Travel Insurance

[Lesley_D]

Hi, can anyone advise about travel insurers, I have been refused by 13 companies.

Also does anyone have any information or reference for Avascualr Necrosis .... I have been diagnosed with it in my leg and am suffering so much pain.

[MaryF Administrator]

Hi sorry you are so sore, firstly here is our page of insurers, recommended through Hughes Syndrome Foundation, have you tried them all? hughes-syndrome.org/self-he...

and this is the best paper I could lay my hands to, who is managing this for you, as clearly you need expert help with it: emedicine.medscape.com/arti...

MaryF

[Tranquility1]

Hi Lesley!

Avascular Necrosis is also called osteonecrosis. There are various causes of avascular necrosis. One cause is thrombosis in hypercoaguable individuals. The small clots cause bone death.

I was told there are 6 things to do.

1) Find a great bone doctor who specializes in it. The earlier the intervention by someone who knows what they are doing, the more likely the bone death can be slowed down or stopped. For example, often when someone with AV has a hip replaced, the other hip is not far behind. Big city hospitals, like HSS (Hospital for Special Surgery) in NYC has specialists in the field.

2) Lower my cholesterol. High cholesterol plus being hypercoaguable makes one have even more problems related to the blood clots. I have genes for high cholesterol. When I am eating the standard unhealthy American diet my total cholesterol is over 300. When I was a good vegan with minimal saturated fat, my total cholesterol was 167. Right now I am a vegetarian who eats fat and my cholesterol is back to 234. Therefore, with my genes, eating vegan makes a huge difference in reducing my cholesterol. I realize diet does not impact everyone's cholesterol like mine does.

I am trying to go back to being a good vegan with little saturated fat again. Yet, it's hard to remain a good vegan (too many tasty treats and cheeses around). I am best when I pre-plan my meals and snacks. It's very time consuming to try to get one's health back. I'm doing a vegetable and fruit market run this morning.

Finding a good lipid specialist who understand the relation with clotting and fats is important. My doctor eats paleo and so does my husband. That works for them. It doesn't for me. My body sucks every last fat molecule out of any saturated fat I eat and it raises my small LDL (the worse type). So having a doctor who understands that there are different foods that impact different bodies is important if you are heavily impacted by what you eat.

3) Eat foods that promote blood thinning. I was also told to eat garlic and onions and to drink tomato juice (low salt) every day. All three are supposed to be good for thinning the blood. There was a study that found tomato juice inhibits the platelets in the blood from clumping together and forming blood clots. But with everything, it's important to speak with you doctor and listen to your body. When my gums start to bleed every time I brush my teeth, and when I slightly brush against something and it hurts as if I banged it really hard, then I know to cut down on my natural blood thinning and/or aspirins.

4) Exercise everyday. I walk. It makes a huge difference. When the bones are about to crumble, some doctors recommend keeping the weight off the leg. For example, the use of crutches. However, I will die if I cut out exercise. Without exercise, I get even more clotting, speeding up the avascular necrosis. Therefore, I take it easy with bad flare ups, but I really try to exercise through it (even if it's just walking 15 minutes on the treadmill while holding on the rails.) I'm lucky that my flare-ups have gone away in the past. Some people get a flare-up and within a few months they are having their hips replaced.

5) Strength exercises help. I lift light hand weights (7 exercises) 3 times a week. It is supposed to get the muscles working hard and the blood pumping in the area. I need to add strength training for the legs (but I don't belong to a gym at the moment). The more blood flow and oxygen to the area, the more healing will take place and the less degeneration.

6) Lay down on the bed or couch for an hour every day. Flat (no pillow). This forced lay down makes a big difference. I believe part of my problem is that there is low flow when I am sitting. I believe there is pressure and a slow down in my circulation when I sit. I can feel it. Laying down allows the blood to run smoothly and provide nourishment to areas that might have been cut off (or decreased) earlier in the day.

This trying to stop the decay is a huge undertaking. I completely feel for you with the excruciating pain. When I have a flare-up of pain, I try to remember that by sticking to the above, I get through the flare-up after a few days and the pain has always gone away for me in the past. I hope it works for you too! Hang in there!

[MaryF Administrator in reply to Tranquility1]

Thanks for the great input. MaryF

[Tranquility1]

Here is a good article on avascular necrosis:

hss.edu/onthemove/ask-the-e...

[Lesley_D]

Thank you my knee is dead now and 2/3 of my tibia also needs to be removed - I am in lots of pain there but also now in my right hip - i am on warfarin and have been for 3 years with low cholesterol - they think I have been clotting even with an Inr of 3-4

Thank you for your info

[Lesley_D]

Thank You Mary, I will look at them now, and let you know how I get on.