Graybeard
Distinguished member
- Joined
- Sep 24, 2014
- Messages
- 440
- Reason
- PALS
- Diagnosis
- 12/2013
- Country
- US
- State
- Ca
- City
- Surf City
I tagged this onto my original thread, but seems to have gone unnoticed.
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This was forwarded to me by a third person as part of a clinic visit last week:
"Cedars-Sinai is in the process of signing up qualified ALS patients for a clinical trial of a device called a "Pulmonary Pacemaker.” It involves the surgical implantation of five wire probes into your diaphragm that are brought together and exit the body at a single point. They are terminated in a USB connector (just like on your computer) that remains on the outside of your body. A small, handheld, module is hooked up to the USB connector that controls the expansion of your diaphragm.
So far, the 50, or so, surgeries that have been performed have shown mixed results. One third were beneficial, 1/3 showed no benefit while 1/3 resulted in the patient wishing that they never had consented to the procedure. So. 2/3’s of the results were not positive. On top of this, 50% experienced a collapsed lung, during the procedure, that required re-inflation and an additional night in the hospital.
Ultimately, the benefit might be the extension of the time before the point arrives where one needs to be placed on a ventilator. The ability for the Pulmonary Pacemaker to work successfully is a function of the condition of the Phrenic Nerve. And, the Phrenic Nerve is supported by Motor Neurons, the cells that are faulty because of ALS.
Bottom line, D. does not want to undergo something that has several risk factors and that will have questionable benefits, at least at this early point of testing."
-----------
This was forwarded to me by a third person as part of a clinic visit last week:
"Cedars-Sinai is in the process of signing up qualified ALS patients for a clinical trial of a device called a "Pulmonary Pacemaker.” It involves the surgical implantation of five wire probes into your diaphragm that are brought together and exit the body at a single point. They are terminated in a USB connector (just like on your computer) that remains on the outside of your body. A small, handheld, module is hooked up to the USB connector that controls the expansion of your diaphragm.
So far, the 50, or so, surgeries that have been performed have shown mixed results. One third were beneficial, 1/3 showed no benefit while 1/3 resulted in the patient wishing that they never had consented to the procedure. So. 2/3’s of the results were not positive. On top of this, 50% experienced a collapsed lung, during the procedure, that required re-inflation and an additional night in the hospital.
Ultimately, the benefit might be the extension of the time before the point arrives where one needs to be placed on a ventilator. The ability for the Pulmonary Pacemaker to work successfully is a function of the condition of the Phrenic Nerve. And, the Phrenic Nerve is supported by Motor Neurons, the cells that are faulty because of ALS.
Bottom line, D. does not want to undergo something that has several risk factors and that will have questionable benefits, at least at this early point of testing."
