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I have been diagnosed as Primary Progressive MS by a neurologist.

I started seeking CCSVI treatments in 2010 when it was considered an "underground" procedure because there was a lack of convincing case studies.

In retrospect, I now know that there were EIGHT different things wrong with my neck. But it was a long time before each of these particular problems were discovered; I was pushing the frontiers of practical medical techniques and expertise and had to seek out various specialists. I have had 16 procedures done; 10 of which were doomed to failure because of a then unknown problem. I had large bone spurs on both sides of my C1 atlas vertebrae which were compressing the internal jugular veins.

It was only after these spurs were removed [in two separate surgeries] were any further attempts to open my IJV even feasible. But because of healing time involved, this stage took a year.

7 of the 8 problems are now repaired; only one is left to correct.

My latest procedure was done at the University of Chicago Medical by Dr. Lee. It was a heroic 8 hour procedure but he was able to implant an 7 mm by 40 mm stent where the stenosis used to be in the right IJV.
Dr. Lee "saved" this vein as it was almost completely occluded [closed].

Post op testing [CT scans and ultrasound] proves that the stent is patent, and blood is flowing nicely.

The remaining problem is on the left IJV and its a major problem in that the stenosis just isn't high up on the IJV but extends through the skull base to the vascular bulb [inside the skull].

There was one attempt made to balloon this stenosis open and it was partially opened. But even with this limited success, there was a dramatic improvement in my symptoms. My sky high blood pressure dropped 60 points, the 24 /7 tinnitus vanished, the terrible swelling in my left foot disappeared in about 3 days, and most importantly my walking started to improve.

Unfortunately the left IJV has completely occulled; on a CT scan it simply vanishes indicating absolutely no blood flow at that region. Dr. Lee stated that it would be very difficult if not impossible to balloon it open.
Even if it could be opened, because of where the stenosis in located a flexible 5 mm stent would be the best that could be used.

I have found a 1998 case study very similiar to my situation where a sigmoid sinus to internal jugular vein bypass was used to get around an untreatable stenosis.

The main problem now is finding someone who can do this procedure locally or I will have to go to Arizona Barrow neurological institute [where the case study was done].

My point is that primary progressive MS can be very difficult to diagnose and treat. My MS was caused by a bad ladder accident which really messed up my neck and veins.

With the advantage of hindsight I would recommend the following:

first stage of diagnostic testing would be having an ultrasound done PROVIDED the technician knows about CCSVI and what to look for and what exactly the results indicate. A major problem with ultrasound is that the waves cannot penetrate bones.

second a MRI of the brain to indicate any vascular problems [blockages, internal bleeding, lesions, etc.]

third a MRV to map out any formation of collateral veins which might help locate difficult to locate high placed stenosis

OR a CAT scan can replace the above two tests if again the radiologist knows what to look for. The 3D version of a CAT scan can be very revealing.

Once some idea of where the stenosis are located, an experienced Interventional Radiologist can balloon the problem areas. I strongly recommend a doctor who uses IVUS imaging.

If a ballooning procedure is successful in opening the stenosis, great; but if it re-closes the a stent must be seriously considered. I was very leery of having stent put in because its a non-reversible step. But Dr. Lee pointed out that in my case, inspite of repeated attempts to just balloon open the stenosis, it kept collapsing and at this point the vein was 98% closed. I had nothing more to lose by trying a stent.

Summary. You need first imaging to locate the stenosis and first rate experienced doctors to treat them.

Donnchadh

Dear heaven! Man, that must have been one serious accident! My friend who died many years ago had PPMS. One thing I remember about it was that he had had a recent accident, just before getting sick, where he had fallen off a ladder while doing some amateur roofing. I have SPMS now and I have long suspected a ladder accident I had. All these cases are anecdotes but I am becoming more suspicious.

Anyway your treatments have been very brave, and very pioneering. I would never be so courageous. Good for you, and I am so glad at the success you have had.

Merry Christmas.

I live in Holland. Diagnose PPMS february 2013.
That same year I could go to prof. Zamboni and I could take part in the great study Brave Dreams. (results in a year!)
Had a jugular operation in august 2013
The results were spectacularly positive.
Walking improved (still difficult but improved), stability returned, force in arms good like before, peeing good like before, mental en cognitive great progress. Reborn.
So yes. Do it!

