CCSVI without MS diagnosis?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: CCSVI without MS diagnosis?

Postby KDGO » Fri Mar 23, 2012 4:11 am

Magoo

I'm sorry I don't get to this site as often as I used to do but in 2010 you were one who I followed closely.
It is absolutely wonderful to hear of your good news. Perhaps this is not the thread to be asking a specific
question but did you ever experience mobility issues, neuropathy, week legs etc. This is the one area
that Dr. Siskin wasn't as positive about improving.
If this is the incorrect forum to ask if you would please pm me that would be great.
Where did you see Dr. McGuckin?
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Re: CCSVI without MS diagnosis?

Postby magoo » Fri Mar 23, 2012 5:28 am

I did have balance issues, stiffness in my legs, weakness in my hands, and some neuropathy. They all improved, although they do crop up from time to time.
It's been two weeks since my last treatment with McGuckin (in Durham, NC) and I feel even more improvement this time than I did the first two times. My renal and iliac veins were stented this time and I think it has made a huge difference. I'm not advocating stents, but I did have May Thurners and Nutcracker Syndrome, which required them.
I've had MRVs and CT scans for diagnosis. The MRV was most accurate for me. McGuckin goes straight to the venogram. He talks you through the whole process. There is no right answer at this time as to the best diagnostics. Best of luck!!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Re: CCSVI without MS diagnosis?

Postby KDGO » Fri Mar 23, 2012 6:12 am

Thanks Rhonda!
I'm going next week to see Dr. Haacke. I would like to see a full analysis on my flow.
Then I need to put on my thinking cap to see if I should go back in.
I know that stents in MT are common.

Best of luck
Karen
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Re: CCSVI without MS diagnosis?

Postby magoo » Fri Mar 23, 2012 6:30 am

Karen,
Haacke is the best when it comes to flow and MRV. I think that is a really good idea. Once you see the blockages (assuming there are any) it will be easier to make a decision about treatment. I hope you find some answers!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Re: CCSVI without MS diagnosis?

Postby drsclafani » Sat Mar 24, 2012 8:31 am

Lauri04 wrote:Doppler is ok but not great for dx CCSVI. Venogram or MRI/MRV is gold standard. Doppler is very operator dependent and can't see the Azygos.


There is no evidence at all that mrv is the gold standard. doppler is great for screening of ccsvi and much cheaper. It also often shows the intraluminal pathology that is rarely seen by MRV. It also gives moderate, although underestimated size of the veins useful for interventionalists making decisions on balloon size.

But personally, i think that venography plus intravascular ultrasound is the gold standard because the combination allows simultaneous treatment, detects things that cannot be seen by other methods, and allows assessment of the renal vein, the ascending lumbar vein and the azygous vein. MRV does not.

And most assuredly yes, ccsvi does exist outside of ms

Good luck
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: CCSVI without MS diagnosis?

Postby seabea » Mon Mar 26, 2012 8:26 am

Thank you everyone! I have started the process of getting my insurance company on board and will have my testing done as soon as possible. With the severity of my migraines this weekend it has put me into superspeed to get the ball rolling. I will let you know what happens. :)
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Re: CCSVI without MS diagnosis?

Postby Cece » Mon Mar 26, 2012 8:35 am

Wishing you the best!! I have heard of migraines becoming less severe and less common after the procedure. No guarantees of course.
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Re: CCSVI without MS diagnosis?

Postby darlabrown1 » Mon Mar 26, 2012 11:54 am

Hello...just wanted to say that I've been clinically diagnosed with chronic lyme disease and my symptoms are VERY similar to yours. It's very possible that you have chronic lyme because there is NOT an accurate test for it. I've tested negative four times and was eventually diagnosed based on symptoms and history which is how the CDC says lyme should be diagnosed as they realize the tests are not always accurate.

