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Old 06-08-2012, 07:46 PM #3
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Dejibo Dejibo is offline
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Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
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I have personal in real life friends (not internet friends) that have had this.

2 of them have to keep repeating it. They go about once every six months to a year to "redo" it. One has insurance (dont know how they coded it) and its paid for. the other pays cash.

1 had it done with zero results. she said she feels no different than if she had not had it done.

1 had amazing recovery. its been 2 years since he went to hungary and paid almost ten thousand dollars. he said it was the best thing he ever did.

now onto the internet friends.

I have a dozen or so that had it done and need to keep repeating the proceedure about once a year to keep their results. Some have had stents put in to keep the vein open, but they keep repeating it cause the symptoms keep coming back.

I have a smaller handful that had it done and are amazed. have not had further issue, dropped their DMD and improved. some went back to work.

I was examined and it was found that both my IJ veins were clear. my Az vein was straight and strong, and it was a decision that I was not a candidate to go further. I was shocked about my IJ veins since I had so many central lines with chemo in the past.

I think if you have to keep repeating the expensive procedure then is it worth it? there are great risks involved with this. bleeding, vein rupture, death, stroke...scary stuff.

im thilled many found success and recovery, but I wish they would do more real studies with this, and not just throw a dozen folks in a room.
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