Greetings:
Congratulations to both Donnchadh and Rocco. Rocco's experience reveals the advantage of prompt treatment for CCSVI which prevents damage to the nervous system and eventual progression. HOWEVER, if the venous obstruction had been due to outside pressure on the vein such as a bone spur, the angioplasty would not have succeeded. Donnchadh's experience is the perfect example and his advice to have the situation analyzed BEFORE intervention is well given. Thanks, Donnchadh, for the detailed diagnosis advice. Also, for Rocco, every effort should be made to keep the blood flowing through exercise and a healthy lifestyle. Best regards, Vesta

Thank you Vesta and congatulations to Donnchadh (beautiful ancient Keltic name?).
In my case the jugular viens showed severe malformations. The viens are substituted by viens taken from my leg. And two useless muscles that were blocking the flow were cut (I do not miss anything). Om the right side only 7 ml/min passed before the operation and after 370 ml/min. Zamboni told me it looked like the jugular viens of healthy 20 year old (I was 47).

There still is a stenosis in the azygos, which is too dangerous to operate Zamboni told me. It could explain while besides all the recovery my walking still is difficult. I return coming february to Ferrara in Italy and will ask about it. Also about my prospects. Because I do not understand the function of the azygos well enough. I know the jugulars are the viens for the downflow from the brains to the heart and that blocking is bad for the brains, but what happens when the azygos is blocked by a stenosis?
For now, thanks, everybody all the best and all possibile recovery, I am such a happy and so much a grateful man!

An update.

The throat surgeon who assisted with the two earlier procedures to remove the bone spurs has agreed to assist with the vein graft but he needs a neurosurgeon to do the difficult part dealing with the sigmoid sinus.

I have an appointment 19 February with a neurosurgeon to "pitch the idea" of this vein graft.

Hopefully I can get this procedure done!

Donnchadh

Rocco wrote:Thank you Vesta and congatulations to Donnchadh (beautiful ancient Keltic name?).
In my case the jugular viens showed severe malformations. The viens are substituted by viens taken from my leg. And two useless muscles that were blocking the flow were cut (I do not miss anything). Om the right side only 7 ml/min passed before the operation and after 370 ml/min. Zamboni told me it looked like the jugular viens of healthy 20 year old (I was 47).

There still is a stenosis in the azygos, which is too dangerous to operate Zamboni told me. It could explain while besides all the recovery my walking still is difficult. I return coming february to Ferrara in Italy and will ask about it. Also about my prospects. Because I do not understand the function of the azygos well enough. I know the jugulars are the viens for the downflow from the brains to the heart and that blocking is bad for the brains, but what happens when the azygos is blocked by a stenosis?
For now, thanks, everybody all the best and all possibile recovery, I am such a happy and so much a grateful man!

Hello Rocco: Thanks for the détails. I'm glad to see how treatments for CCSVI have evolved, e.g. vein grafts and removing muscle obstruction. I believe the Azygos vein impacts the spine which may account for the walking issue. You might ask where exactly this is located and if a brief (less than a minute) daily massage could open the flow since angioplasty might be too dangerous. You are in the right place at the right time. Congratulations again. (And keep us informed, I'll be very interested in knowing how your treatment evolves.)

Rocco wrote:Thank you Vesta and congratulations to Donnchadh (beautiful ancient Keltic name?).
In my case the jugular veins showed severe malformations. The veins are substituted by veins taken from my leg. And two useless muscles that were blocking the flow were cut (I do not miss anything). Om the right side only 7 ml/min passed before the operation and after 370 ml/min. Zamboni told me it looked like the jugular veins of healthy 20 year old (I was 47).

There still is a stenosis in the azygos, which is too dangerous to operate Zamboni told me. It could explain while besides all the recovery my walking still is difficult. I return coming february to Ferrara in Italy and will ask about it. Also about my prospects. Because I do not understand the function of the azygos well enough. I know the jugulars are the veins for the downflow from the brains to the heart and that blocking is bad for the brains, but what happens when the azygos is blocked by a stenosis?
For now, thanks, everybody all the best and all possible recovery, I am such a happy and so much a grateful man!

Would you indicate where exactly your grafted vein was used to bypass the stenosis?

I had an additional pair of valves in my azygos vein and Dr. Ferrall was able to successfully ballooned them open and they have stayed open. Had a great improvement in my bowel movements afterwards.

Donnchadh [which is indeed a Celtic surname]