Anyway, my lyme doctor thinks I have inflammation or a blockage in my right jugular just by pressing on it and comparing it to the left jugular. He asked me to read up on CCSVI and he wants me to be tested in Fairfax, VA. The link below names various conditions that may cause CCSVI so you can definitely have it without MS. Check it out... http://www.ccsvi.org/index.php/helping- ... tialcauses

You may also want to find an LLMD (Lyme Literate Medical Doc) who can diagnose clinically as your symptoms are spot on for chronic lyme disease. To find an LLMD closest to you...send an email with your city and state to: http://turnthecorner.org/content/select ... physicians or http://www.chroniclymedisease.com/llmd-referrals

Here is a link regarding chronic lyme: http://www.ilads.org/lyme_disease/about_lyme.html

Good luck,
Darla
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Re: CCSVI without MS diagnosis?

Postby Cece » Mon Mar 26, 2012 2:28 pm

Anyway, my lyme doctor thinks I have inflammation or a blockage in my right jugular just by pressing on it and comparing it to the left jugular.
I wonder what he's feeling. The blockages are usually low in the jugular, near where it meets the subclavian, at the base of the neck or essentially in the chest. My guess is that your doctor was pressing on the jugulars further up. He may have noticed a size difference between the two jugulars, but size differences are common among the healthy controls, with the right jugular typically the larger of the two. All that said, we've heard from people with lyme with CCSVI blockages before. A theory is that the blockages create venous congestion and through various effects on the endothelium, adhesion molecules are increased which open up the blood brain barrier, which allows the lyme bacterium to get a foothold in and go neurological.

Let us know how the testing goes, and the treatment if you choose to get it. We had a poster with Lyme previously who said that, immediately after the treatment, he got a very strong Herxheimer response.
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Re: CCSVI without MS diagnosis?

Postby seabea » Wed Mar 28, 2012 1:06 pm

My insurance company has denied my claim for the CT venogram. They want other tests done first. I'm waiting for a call from my doc to find out which tests they are asking for. They mentioned another lumbar puncture but I've already had two! It's gonna be a fight I guess.
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Re: CCSVI without MS diagnosis?

Postby Cece » Wed Mar 28, 2012 1:53 pm

When I was treated, I didn't do any of the pre-work with the insurance company. I just handed over my insurance information and the clinic checked to see if pre-authorizing was necessary. With my insurance (UHC), it wasn't necessary to pre-authorize. What surprised me was learning that I could get a procedure like this done in a different city with no hassle.

The doppler ultrasound can give enough indication to proceed with the procedure. If you go with Dr. McGuckin, does anyone know if Dr. McGuckin's office handles the insurance preauthorization?

A lumbar puncture is definitely not necessary for CCSVI testing. LOL.
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Re: CCSVI without MS diagnosis?

Postby seabea » Tue Apr 24, 2012 9:26 am

I just wanted to update that I'm having the Venogram with Dr. McGuckin in Houston, TX on May 3rd. And best of all the insurance is covering 80%!! :) Hallelujah! That is the only day he'll be back to Houston...ever...so he'll do the venogram and if he finds narrowing in the veins he'll do the angioplasty as well at the same time.

I will let you know what the results are next weekend. Thanks everyone for your inputs!

-Sealey
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Re: CCSVI without MS diagnosis?

Postby KDGO » Tue Apr 24, 2012 10:20 am

Best of luck Sealey.
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Re: CCSVI without MS diagnosis?

Postby seabea » Mon May 07, 2012 11:27 am

Update!! I had my Venogram in Houston with Dr. McGuckin last week. One jugular was 50% blocked, the other jugular was 70% blocked, my azygos vein to my heart was blocked as was the vein to one of my kidneys. He did the balloon venoplasty on all but the kidney vein. It was only blocked 30% so he left it alone. I have never felt so good! I have had absolutely no pressure in my head since the procedure. And best of all, no headaches or migraines either!! I can't say yet that I never will have them again but so far it's been night and day difference. I can sleep without pain!! I can't believe all this. I just heard of CCSVI a couple months ago and now my life has completely turned around. Thanks to everyone for your input. Life is great!!
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Re: CCSVI without MS diagnosis?

Postby tiltawhirl » Mon May 07, 2012 11:58 am

Congrats!

All the best as you recover. :)

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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