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Post by andrew on Mar 2, 2014 5:44:27 GMT -7
My name is Andrew, and I'm 44 years old and a 4 month LAK amputee. I knew this day would come since I was 16 years old when I was involved in a terrible accident that maimed my left leg. To my fortune SUNY upstate in Syracuse has a fantastic bunch of orthopedic doctors and they saved my life and my leg. I was told I would get 10 years at best on my leg, well I milked it to 28 years.
I've been struggling a lot with phantom pains, and my doctors sent me to a pain doctor who put me on Fentanyl 50mg and Cymbalta 60mg. My body accepted the medication well enough for about 3 months and then I started getting some MAJOR side effects that incapacitated me. I took myself off them not thinking anything out of the normal would happen because I hate taking medicine. Wrong thing to do. My doctor did not warn me about Cymbalta withdrawls, and I thought I was going to die. I called my doctor about it, yelled at them for not telling me, and they offered to put me on Prozac, which I refused. I am currently self detoxing myself off the Cymbalta via a wonderful write up explaining a homeopathic process of electrolytes, and serious intake of anti-oxidants. It's working great so far!
I am currently using a loaner C-Leg from The Hanger Clinic in Greenville, NC which is run by the best damn group of people.
I am fighting to get my own leg with Blue Cross Blue Shield. The unfortunate part is, I want to run and ride bikes with my wife and kids (things I haven't done since I was 16). My insurance company laughed at me when I told them, which anger me. So I am on a mission to figure this out my self. It's over whelming. Prosthetics are soo expensive, WHY!? Insurance companies preach wellness and healthy life styles, but turn their backs on amputees when they want to achieve just that.
I would really like to get something similar to this loaned C-leg (computerized), but in the same token have it be able to allow me the activities I crave. I actually got Ottobock to come down $40,000 on their X3, which leaves me with a mere $80,000 and change to figure out.. Does anyone have any experience with other high activity prosthetics that I may look into?
I look forward to being apart of this family, and being as helpful as I can to everyone through sharing my experiences and findings. Thank you for having me.
-Andrew Rocky Mount, North Carolina
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Post by ann- on Mar 4, 2014 2:24:19 GMT -7
Hi Andrew, Welcome to our forum here.
Sorry to hear about your accident and how it led to you losing your left leg. Sounds like you have had a pretty difficult time and that amputation surgery was something you did your utmost to avoid, twenty eight years when they only gave you ten with your leg, sounds pretty good going.
Firstly have got to say that I am not an above knee amp (I am sure you will get replies from people on here who are) and live in the UK so don't have to directly pay for my prosthetics with health insurance etc., so am in a slightly different position to you and may talk from a different perspective but have been an amputee for many years now and met a lot of other amputees along the way and really wanted to let you know that four months is really early days for you and that even without high tech prosthetics most single above knee amps can lead quite active lives.
I think the frustration you share about the cost of prosthetics to allow you to do the activities you crave, are something that many of us also get frustrated about. Generally, I think it is more difficult for new amputees today because of our awareness through the media of what could be possible with x, y or z technology, which as you are already finding come at a cost, so not everyone has access to things that might make things better or easier for them. Personally, I have found, that this kind of levels out somewhere along the line, though it doesn't stop us striving for any new technology that will make our lives active as we can be. To be honest, where I am here in the UK, not many single above knee amps even have C-legs via our NHS system, it isn't common place, but in the same vein many still manage to be very active and lead a healthy lifestyle.
Again, four months is very early days for you, so at the moment your stump will be going through a lot of changes and going on my own experiences, I know socket fit is the key thing, socket comfort is paramount because if you have skin breakdown, infections, etc., you're not going to be able to wear it anyway. So if you have achieved socket comfort that is good and that is probably at the moment your priority, although I can also understand your eagerness to get back to things you want to do. New sockets can of course nowadays be transferred to different setups, but if funds are limited also bear in mind that you have many years of using prosthetics ahead of you. Something that will help you and make things easier, whatever type of prosthesis you wear or even if you don't wear, the fitter you can get your body the better, so basic physiotherapy, walking therapy and just trying to build your fitness will help enormously.
Do wish you lots of luck on this journey and really do understand your frustrations with how the costs can seem to limit the activities that you want so much to do.
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Post by andrew on Mar 5, 2014 6:59:20 GMT -7
Thank you Ann for your response. I know just about everyone probably has had very similar issues and frustrations, and in a very twisted way I'm almost glad to hear it, because it lets me know I'm not alone or even crazy for that matter. I spoke with my prostetisist (no way I could say that word drunk.. whew) and I am going in for a recast today. My limb has shrunk 28 mils (5- #5 socks + a #3 sock) over the course of the last few months. If that makes any sense. Upon evaluation they said I had what they humorously termed bell clanger syndrome, where my limb rattled around in the prostetic like a bell clanger. I currently use a silicone gel liner with a velcro suspension. I would be curious to hear from everyone in what they use for liner/suspension and the type of activity. I am just learning all of this and I'm a very data driven and analytical person (force of habit through my job). I am thirsty to learn, and already driving my prostetisist (whew..there's that word again) crazy with questions.
