Hey everyone! Sorry we haven't posted in awhile. Things have been busy! Jason had a nerve block done today and I think it helped a bit(which is good, if it lasts long enough it will be cheaper than the meds he's on!)
We got some disappointing news today. If you read our previous post about the intercostal nerve transfer, we had a little hope. But today when we called Brenda at Dr. Nath's office she said that even if Jason's health insurance would agree to pay for the surgery, they did not accept it(which I understand b/c we are in another state)However, she wasn't the nicest person about it and really upset us. She told us the only way Jason could have it done was if we paid $60,000 up front. Well, we don't have that kind of money given we were both injured and haven't returned to work. We are trying to go public with this so we called all the news stations in hopes of getting our story out and maybe people will help with donations. Has anyone else tried this approach?
We were wondering if any of you have run into this problem and what can be done about it. Any info will help, as did all the other info we've recieved(thank you so much)! We are both really down about this given that we are running out of time. It must be done in 3-5 weeks or it won't work.
We wish we could offer more info to other members, but there is still sooo much we don't know.
Thanks all and have a great day!
Jason & Amy
Can't afford surgery--any suggestions
Re: Can't afford surgery--any suggestions
Well- I think you should start calling all the other bpi centers in the nation and see if they accept your insurance... where are you located? How about Dr. Kline in New Orleans? And you can also call the international centers as well and see what they can do for you... (i.e. Pr. Gilbert in Paris and Dr. Raimondi in Italy, etc.)
On my site there is a listing for patient advocacy sites and some foundations that may help pay your medical expenses...here is the link - they are at the bottom in the misc section
http://www.injurednewborn.com/resources.html
I'm really sorry this is happening to you and hopefully you will work it out somehow $60,000 is a big chunk to raise!
Where do you live?
-francine
On my site there is a listing for patient advocacy sites and some foundations that may help pay your medical expenses...here is the link - they are at the bottom in the misc section
http://www.injurednewborn.com/resources.html
I'm really sorry this is happening to you and hopefully you will work it out somehow $60,000 is a big chunk to raise!
Where do you live?
-francine
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Can't afford surgery--any suggestions
really sorry to hear that, francine's right call up other bpi specialists and see if they will take yr insurance. i've heard other people say the charm vanishes when there are $ required, that just makes it seem worse. There are some posting here who have never seen a bpi specialist at all through lack of insurance/money, and now can't get any insurance because of the bpi..it's very sad and must make acceptance harder, i do feel for you both. Best of luck in your search, keep us posted....
Re: Can't afford surgery--any suggestions
I am one of them that has been down your road sad to say. I had two nerve blocks and would advise you to find out what is in their cocktail shot before Jason has a second injection. In order for those shots to work you need to get them every two weeks and only for a maximum of ten injections. My first one had no side effects but the second went really bad! I will fight the after effects of that shot every day of my life now.
About insurance be very careful with your private health insurance. In the US injuries you recieve in an auto accident to name just one is considered pre-existing thus they can cancel you with no warning and then you are unable to get private health insurance. Supposedly if your doctor finds you disabled your supposed to be able to get onto Medical Assistance based upon that disability. I tried this but got turned down because a nerve injury is not considered being disabled anymore. Try this it might work.
Another avenue is the auto insurance try to get information as to whether the car that hit you has uninsured/underinsured auto benefits. If it does file a claim for those benefits. Another option is life insurance. Some policies have a clause if you are permanately disabled they will pay the policy off.
Another avenue call up your state representatives. Explain your story and the fact of how tiny your window is for treatment for Jason. Ask if they can help. If you are in an election year they will probably help for the publicity.
Somebody else gave me this idea that I have not used but it was a good one I thought. Take a sign and go sit on the front of your capital steps with a begging bowl. It is sad we live in the richest country in the world but yet cannot get basic care.
Another idea call up Rosie O'Donnel's show and the Oprah Winfrey show. Ask to talk to a producer if they won't put you through ask for the mailroom. Explain your story to them and ask if they know someone in the building who can help you. Trust me those mailroom people know everybody in their building. It is worth a shot because those two ladies our the biggest humanitarians. Rosie is in Florida this week at Disney call all the Disney hotels and have her paged it might work.
Last result call up foreign doctors and governments if you can get it paid for I have a link for free international flights for medical care. This is my opinion but you get better care and results in Europe anyways. All surgeries came from there and most of them get paid a salary unlike our greedy American doctors.
