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Hi all,

I am still CIS for MS (had my first and only relapse back in May 2013), and I still have CCSVI in the back of my mind. I had my blood flow looked at by a doctor that used to perform CTOS (cutting of the scalene muscle) who confirmed that i had reduced blood flow on the right hand side (same side I have most brain lesions, and same side where I had weakeness in my body including right drop foot).

I am based in Spain, but have read that the best clinics for CCSVI are in Poland. It is hard to take the decision to operate after just one relapse, but the relapse has left some sequale (temporary exacerbations are brought on by an increase in body temperature from intense exercise, rather hot bath or long sauna). It makes me very fearful of what the next relapse could leave behind permanently.

I have made several lifestyle changes (diet, exercise, rest, vitamins and supplements) and am currently looking into starting Dr Ciceros high vitamind D protocol, as well as being into the early stages of heavy metal chelation (with Andy Cutlers frequent low dose chelation). CCSVI is always another thing that I thing would really help. I too have always had bad neck posture (head forward) and realise the the first relapse (and the active lesion on the cervical spine at the time) ocurred just after I had been carrying quite a lot of weight sepeartely on both hands, feeling a lot of tension on my neck and shoulders. Too much of a coincidence in my opinion.

Anyway I know there are few CIS MSers here who have had the procedure done, but id like to ask the rest what activities have to be avoided following the procedure? Exercise wise can one still swim and lift weights (nothing ridiculous just for muscle exercise)? What happense if you were to receive a blow to the neck? Coudl the stent or angioplasty get dislodged? Silly I know, but it worries me.

THanks all in advance!

I'd look into treatment in Italy by someone recommended by Dr. Zamboni---much closer to you, zjac, and there are a few experienced clinics in Italy. Aftercare and monitoring is essential. I'd also look into upper cervical care (NUCCA) especially if you already know you have issues.

Jeff had scans and rechecks at Stanford for the first 3 years to make sure his stents stayed in place and didn't thrombose. Now, almost six years later, his stents are endothelialized and part of the veins. He lifts weights, bikes, jogs, skis, plays the trumpet (talk about valsalva!) One thing he continues to avoid is neck massages--but that's his own thing.
Check out the Endothelial Health Program for more things you can do now, before venoplasty.
http://ccsvi.org/index.php/helping-myse ... ial-health
One thing Jeff's doctor has said to us is that the patients who kept the most physically active have done the best after venoplasty. Shear stress from cardiovascular exercise helps heal the endothelium.
HTH!
best,
cheer

Thanks cheerleader! I had been told that atleast 6 year ls back Poland was more advanced in CCSVI than Italy, even though im aware that Zamboni is Italian.

I lookes at the endolethial program and am already following several of the recommendations.

I noticed your husband had his operation done approx 2 years after hisndiagnosis. How active had his MS been till then? What about since then? Its the whole operating whilst still CIS that makes this decision hard.

Regards,
Carlos

My neurologist keeps calling my MS benign but that was always a frustrating term considering how affected I felt. CCSVI treatment worked wonders. If you consider CCSVI to be separate from MS, there are symptoms of CCSVI that are separate from MS symptoms, and so you are treating the CCSVI, not the MS, with the hopes of preventative or additional impact on the MS.

I too have always had bad neck posture (head forward) and realise the the first relapse (and the active lesion on the cervical spine at the time) ocurred just after I had been carrying quite a lot of weight sepeartely on both hands, feeling a lot of tension on my neck and shoulders. Too much of a coincidence in my opinion.

Do you think that the tightening of the neck muscles put the squeeze, literally, on blood vessels of the neck? Creating a temporary worsening of any hypoxia or effects of impaired blood flow, leading to the onset event?

Anyway I know there are few CIS MSers here who have had the procedure done, but id like to ask the rest what activities have to be avoided following the procedure?

I think it takes about 6 weeks for the veins to heal so if there is any restriction on activity, it would be short-term as far as I know. I still swim and use the weight machines at the gym, and I found I was significantly more able to tolerate any and all aerobic exercise and still can 3 years post-procedure. (I recently did a HIIT class. High Intensity Interval Training. I never could've before, even in my 20s.)

What happense if you were to receive a blow to the neck? Coudl the stent or angioplasty get dislodged?

The stent should be sized appropriately which would "wedge" it into the vein and keep it from getting dislodged. The stent also endothelizes into the vein within weeks of the procedure which means the vein grows over it and incorporates it into the vein itself making it very difficult to dislodge. The risk though is that if a stent were to dislodge, it has a direct path to the heart, and having a stent bounce around inside the heart is a rather horrific outcome that happened to one of the very first patients treated in the US back in 2009.

Stents are only used in about 3-5% of patients (although that could vary wildly based on individual doctor) so it is unlikely to get one especially on a first procedure.

Angioplasty cannot get dislodged because angioplasty is the procedure where a balloon is inserted on a catheter, inflated within the vein, and then the whole apparatus is removed and nothing is left within the vein.

You could ask in Dr. Sclafani's thread if you want a more educated actual-doctor response although he has not posted for a few months. Luring him back with questions like these seems a viable strategy.