Monday, January 2, 2017
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www.zebrastrong.me provides "lessons learned" to make living with Ehlers Danlos Syndrome easier. Provides lists of tips and tricks, blogs with details about lessons learned and actionable suggestions to improve your daily life and long term medical management. Has a special area for raising children with Ehlers Danlos Syndrome
Fixing Vein Weakness in Ehlers Danlos
I keep telling everyone that every time I you can do little things to help your body it is 1% less you hurt or 3% less pain, etc. All those little %'s add up to a lot of feeling better. There are so many huge health issues we have to deal with but sometimes it is the small stuff that makes a difference.
So, this lesson learned? INSURANCE CAN COVER FIXING WEAK VEINS IN YOUR LEGS. It is called ENDOVENOUS ABLATION THERAPY. I was also shocked. I am always seeing ads for dermatologists and plastic surgeons that do "ugly" vein removal. They cost a fortune and don't take insurance - but wait - some do take insurance. There are criteria to be approved.
My legs get so tired by the end of the day. I feel like I am walking in quicksand. My feet barely make it off the floor to take steps. It is not my back or muscles. They are just tired. It actually causes dangerous situations because it makes me trip over things and fall. By the end of the day, the veins on the back of my knees look like a pot of worms going in every direction. The veins are bulging! Several times a year they, "blow-out". In other words the veins aren't strong enough to hold the blood that pools and they break through suddenly in a huge black and blue mark that takes months to go away. Yes, support stockings do help I figured out.
Long story, (for another blog) but I was at a plastic surgeons office when I noticed vein charts on the wall. I asked him if he did vein removal. Wow. He did. And I happened to be at a plastic surgeon that takes my insurance. I had found him on the insurance website of in-network doctors. I had been on a waiting list for 3 months at the vascular surgery department of a major hospital system waiting for the tests used to determine the need for the procedure. He said he could do it while I was there so I didn't have to make a second trip. Customer service???? Doctors office? I need to go to that kind of practice more often.
I had looked into this a few years ago since it really bothered me. That time I went through a cardiologist office. They did pressure tests (after months of waiting) but I was told my veins were fine - despite the huge black and blue marks. My GYN also does vein ablation, but not covered by insurance. I was on the waiting list at vascular surgery, and the dermatologist I go to also does it, takes my insurance, but without even asking my insurance company informed me that insurance doesn't cover that. Then they gave me a price list - and a credit card application. HMMMM????!!!!!
My plastic surgeons office used an ULTRASOUND to visualize the amount of blood that pools or if it returns. They look at the vein starting at the upper inside part of your thigh, going as far as the back of your knee. At times I just lay there, body tipped downward so the blood would have to work to get back to the heart. At other times they had me push, like giving birth, to see if the valves held closed when they should. I failed in both legs. Right worse than left, but the valves were not holding when they should.
The reason I mention the ultrasound is because when I went to the test scheduled by the cardiologist they never did an ultrasound. They put pressure cuffs on my legs and did some type of readings based on the return rate of the blood. I think my veins would have had to be completely shot to catch it during a mid-morning appointment when I had not been standing or walking all day (or say cooking dinner).
I have to wear support stockings for two weeks and despite the fact that they are hell to get on, they really do feel good (you should try them). I did get a cool tip from the instructions on the box. Use rubber gloves to put them on. The rubber grabs the stockings and make it REALLY EASY to pull them up and adjust them without digging your nails into them or your fingers being to tired. I used kitchen gloves.
The doctor says that most of his patients describe the feeling when it heals as having more "pep in your step" at the end of a day. I could use that. It has been a couple of weeks and the ablation is healing. They use lidocaine and it really doesn't hurt. They needed to go one more step beyond that for just my right leg and remove some hugely bulging veins were the valves were still not holding. That was called MICROPHLEBECTOMY. OK, that was weird feeling. They literally pull out the bad veins. Imagine the feeling of pulling a piece of rope through a small hem. The doctor said the procedure was really a mind game. He was right.
So bottom line, lesson learned, sometimes it is the little things that add up to a lot of relief. Look at different medical specialties that take different approaches to the same outcome. WORK WITH YOUR INSURANCE COMPANY. Have the doctors ask for approval even when they have seen it turned down 10 times before you. Don't just listen to doctors that say they can't do that because it isn't covered. That is what prior authorizations or exceptions are for. And just remember. This was the 4th doctor I inquired about vein removal. Never hurts to keep checking if it is important to you.