On another note I have spoken again with my insurance company, and a young lady to whom I will keep unanonymous told me in very hushed tones that they have issued higher end bionic limbs to their members that demonstrated medical nessecity. If your familiar with the animated movie "The Incredibles" The conversation I had with her was much like the one in the movie with the little old lady.
..."and I'm not going to tell you to speak to your physician, and i'm not going to tell you to get a letter, and..."
Needless to say, just like the movie... I was scrambling with pen and paper.
All said and done, if by some miracle I am able to get a good suitable knee to fit my lifestyle, I will definitely share with everyone what I did, and post results so we all can be smarter in striving for the better.
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SteveInMd
New Member
R. BKA Aug 2013. pin-lock prosthesis.
Posts: 24
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Post by SteveInMd on Mar 7, 2014 14:09:59 GMT -7
On another note I have spoken again with my insurance company, and a young lady to whom I will keep unanonymous told me in very hushed tones that they have issued higher end bionic limbs to their members that demonstrated medical nessecity. If your familiar with the animated movie "The Incredibles" The conversation I had with her was much like the one in the movie with the little old lady. ..."and I'm not going to tell you to speak to your physician, and i'm not going to tell you to get a letter, and..." Hey, Andrew, welcome. It sounds as though your problem is primarily one of getting your health insurance to be reasonable with you. Try to look at this from their perspective. If they paid for any kind of "covered" treatment that any patient wished for, they'd go bankrupt. They have to engage in rational cost control, there is no business alternative for them. In the US, the major insurer for prosthetic services is Medicare. Private insurers tend to model their payment policies after what Medicare does. Medicare will, I believe, pay for C-legs without qualm, but only if specific criteria are met. So, it's likely to be the same criteria for your insurer. You can almost certainly read what the Medicare criteria are for c-legs for AKA's somewhere online. Google is your friend. When you find those Medicare criteria, you will surely find C-legs can only be given to patients who ALREADY have a high activity level (called K-level). Nobody pays for stuff like that to enable hoped-for activity levels (nor should they, really, because taxpayer dollars should be managed carefully). And this has to be documented by the physician who referred you for the service, in their clinical notes. Fortunately for you, you're already on a borrowed leg, so you can simply inform your physician that you're now jogging, bicycling, hiking in the forest, or whatever you're now doing so well, and ask him to note this in the record. You should really have a face-to-face appointment so the doctor can examine your stump as well. Then you ask him to refer you back to your prosthetist for the leg. With that done, your prosthetist should then be able to fight the battles with the insurer. See, for example: www.disabilitytodaynetwork.com/sites/default/files/imce/10102017.2_c-legreimbursementbrochure_low.pdfI don't know, but you might find you have to be post-op a year or something to qualify for a high-end prosthesis like this. Well, the documentation of having been doing so well on the borrowed leg should serve you well, even if you have to downgrade a level for some months. Insurance has an obligation to cover things, within guidelines, so there's no reason you should have to dish out thousands of dollars on top of insurance costs, as long as you're willing to jump through some hoops for your insurer. I hope this helps some. I have some limited medical billing experience outside of prosthetics, so this isn't just from a random guy. Good luck. Steve
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Post by andrew on Mar 8, 2014 16:02:56 GMT -7
Thank your for your feedback Steve. I completely understand your view of insurance costs, and I have come to terms if I should get prosthetic that I didn't hope for. I'm sure most of us learned this in our younger years around Christmas gifts and birthdays. I will continue to strive for what I am looking for, all I want is the freedom to do what I want, when I want, and hopefully break down some barriers for others as well.
I have spoken with my doctor face to face and he did review my evaluation with me, He saw the C-leg, and I told him what I was looking for and why. I he felt everything was justified, and I now have my letter and am awaiting to hear word from my prosthetisist office as they compile the document package.
Again I really appreciate everyone's input thus far, and I will keep you posted of my outcome.
PS> Your not just some random guy!
Thanks, Andrew
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Post by snarfler on Mar 19, 2014 3:02:15 GMT -7
Hi Andrew, All you need from your doctor is a thing called, "Letter of Medical Necessity". It pops the cap on any limitations your insurance company may have. I'm not an AK so I can't really appreciate a computer driven knee unit. I remember when the C Leg first hit the market. It cost just under $60,000. About the same as a 550 HP convertible Corvette. For $80,000 you can hire four large Samoans to carry you around on one of those thrones. I have to wonder if they're really worth the expense. Are you enjoying the loner unit? As for drugs, if you must take them, I think you may benefit from Lyrica.
Please feel welcome to our group. You'll find your fellow amputees to be a priceless source of information. There are places here for every purpose and if not Allen will create one for you. If I can offer any assistance just ask. I'm not the smartest man on the planet but I've met him and frankly I disagree with his theory.
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