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Posted 2/21/2017 4:49 AM (GMT 0)
Hi-
So I looked through some past threads and don't think I have found anything recent(at least a couple years) on CCSVI(chronic cerebrospinal venous insufficiency).

My doc wants me to have the test done for CCSVI which insurance doesn't cover, and it's $540. I am just wavering back and forth if it's worth it. The treatment sounds a bit radical; but doc is convinced if I do have the condition, and get it treated, I will be a new person.

Anybody out there had this done recently? Any advice?

Thank you!
Posted 2/21/2017 4:52 AM (GMT 0)
Would you share what your symptoms are that led your Dr. to want to test for the CCSVI ?

I have no knowledge about it.

is that the treatment that people with MS were trying several years back? or am I way off base?
Posted 2/21/2017 4:54 AM (GMT 0)
Is this a lyme literate medical doctor that is advising you to have this?
Posted 2/21/2017 4:57 AM (GMT 0)
So,I looked it up (i'm impatient) - and it was what I was thinking - that it was a treatment for some MS patients.

It's a controversial subject...that's for sure.
Have you looked at the risks?

I have the same question as PeteZa - is this a Lyme Dr. wanting you to have this procedure?
Posted 2/21/2017 4:59 AM (GMT 0)
Yes, I believe it is the treatment MS patients were doing.

I have a lot of neck/base of head issues. Not just pain but heat, cracking, visible veins and rashes on neck. But mostly the cognitive issues were the reason. Typical Lyme cog issues: inability to retain written info, brain fog, vertigo, slurred speech, poor memory/recall, hallucinations. He says in an instant it's like the light switch is turned back on and you can think again. But I am skeptical....
Posted 2/21/2017 5:01 AM (GMT 0)
Yes! An LLMD in AZ. smile
Yeah, the risks scare me, but thought of having my brain back is so tempting. But then, I think like most Lymies, I don't do well with medical interventions. So that is my biggest concern.

Post Edited (TrialbyLyme) : 2/20/2017 10:04:04 PM (GMT-7)

Posted 2/21/2017 5:29 AM (GMT 0)
My concern is that you do this procedure and you still have those symptoms because they are from the infections not because of the narrowing of your blood vessel.

Those are Lyme and co infections .(You said it yourself - Typical Lyme cog symptoms,
Posted 2/21/2017 9:16 PM (GMT 0)
@Girlie- yeah you're right! It doesn't make sense, if it is the Lyme causing the issues. It almost seems like a Bandaid rather than a cure. I really don't know much about it so just wanted to see if anyone had good results. Or maybe the Lyme causes the veins to collapse. hmmm...
Thanks!
Posted 2/21/2017 9:35 PM (GMT 0)
Are you progressing with treatment? I'm thinking if I were you - even if I thought it was a 'fix' I would wait and see what can resolve with treatment.
Posted 2/22/2017 4:23 AM (GMT 0)
Um well that's hard to say. Had a couple derailments with SIBO and dealing with failed dental cavitation surgery so Lyme has been on the back burner. Although I do still take some herbs occasionally when I remember. I am stuck in the US, (why I went to see an LLMD here) because after my cavitation surgery I became too ill to travel to get back to Europe, and hubby. sad ) Probably more info than you needed there, lol..
Thanks for your input. I agree with you.
Posted 2/22/2017 6:10 AM (GMT 0)
Oh, yes now i remember - the cavitation surgery. How is that now? Has it improved?


That's gotta be tough - not being with the hubby!
Posted 2/23/2017 5:58 PM (GMT 0)
Oh gosh Girlie. It's kinda been a nightmare actually! shakehead
Maybe I will post an update in my original thread. A few people have emailed me privately from the forum asking about it which has been a comfort. You win some you lose some with Lyme.
Posted 2/23/2017 6:11 PM (GMT 0)

TrialbyLyme said...
Oh gosh Girlie. It's kinda been a nightmare actually! shakehead
Maybe I will post an update in my original thread. A few people have emailed me privately from the forum asking about it which has been a comfort. You win some you lose some with Lyme.

Oh, I'm so sorry to hear. Please do update us.

I'm pretty sure i was one of those who emailed you privately about it.
Posted 3/31/2017 11:41 PM (GMT 0)
What is the name if the test for CCSVI? I didn't know they could test for it.
Posted 4/1/2017 12:00 AM (GMT 0)
It would be imaging of the veins that carry blood from the CNS to the heart. They're looking for narrowing.
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