female 1991-10-20 1994-12-13 3,15 25,00 MMC
Female 2009-06-19 2012-12-04 3,46 7,33 tetraplegi,st post ecephalitis
Female 1982-03-09 1985-11-01 3,65 34,62 tetraplegi
Male 1988-02-04 1994-01-01 5,91 28,71 MMC
Male 2005-01-17 2015-09-02 10,63 11,75 tetraplegi,st post CVL
Female 1985-01-10 2000-03-31 15,23 31,78 tetraplegi
Male 1992-09-15 2008-08-26 15,96 24,10 tetaplegi
Male 1993-12-17 2010-03-15 16,25 22,84 MMC
Male 1992-03-21 2009-01-14 16,83 24,58 MMC
Female 1991-05-21 2015-05-04 23,97 25,42 ??
Male 1948-10-04 1987-04-22 38,57 68,07 sleep anpnea?
Female 1965-02-22 2009-08-31 44,55 51,68 tetraplegi
Male 1922-05-23 1986-01-01 63,65 94,46 teraplegi 2016-10-14 Anders Jonzon, Uppsala, Sweden
Age/Diagnoses at Implantation
• CCHS (15) - 3,3 to 18,3 years
• MMC (4) - 3,1 to 16,8 years
• Tetrapl & Other (9) – 3,5 to 63,7 years
2017-01-04 Anders Jonzon, Uppsala & Stockholm Sweden 4
2017-01-04 Anders Jonzon, Uppsala & Stockholm Sweden 5
Why change mode of ventilation?
Complications
• CCHS – 1 late infection, 1 early infection, 1 malfunc receptor, 1 reposition of receptor
• Other – 1 late infection, 1 (late) calcified receptor, 1 malfunc recetor
2016-10-14 Anders Jonzon, Uppsala, Sweden
Tracheostomy
• CCHS (15) - 3 had tracheostomy; all decannulated
• Other (13) – 8 had tracheostomy, 2 decannulated, 1 about to, 2 unknown
2016-10-14 Anders Jonzon, Uppsala, Sweden
CCHS (15)
• Genetics • 20/25 - 2
• 20/26 - 2
• 20/27 - 3
• Rohan - 1
• Unknown – 5
• PM • 2
2016-10-14 Anders Jonzon, Uppsala, Sweden
Deaths
• CCHS – no deaths
• Other – 3 deaths, 1cardiac arrest (tetraplegia), 1 aspiration (MMC), 1 unknown
2016-10-14 Anders Jonzon, Uppsala, Sweden
• Questions and development • Airline compatibility?
• Probably OK but a worldwide approval is urgently needed
2016-10-14 Anders Jonzon, Uppsala, Sweden
Breaking News!
2016-10-14 Anders Jonzon, Uppsala, Sweden
Emil
2016-10-14 Anders Jonzon, Uppsala, Sweden
2016-10-14 Anders Jonzon, Uppsala, Sweden
February 25, 2016 - Mr Well-Rested Before the operation doctor Anders mentioned, that people sleeping with the pacers have much better sleep quality, than those using the ventilator. Leoparents thought that it was great, but they didn't exactly knew at that time, what does it mean. What does it mean to have a well-rested child... And a well-rested child, it's a completely new child. Eruption of energy, volcano of jokes, geyser of ideas. It's a child frisky and frolicsome. It's a child running everywhere, climbing up the tables, which was of no interest for him before. It's also a child more confident, loquacious and giggling all the time. It's also a child stubborn and resolute! A rested child behaves a bit like a cat under the influence of catmint. All people, who don't like the aforementioned features, should really rethink changing a ventilator into pacers. But Leoparents are extremely happy!!! But they still can't stop wondering how it was possible in such a short period of time. It's been just two weeks!!!!
2016-10-14 Anders Jonzon, Uppsala, Sweden
Dear Leoblogreaders, I guess we might state now, with a bit of shyness, that the life of Leofamily has a chance to become a bit less difficult!!!! :-) Now the next step of our dreams - decannulation !!!!
Phrenic Pacing
2016-10-14 Anders Jonzon, Uppsala, Sweden
• Advantages • (In)dependence
• Keeps the diaphragm in shape
• Posture
• Infections?
• Simplicity
• Sleep quality
• Decannulation
• Speech
• LIFE QUALITY
• Quality of lifeAlthough this was not a controlled study due to the inherently different composition of the two treatment groups, the investigators observed that treatment of respiratory insufficiency after cervical SCI with a pacing device instead of mechanical ventilation resulted in the following benefits:
• Significantly reduces upper airway infections,
• · Reduces cumulative health-care cost,
• · Improves quality of speech,
• · Improves quality of life,
• · Reduces mortality and prolongs life.
Dr. S. Hirschfield and colleagues (Germany and Finland)
Quality of life
• In a small study we found that patients using phrenic pacing had a life quality comparable with those of diabetes!
2016-10-14 Anders Jonzon, Uppsala, Sweden
Emil with siblings
Further Development
• Modulation of stimulation amplitudes?
• Implantable & rechargeable device?
2016-10-14 Anders Jonzon, Uppsala, Sweden
• Problems • Upper airways
• Secure antenna positioning