I came here to exchange info about CCSVI (chronic cerebrospinal venous insufficiency) and I am shockedvthat it's not even mentioned. Not even news about the clinical trials or new pinned studies....Nothing?!

This is a shame.

My daughter benefited so much. She s 6 months post venoplasty and symptom free ( she had 12 symptoms) and her recent MRI showed no progression and all of her lesions are half theirboriginal size or gone.

The YouTube "CCSVI BEFORE AND AFTERS" DO NOT LIE!

So why no mention?

Hi
there are a number of threads on CCSVI if you use the general search function
at the top of each page, or use "search this forum"

We discuss CCSVI all the time.

I just did a search with the search function, and got 92 results.

Two blogs written by PPMSers are about CCSVI also I "know" both from this and another forum. Both have had procedure. Both are on CCSVI Alliance board. You may be interested in their blogs:

Wheelchair Kamikaze (my fav)
Enjoying the Ride

Both are great.

I agree we discuss it all the time. I myself am not completely sold that this is a "cure" for MS, and desperatly want more information from folks that go thru it. I want to see them at 3 months, 6 months, and 12 months past this procedure. I have seen many youtube videos of folks that leap off the procedure table and dance down the hall way, and then...they disappear! I asked several why they didnt post a follow up video and they said it was because they had a relapse or ended up having the procedure re-done and were afraid to scare off those who were signing up to have it done. I also ran into a few bullies on FaceBook that were extremely upset with me when I stated what I just wrote. My inbox was flooded with some very mean statements.

Please Dear God I pray this is an actual cure for this disease! I truly, dearly and deeply want this to be so. I just want more info. Do you have videos of your daughter at 3 months? 6 months? 12 months out? Did she need to have it redone? Did she have any relapses past the surgery? How long did it take to feel better? I mean past the euphoria of relief.

Another thing we discussed was this is a vascular issue that may or may not have triggered a neuro disease. So, our neuro's are going to be useless in trying to help us figure this out. We go to our neuro's and they poo poo this procedure and tell us its all hokum and piont out how many patients they know with almost completely blocked juglars that never get MS, and never get backwash. Never get any sx of MS. Its a puzzle.

Can you bring your daughter's story here? Can you tell us about her experience? Her progression? Her healing? Did she have it done in the US or outside of the US? What was the procedure? did she just call a vascular guy and say help me? or did she get help in finding the right vascular guys? I hope you will bring more info here if you feel there is a lack of it.

I, too, hope it's the cure we've all been waiting for. But, just as everyone's MS is different I don't see how there can be just a blanket "cure" that will benefit everyone. Those who try this procedure and have good results....I'm happy for. I hope the results last forever. There are those that have had to have multiple procedures done. And some who have slipped back to their pre-CCSVI condition.

I'm not just waiting for someone else to take the risk and have the procedure done. I'm waiting for those who have had the procedure done and posted of their remarkable results immediately following to post follow-ups showing continued improvement OR showing some backsliding. I'm not waiting to say "I told you so" because I really, really do hope this is the "thing" we've been waiting for.

As to why those people lashed out at you, Dej.........like Barb said they probably have a lot of pent up frustration and anger. MS is an aggravating disease to have. It teases you one day with feeling pretty good and then whamo....the next day you don't have the energy to sit up.

To those that this procedure has helped.....more power to you. To those waiting for more proof......I totally understand where you're coming from.

You sure didn't look very far, did you?

We have 3 members here and another friend of mine, who have had the procedure and talk highly of it. It is helpful to some, but certainly not a cure.

I'm still one of the waiters, but I wouldn't hesitate to have this procedure, if I thought it would help me. So far I've heard 3 different result stories..1. It helps a bunch - 2. It helps some - 3. I didn't work, I'll have t do it again.

What I haven't heard...yet... is, I'M CURED.

Your dear daughter's amazing story could be the one that convinces me to get tested, so please stay with us and keep us informed and thank you..

I apologize for not looking very far. my mistake.

As for the story it's pretty remarkable. But she was diagnosed such a short time. in fact she only had symptoms a short time.

My name is Cat, short for Catherine. my daughter is Megan. she was 35 last summer and all summer she seemed to be stricken with severe fatigue. not a little tried, severe fatigue. My daughter is pretty tough, I mean not tough tough but strong. She was in the Army for 5 years and served in the middle east back when we weren't at war there. She works full time and is raising a very active 12 year old son.

