Diaphram Pacing Stimulation

[Snette]

Does anyone know where this procedure can be obtained outside the US for ALS patients?

If you have any other relevant information to share, it would be appreciated.

Thanks

 

[Al]

Why do you want to go outside? I'm told it is available in the U.S.

AL.

 

[Snette]

Hi Al,

This procedure/medical treatment is not approved by the FDA for ALS patients; therefore the only option is out of the country. This has been verified with all Drs/clinics in the US. We have an email out to the manufacurer of the device, but have not heard anything back from them.

My friend started having symptons in July w/bulbar onset. She was diagnosed with ALS Tuesday before Thanksgiving. She was told on December 11th that she will need to get a respirator in the next 2 months. She is losing her lung function fast.

Any leads on whom we can contact, no matter how remote, will be appreciated.


PS. Your site has really helped me understand this disease and I want to say thanks to you and everyone who participates on this site.

 

[ZenArcher]

http://www.synapsebiomedical.com/clinicals/als.shtml

There is contact information on that page and they should also be able to tell you when/if another clinical trial will get underway.

 

[Al]

I was in contact with the company 2 years ago regarding the procedure and thought it was available if you wanted to pay for it yourself. I guess things have changed since then. I think they were doing it out of the Cleveland Clinic. I'll go back and check their website.

AL.

 

[Snette]

Thank you, ZenArcher.

Al, I will appreciate anything you can find. Thank you.

 

[jennyhoff]

Dps

This is the most recent I could find about Dr. Onders in Ohio. I don't know much other than I know several people that have traveled to him and had the procedure done and have been very happy. I hope this helps!

http://www.physorg.com/news133008368.html

Jenny

 

[jennyhoff]

Dps

Oh, here is another good slideshow regarding DPS. I was in Boston last year and got to see him present about the procedure-very educational.

http://www.als.net/presentation/Onders-UHCMC-webversion_files/frame.htm

jEN

 

[Snette]

Hi Jennifer,

Thank you so much for the slide show and other information! It is my understanding that my friend has contacted Dr. Onde and he will not perform the surgery in the US (FDA and all =(. That is why we are trying to find somewhere in Europe to have the procedure done.

 

[Tall John]

Augie Nieto

I thought he had it done here ?

 

[warrior]

Diaphragm Pacing Availability

We too have been looking for a place that can successfully do the Diaphargm Pacing procedue. I uderstand Fores Norris ALS Center in S. F. is doing a study on this but the study is closed for now. If anyone finds a place and the pricing for it, please do post it. Warrior

 

[papadoug]

two hospitals on west coast do the surgery. Your FVC can't be below 45% I believe. The FDA thing is for insurance coverage.

 

[Snette]

Hi PapaDoug,

Thank you. Do you know which hospitals on the West Coast?

Also, thanks for the FDA heads-up about insurance.

 

[Jennifer51]

We too have been looking for a place that can successfully do the Diaphargm Pacing procedue. I uderstand Fores Norris ALS Center in S. F. is doing a study on this but the study is closed for now. If anyone finds a place and the pricing for it, please do post it. Warrior

For people from the UK...I just went to the London Chest Hospital...suppossed to be about the best in the UK...I asked about the proceedure and they did not do it as they did not think it was any good.. I also asked about breathing exercises and in particular the Ultrabeathe Respiratory trainer...which was recommended by someone else on this forum...he said that was good to do....

 

[ZenArcher]

I'm not sure what they define as good but based on the published studies thus far diaphragm pacing delays the need for a ventilator in ALS patients. In my book that's pretty good.

The abstract is available on PubMed but here is the conclusion :

Conclusion This multicenter experience has shown that laparoscopic diaphragm motor point mapping, electrode implantation, and pacing can be safely performed both in SCI and in ALS. In SCI patients it allows freedom from ventilator and in ALS patients it delays the need for ventilators, increasing survival.

I have a clinic appointment tomorrow and will try to remember to ask about dps.