If anybody reads that and feels like attacking me think of this. If Jason does not get the money for this surgery ASAP. He will be another person on this board who got left by American doctors for the rest of his life with a disability for the sake of money. To me that is just morally wrong and makes me lose confidence in this country.
I am so sorry that that stupid doctor got your hopes so high and then threw you against the rocks. My heart goes out to you both. I will keep you in my prayers. You have my e-mail address write me if you would like me to help you call some of these people. I have no problem begging. To be blunt I did it for eighteen months trying to see a specialist before my window of opportunity was gone. I think it is sad we have to beg but if it works then it was worth it.
God bless you both.
About insurance be very careful with your private health insurance. In the US injuries you recieve in an auto accident to name just one is considered pre-existing thus they can cancel you with no warning and then you are unable to get private health insurance. Supposedly if your doctor finds you disabled your supposed to be able to get onto Medical Assistance based upon that disability. I tried this but got turned down because a nerve injury is not considered being disabled anymore. Try this it might work.
Another avenue is the auto insurance try to get information as to whether the car that hit you has uninsured/underinsured auto benefits. If it does file a claim for those benefits. Another option is life insurance. Some policies have a clause if you are permanately disabled they will pay the policy off.
Another avenue call up your state representatives. Explain your story and the fact of how tiny your window is for treatment for Jason. Ask if they can help. If you are in an election year they will probably help for the publicity.
Somebody else gave me this idea that I have not used but it was a good one I thought. Take a sign and go sit on the front of your capital steps with a begging bowl. It is sad we live in the richest country in the world but yet cannot get basic care.
Another idea call up Rosie O'Donnel's show and the Oprah Winfrey show. Ask to talk to a producer if they won't put you through ask for the mailroom. Explain your story to them and ask if they know someone in the building who can help you. Trust me those mailroom people know everybody in their building. It is worth a shot because those two ladies our the biggest humanitarians. Rosie is in Florida this week at Disney call all the Disney hotels and have her paged it might work.
Last result call up foreign doctors and governments if you can get it paid for I have a link for free international flights for medical care. This is my opinion but you get better care and results in Europe anyways. All surgeries came from there and most of them get paid a salary unlike our greedy American doctors.
If anybody reads that and feels like attacking me think of this. If Jason does not get the money for this surgery ASAP. He will be another person on this board who got left by American doctors for the rest of his life with a disability for the sake of money. To me that is just morally wrong and makes me lose confidence in this country.
I am so sorry that that stupid doctor got your hopes so high and then threw you against the rocks. My heart goes out to you both. I will keep you in my prayers. You have my e-mail address write me if you would like me to help you call some of these people. I have no problem begging. To be blunt I did it for eighteen months trying to see a specialist before my window of opportunity was gone. I think it is sad we have to beg but if it works then it was worth it.
God bless you both.
Re: Can't afford surgery--any suggestions
Amy what about State insurance??? If he could get SSI wouldn't he be covered in all states? I don't know how all this stuff works either. Could you relocate to Houston? Anyone out there who might put you up and give you an address to work with? If he lived there the Medicaid should pay???? I wish I knew more. We are always in insurance trouble too. Maybe you can do an appeal to your insurance co...Threaten to sue....(my friend had to do that to her insurance co when she had cancer-they finally paid up)Why should they care where he has the surgery if you're paying for the traveling expenses.
I wish I was more help...check out all the other ideas too. I think it is a good idea to hit up the auto insurance.
Good luck and I will be praying a window opens for you.
Love,
T.
I wish I was more help...check out all the other ideas too. I think it is a good idea to hit up the auto insurance.
Good luck and I will be praying a window opens for you.
Love,
T.