EDS presents us with complex problems that don't fit into that nice neat version of what is and is not approved. Fixing veins in your legs isn't always about beauty but also about "pep in your step" late at night and the safety of knowing you are picking up your feet as you walk and not tripping on the floor.
So, this lesson learned? INSURANCE CAN COVER FIXING WEAK VEINS IN YOUR LEGS. It is called ENDOVENOUS ABLATION THERAPY. I was also shocked. I am always seeing ads for dermatologists and plastic surgeons that do "ugly" vein removal. They cost a fortune and don't take insurance - but wait - some do take insurance. There are criteria to be approved.
My legs get so tired by the end of the day. I feel like I am walking in quicksand. My feet barely make it off the floor to take steps. It is not my back or muscles. They are just tired. It actually causes dangerous situations because it makes me trip over things and fall. By the end of the day, the veins on the back of my knees look like a pot of worms going in every direction. The veins are bulging! Several times a year they, "blow-out". In other words the veins aren't strong enough to hold the blood that pools and they break through suddenly in a huge black and blue mark that takes months to go away. Yes, support stockings do help I figured out.
Long story, (for another blog) but I was at a plastic surgeons office when I noticed vein charts on the wall. I asked him if he did vein removal. Wow. He did. And I happened to be at a plastic surgeon that takes my insurance. I had found him on the insurance website of in-network doctors. I had been on a waiting list for 3 months at the vascular surgery department of a major hospital system waiting for the tests used to determine the need for the procedure. He said he could do it while I was there so I didn't have to make a second trip. Customer service???? Doctors office? I need to go to that kind of practice more often.
I had looked into this a few years ago since it really bothered me. That time I went through a cardiologist office. They did pressure tests (after months of waiting) but I was told my veins were fine - despite the huge black and blue marks. My GYN also does vein ablation, but not covered by insurance. I was on the waiting list at vascular surgery, and the dermatologist I go to also does it, takes my insurance, but without even asking my insurance company informed me that insurance doesn't cover that. Then they gave me a price list - and a credit card application. HMMMM????!!!!!
My plastic surgeons office used an ULTRASOUND to visualize the amount of blood that pools or if it returns. They look at the vein starting at the upper inside part of your thigh, going as far as the back of your knee. At times I just lay there, body tipped downward so the blood would have to work to get back to the heart. At other times they had me push, like giving birth, to see if the valves held closed when they should. I failed in both legs. Right worse than left, but the valves were not holding when they should.
The reason I mention the ultrasound is because when I went to the test scheduled by the cardiologist they never did an ultrasound. They put pressure cuffs on my legs and did some type of readings based on the return rate of the blood. I think my veins would have had to be completely shot to catch it during a mid-morning appointment when I had not been standing or walking all day (or say cooking dinner).
I have to wear support stockings for two weeks and despite the fact that they are hell to get on, they really do feel good (you should try them). I did get a cool tip from the instructions on the box. Use rubber gloves to put them on. The rubber grabs the stockings and make it REALLY EASY to pull them up and adjust them without digging your nails into them or your fingers being to tired. I used kitchen gloves.
The doctor says that most of his patients describe the feeling when it heals as having more "pep in your step" at the end of a day. I could use that. It has been a couple of weeks and the ablation is healing. They use lidocaine and it really doesn't hurt. They needed to go one more step beyond that for just my right leg and remove some hugely bulging veins were the valves were still not holding. That was called MICROPHLEBECTOMY. OK, that was weird feeling. They literally pull out the bad veins. Imagine the feeling of pulling a piece of rope through a small hem. The doctor said the procedure was really a mind game. He was right.
So bottom line, lesson learned, sometimes it is the little things that add up to a lot of relief. Look at different medical specialties that take different approaches to the same outcome. WORK WITH YOUR INSURANCE COMPANY. Have the doctors ask for approval even when they have seen it turned down 10 times before you. Don't just listen to doctors that say they can't do that because it isn't covered. That is what prior authorizations or exceptions are for. And just remember. This was the 4th doctor I inquired about vein removal. Never hurts to keep checking if it is important to you.
EDS presents us with complex problems that don't fit into that nice neat version of what is and is not approved. Fixing veins in your legs isn't always about beauty but also about "pep in your step" late at night and the safety of knowing you are picking up your feet as you walk and not tripping on the floor.
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