Experiences - Avery Biomedical Devices · cervical SCI with a pacing device instead of mechanical...

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


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


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?


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


Tracheostomy

• CCHS (15) - 3 had tracheostomy; all decannulated

• Other (13) – 8 had tracheostomy, 2 decannulated, 1 about to, 2 unknown


CCHS (15)

• Genetics • 20/25 - 2

• 20/26 - 2

• 20/27 - 3

• Rohan - 1

• Unknown – 5

• PM • 2


Deaths

• CCHS – no deaths

• Other – 3 deaths, 1cardiac arrest (tetraplegia), 1 aspiration (MMC), 1 unknown


• Questions and development • Airline compatibility?

• Probably OK but a worldwide approval is urgently needed


Breaking News!


Emil



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!!!!

http://www.leoblog.pl/en/3233-february-25-2016-mr-well-rested/









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


• 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!


Emil with siblings

Further Development

• Modulation of stimulation amplitudes?

• Implantable & rechargeable device?


• Problems • Upper airways

• Secure antenna positioning

Experiences - Avery Biomedical Devices · cervical SCI with a pacing device instead of mechanical...

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