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Nancy (Eric's Mom)
- Posts: 90
- Joined: Mon Nov 05, 2001 10:06 am
Re: Can't afford surgery--any suggestions
Dear Jason & Amy,
Do NOT give up. We're in Connecticut. We were able to get our insurance company (Connecticare) which is not national to pay for Eric's surgery in New Orleans even though we have a hospital here in Connecticut that does brachial plexus repair. We were able to do it with a very strong referral letter from Eric's primary care doctor as to the seriousness of this injury and how surgery with an experienced team was so critical to Eric's future, etc., etc. Also, I talked to our state's Office of the Attorney General. They gave me a form to fax to the insurance company giving the Attorney General's office permission to get involved and be privvy to all information and decisions, etc. that the insurance company was making on Eric's behalf. That REALLY helped I think. The insurance co. was very nervous as to why attorney general's office was involved. Tessie is absolutely right - the insurance company is obligated to pay - why does it matter WHO they're paying? We did have to pay our own expenses for the travel to New Orleans of course. And, the hospital in New Orleans did accept our Connecticut-based insurance no problem. Thanks to a very special lady who I met on the UBPN board before "Trauma" was separated from "Obstetrical" named TINA "Nicole's Mom" I learned all this. I also have copies of 3 different levels of appeal letters to insurance company that she used to fight her battle. Please let me know via the board or email if you'd like me to send them to you (along with the wording of the form from attorney general's office). Hang in there and do not give up. P.S. We didn't have success with the nerve block either. Eric decided that the results of the shot weren't worth the risk and expense of going through it on a regular basis. Best thing we've found was biofeedback to learn relaxation techniques and also keeping very busy (both mind and body). Good luck.
Do NOT give up. We're in Connecticut. We were able to get our insurance company (Connecticare) which is not national to pay for Eric's surgery in New Orleans even though we have a hospital here in Connecticut that does brachial plexus repair. We were able to do it with a very strong referral letter from Eric's primary care doctor as to the seriousness of this injury and how surgery with an experienced team was so critical to Eric's future, etc., etc. Also, I talked to our state's Office of the Attorney General. They gave me a form to fax to the insurance company giving the Attorney General's office permission to get involved and be privvy to all information and decisions, etc. that the insurance company was making on Eric's behalf. That REALLY helped I think. The insurance co. was very nervous as to why attorney general's office was involved. Tessie is absolutely right - the insurance company is obligated to pay - why does it matter WHO they're paying? We did have to pay our own expenses for the travel to New Orleans of course. And, the hospital in New Orleans did accept our Connecticut-based insurance no problem. Thanks to a very special lady who I met on the UBPN board before "Trauma" was separated from "Obstetrical" named TINA "Nicole's Mom" I learned all this. I also have copies of 3 different levels of appeal letters to insurance company that she used to fight her battle. Please let me know via the board or email if you'd like me to send them to you (along with the wording of the form from attorney general's office). Hang in there and do not give up. P.S. We didn't have success with the nerve block either. Eric decided that the results of the shot weren't worth the risk and expense of going through it on a regular basis. Best thing we've found was biofeedback to learn relaxation techniques and also keeping very busy (both mind and body). Good luck.
Re: Can't afford surgery--any suggestions
You know what? I think it's time you talk to a personal injury attorney. Usually consultations are free. I still don'to know what state you live in - but do tell us because maybe someone will know a good attorney in your area.
I will pray that you are able to get this surgery! Some things are just not right!
-francine
I will pray that you are able to get this surgery! Some things are just not right!
-francine
Re: Can't afford surgery--any suggestions
Hi Jason and Amy,
I'm distressed to hear your news because your window of time is short and your need to have this surgery as soon as possible. Will your insurance cover the surgery if it is done in your state of Arizona? Maybe you can check with the Mayo Clinic there in Phoenix and see if any of the docs from the Mayo in MN come to do surgery there. There are bpi specialists at that Mayo.
Please keep us all informed and we'll keep thinking of the options.
Nancy
I'm distressed to hear your news because your window of time is short and your need to have this surgery as soon as possible. Will your insurance cover the surgery if it is done in your state of Arizona? Maybe you can check with the Mayo Clinic there in Phoenix and see if any of the docs from the Mayo in MN come to do surgery there. There are bpi specialists at that Mayo.
Please keep us all informed and we'll keep thinking of the options.
Nancy
Re: Can't afford surgery--any suggestions
Jason and Amy,
I am really sorry to hear of your experience with Brenda. Have you tried to contact Dr. Nath directly to discuss?
In any case, you know that you have a very large group of families behind you in Arizona, maybe the support group could do something to help?
Let me know.
The advice above is good: don't give up.
Bridget
I am really sorry to hear of your experience with Brenda. Have you tried to contact Dr. Nath directly to discuss?
In any case, you know that you have a very large group of families behind you in Arizona, maybe the support group could do something to help?
Let me know.
The advice above is good: don't give up.
Bridget
Re: Can't afford surgery--any suggestions
Don't bother with Mayo Clinic I tried to get in and they require payment in full before you ever get to see a BPI specialist. For just an initial visit they wan't $12,000! Time is valuable here so I don't want you to waiste your time. Just like I do not want Justin to have to stay the way he is. I have been praying for you both and I hope something works...