posted
I have been diagnosed with CCSV1. Has anyone had the surgical procedure for this, or anything to fix it? I think my insurance is going to deny it, is it worth it??
Posts: 80 | From scottsdale | Registered: May 2011
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I was going to put a post out on this. Would love to hear some feedback. I believe lymetwister and MichaelTampa have done this.
jbaer - fyi, Dr. K is a big proponent of having this done. He gave a talk last Tues. night and it was a topic he spent a good deal of time on.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
I had CCSVI procedure done in March 2011. It is outpatient procedure in and out within 5 hours. Results= did not experience a miracle like some MS patients, but as my doctor said I am in the group of one third of patients who have moderate and steady improvement. And I can confirm his finding.
I am glad I had this procedure done. I still have neurolgical symptoms but they are not as violent as they used to be. It feels like I have been handling flare ups much easier.
Insurance- should not denied this procedure if ultrasound shows that you have abnormalities on the blood vessels.
I don't know where you are going to have this procedure done, but you can check out American Access Care.They have offices around US and chances that insurance will cover is good
Good luck and wish you the best.
Posts: 191 | From va | Registered: Sep 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
This is another wonderful happening alongside GcMAF. Still may need treatment to lower the toxic load and reduce microorganisms, but this is a chance to open up perfusion to the brain and make it possible, even if the "liberation treatment" has to be redone at a later date.
We have come a long way and so much more is possible, if you can think outside the box.
CCSVI is already a few years old and GcMAF has I believe been around for nearly twenty years. All very quietly.
posted
coffee71, is the 71 the amt of coffee's a week:} Im probably around there myself. lol Anyway, now that it has been a few months, would you do the surgery again? Did you have neck discomfort in the front or back of the neck, and if so, did the procedure help that? Thank you
Posts: 80 | From scottsdale | Registered: May 2011
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posted
yeh too much coffee, when I got sick (crushed with symptoms in 2008 not able to walk) I could not drink coffee, not because I was following Dr.B protocol, but because coffee caused horrid brain symptoms. Now I am back to my addiction.
I have had headaches all my life and stiff neck and shoulder for long time and it got worse few years before Lyme diagnosis.
After the procedure I had a headache for one month constantly but it did resolved. My hands were cold since I remembered having hands LOL but hours after procedure my hands were warm and I could see veins on my hands which was very unusual for me.
After the procedure I felt slight discomfort on the left side of my neck (stenosis on this side was higher, and I assume they used bigger balloon to open this vein). It lasted some time, but it is gone, pain I mean.
I go for regular 2-3 months follow up and if they find anything wrong on the ultrasound I will do procedure again in a hart beat.
I wish I had this procedure done earlier in my Lyme treatment while I was on IV abx. For some reason I believe that the abx would have better chance to work on my brain if my veins were "normal".
I approached CCSVI treatment as a tool to fix anatomical malformation in my body and not as a definite cure. I did not have high hopes so I was not disappointed when I did not experience miracle like some MS patient does.
I want to give you one more piece of info- this is break down on CCSVI treatment results- one third of patients experience a "miracle" of improving their symptoms over night, one third patients have moderate results- I am in this group and one third of patients has no changes in symptoms.
If insurance cover and/or if patient has money to pay out of pocket I strongly believe it is worth having CCSVI treatment done.
Keep me posted.
Posts: 191 | From va | Registered: Sep 2008
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posted
Thank you so much for the info coffee!
Posts: 80 | From scottsdale | Registered: May 2011
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
What are the risks? Is there a chance that something can become dislodged, travel, and cause a stroke (or something similarly bad)?
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Have heard that some lyme patients have relapsed, and the veins go back to the way they were before surgery.
If this is caused by vasculitis and people are still infected, the improvement may be temporary.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Dr. K said it may need to be repeated. For instance, the first time may last something like 6 months, then the second time may last 2 years, then the third time longer.
I'm curious to know the risks.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
From my notes from Dr K's talk, where he did endorse the CCSVI procedure:
The Earthing Pad is the best way to reduce vascular inflammation, more than any supplement.
With CCSVI, many experience a quick relapse after treatment. You must be well enough from Lyme to benefit from it. (basically, this is not the first treatment you should do, but rather deeper into the recovery process)
A bite plate can do the job of CCSVI
Also, this was the big one for me: Do not overlook tonsils and sinuses/neural therapy. CCSVI does not bring any additional progress after this.
I had my tonsils done via neural therapy and I will ask about my sinuses. It hurts, and it is not free, but it is a heck of a lot less invasive/less expensive than CCSVI.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I ended up with less EMF sensitivity (at least short-term), but more than anything, I think it restarted the war on the bugs. Before the procedure, the bugs were winning and I had no tools that were of any use (neither herbs nor abx were touching them).
I think if you're going to win the war on the bugs, you need good circulation, and if you can manage that without the procedure, great for you. But, I tried extremely low fat diet and biofilm herbs and enzymes and while they helped enormously, they had done what great work they were going to do. The doc who did the procedure explains it that there are valves pushed/held mostly closed by the junk clogging the veins, and so the valves protect the junk from being eaten away by anything that might do that (biofilm herbs or blood thinners). After the procedure, now biofilm herbs/enzymes are again doing some work.
Posts: 1927 | From se usa | Registered: Mar 2010
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