7 replies to this topic

[sammy]

Life has changed 100% for the better now that the ventilator is living in the closet and my brother is living his life vent-free. He had a diaphragm pacer implanted before the holidays and is doing great. He is almost 24 hours vent free. It is amazing. He can smell cinnamon rolls!!! And his greatest fear -- of popping the vent -- is gone (hopefully) forever.

Just wanted to share this GREAT news. PLEASE, please look into this, if you are on the vent. He had his surgery at University Hospitals in Cleveland. But they do the out-patient implant at various hospitals. Insurance covered his surgery and device. If you look at the company's website you can get more info: It is SynapseBiomedical.com and they have good follow-up with battery replacement too. I think he just filled out the questionnaire and someone called him pretty quick. It was less than a month from contacting the company till his surgery.

Good luck everyone. It is so quiet in his house without the humming of that vent!!

Sammy

[Avocado Baby]

That's brilliant news! I'm chuffed for you both!

[aggzy]

hi sammy

i am looking into a pacer now

can i ask at what level is your brothers sci?

what was the process he went through to get the pacer..ie... tests ect...

thanks

Ag's

[sammy]

He's C1, but I believe C1-C4 are able to use it. Totally vent dependent patients are receiving this implant. I believe he had a test done pre-surgery to test the nerve to his diaphragm. He called the company, scheduled the surgery and was breathing all within a month. A quick and amazing process.

Hope it can work for you too!!

Sammy

aggzy, on Jan 31 2009, 06:22 PM, said:

hi sammy

i am looking into a pacer now

can i ask at what level is your brothers sci?

what was the process he went through to get the pacer..ie... tests ect...

thanks

Ag's

[kelli haggerty]

I'm so happy for your brother. How amazing!!!!!! My son David has been 100 percent vent dependent since october 2004. His injury is a C1 complete. I can't believe that there may be hope for him to be vent free, even partially vent free. Is your brother's injury a C1 complete? Did his insurance pay for the entire procedure, or partial? Did he have it done in Ohio? I looked up the website immediatly and wrote to them. I pray they can help. Do you have any advice?

Kelli Haggerty,
A desperate Mother

[wheeliebear75]

That is AWESOME!!!

I'm sure that it must be a great relief to not worry about the tube popping off or any lengthy power outages.

[sammy]

Yes, C1 complete. His insurance, I believe, paid for it. The surgeon in Cleveland is the one who performed Christopher Reeve's surgery -- when it was still experimental. Now it is FDA approved, so many other surgeons in different hospitals are doing it. Cleveland was close for us, but I'm sure it is the same procedure at any of the approved centers. I was quite shocked at how quickly they scheduled him for the procedure. I guess they know how important it is to restore diaphram function, ASAP, if possible.

I really believe in getting as much info as possible. You never know what will work for you and what won't. But it's free to ask and you might learn something. I hope it works for your son.

Fingers crossed,
Sammy

kelli haggerty, on Feb 1 2009, 05:19 PM, said:

I'm so happy for your brother. How amazing!!!!!! My son David has been 100 percent vent dependent since october 2004. His injury is a C1 complete. I can't believe that there may be hope for him to be vent free, even partially vent free. Is your brother's injury a C1 complete? Did his insurance pay for the entire procedure, or partial? Did he have it done in Ohio? I looked up the website immediatly and wrote to them. I pray they can help. Do you have any advice?

Kelli Haggerty,
A desperate Mother

[laurietoddiw]

sammy, on Jan 30 2009, 10:24 PM, said:

Life has changed 100% for the better now that the ventilator is living in the closet and my brother is living his life vent-free. He had a diaphragm pacer implanted before the holidays and is doing great. He is almost 24 hours vent free. It is amazing. He can smell cinnamon rolls!!! And his greatest fear -- of popping the vent -- is gone (hopefully) forever.

Just wanted to share this GREAT news. PLEASE, please look into this, if you are on the vent. He had his surgery at University Hospitals in Cleveland. But they do the out-patient implant at various hospitals. Insurance covered his surgery and device. If you look at the company's website you can get more info: It is SynapseBiomedical.com and they have good follow-up with battery replacement too. I think he just filled out the questionnaire and someone called him pretty quick. It was less than a month from contacting the company till his surgery.

Good luck everyone. It is so quiet in his house without the humming of that vent!!

Sammy

Hi Sammy --

My name is Laurie Todd. I am a survivor of appendix cancer who fought my own battle to get my lifesaving treatment paid for in 2005, and have been helping others ever since. I am writing an appeal for a patient from New York with ALS who needs the pacer, and whose insurer has denied it.

Is it possible to find out who your brother's insurance company is that paid for this? In order for a case to be useful in convincing insurance companies to pay, I would need your brother's first and last name, name of the insurance company, and date that he got the pacer.

If they would like to talk to me, my info is:

Laurie Todd
email: laurie(at)theinsurancewarrior(dot)com
phone: 425 497-1858

My website: www(dot)theinsurancewarrior(dot)com


Thanks,

Laurie Todd

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