Now back to her symptoms, headache, sometime bad, some numbness, but fleeting, electrical sensations down both arms, impaired balance and gait was clumsy at times. She had some vision impairment but was thinking that it was age. she complained to me that she fell in the shower and then about a week later she complained of the fatigue being unrelenting. She told me that she felt depressed. ( I thought it was because she was now single for a long time)!

Then she mentioned the shock like sensations and I told he that this could be serious and that she should see a Dr. She complained that she just had a gynecologist. I told her that it was about time that she get a PCP.
So she found one and was seen promptly. He was great. He ordered an MRI and gave her a neuro consult. The neurologist saw her and the MRI AND and wanted an LP done. He told her they were ruling out MS that she had a couple of lesions on her brain.

While she waited for that Appt. She got a sudden onset of complete facial paralysis. And that was scary! Luckily it only lasted a few hours and started to abate on it's own. They did give her steroids but the facial weakness had already started to leave.

The next week was the LP and it was positive for Oligoclonal bodies. The next Appt they told her she had MS and " what drug do you want?) referring to the DMDs.

She asked me to help her choose after all I am her mother the RN.

So I went on the Internet. And I was shocked at the drug sponsored websites and the freebies they gave her....mugs, backpacks,pens etc etc.
That's when I found all the research and info onCCSVI. Particularly the statement of Dr Zamboni that the earlier the treatment the better the outcome.
I knew venous angioplasty was pretty darn safe. I had been a critical care RN.
So I was hunting for a treatment center. We live in FL but I am from NY, so we were thinking Albany. But then I saw that you should try to get treated close to home. So I called all the hospital in central Florida
Most had not heard of CCSVI. But the nurse at Shand's Hospital at university of FL at Gainesville knew about it. they had treated a few. Dr Caridi the Interventional Radilogy chief was treating people. He had 17 years of experience with angioplasty and venoplasty. he knew about Zamboni.

So in Sept just 33 days after her MS diagnosis Megan got her venoplasty.
SHE HAD A DOUBLE CANDYWRAPPER TWIST OF HER AZYGOS WITH VIRTUALLY NO FLOW. No wonder she seemed to have unrelenting symptoms, no wonder she was getting sicker and sicker. she also had a partial occlusion of her left int jugular vein. Which was the opposite side from her paralysis. could sweeping on her over taxed RIjv cause pressure on her facial nerve? Seemed logical to me.

The incredible part was just post op.....she went from being an ice cube, always complaining of being cold ( hands and feet) to being flooded with warmth. Her vision improved that day ( it's now better than 20/20) and her headache left.

She got nauseatEd from the pain medicine but she said she otherwise felt great. Over the next few days all of her symptoms left. But she had some new ones, she seemed to have trouble spitting out the correct words at times and she had numbness of her anterior thighs. Pre op she had numbness of a much larger area and trouble with her memory. Both of these started to improve.

The expressive aphasia abated over 3 months. The numbers left too.

Her only symptom left is occasional pinkie numbness upon arising. This is more of an annoyance but it's e only residual reminder. Hr fatigue left, and every other symptoms, balance, gait, etc etc.

Now is it a cure? No. But shoot, it's darn close. Her MRIs will tell. SHe is due to have one in July. I year from her last ones.

she is not on any DMD. she takes a baby aspirin and vit d, she works out at the gym 3 x week and eats a healthy diet ...... Dr John Cooke has a good diet for endovascualr health he wrote the book the cardiovascular cure.

My advice. Find out if you have blockages. Then make your decision.

Blockages cause you to have lower than normal brain oxygen and glucose, this in turn can damage the brain tissue over time and with increased iron deposits well.......to me it was a no brained.

My best to all of you that have suffered the insults of this terrible condition.

At least now you have hope.

Thanks for the ear.

A very grateful mom.

hi cat,

welcome to NT. my name is Judy. i've been dx'd with MS since '03 and take copaxone.

it's funny but i'm an RN too. NICU 35 yrs. i had to resign 6 yrs ago. i also was born in Brooklyn and lived on LI for many yrs.

i went to school at Jackson Memorial in Miami. i ended up in Denver, CO and just moved back to FL to retire with friends.

your daughter's story is very interesting. i hope she cont's to do well.
nice meeting you.

Here is a bit of negative feedback about CCSVI......

http://www.thisisms.com/ftopic-12342...erasc-240.html