This Is MS Multiple Sclerosis Community: Knowledge & Support

I've had venoplasty twice in the last year, and I've restenosed twice. I was lucky to have major improvements, but ended up back where I started. I'm at the point where I know how good I can be, and am ready to take the "stent risk". I'm in my 60's, and have moved from SPMS to PPMS, go to sleep every night wondering what will be worse tomorrow.
Wondering if anyone else feels this way?
If I take bloodthinners, and anti-coagulants, are the odds with or against me?

You're in NY, I know a good doc there in Brooklyn who is pushing the envelope on ways to break the 'waist' when ballooning. Maybe arrange a consult with him?

But there are a lot of people happy with their stents. Have your issues been low or high in the jugulars? You'd want to be more cautious if they're high.

Hi Cece;
I had my follow up last Thursday. Ultrasound and Office visit. The Dr. doesn't really want to do stents, and wants to wait for more knowledge and CCSVI discoveries. After two times, I just feel that ballooning for me is a waste of time. I believe that most of the stent problems originated from overseas procedures, where people were unable to get follow up care.
If we get ballooned, we have to worry about restenosis. If we get stented, we have to worry about clots, etc.
I think that stenting for the majority of us with MS is the only failsafe way to keep our veins open. I also believe that in order to perfect stenting, some people have to do it, to perfect the stent procedure. I also feel that at the first sign of restenosing, one needs to immediately go back and get checked. Here in the US, that's getting easier to do with the number of centers and facilities that are opening. Just imagine if Canada were doing liberations, how many breakthroughs we would be making on a daily basis.
Dr Dake had some successful procedures, that are still,Thank God, in good shape today. We know those people, and I won't mention names, because I don't want to jinx them. They are regulars here atTIMS and can identify themselves if they like.
I had my first liberation in Bulgaria, and although my veins restenosed after a month, I know how great I felt. I had the venoplasty at 6PM. At 4AM, I woke up and called my kids in the US, to tell them that I was walking without a cane, away from the wall. My legs and feet were warm. That's where I want to be again.
I would do everything all over again. I do advise people not to go overseas, because of the lack of follow up care, but I'm happy I did. I now know that MS can be addressed, but only if you try.
My Dr doesn't disagree with Dr S at all, but "time, to me, is of the essence."
I also had stenosis in both, upper and lower jugulars.
I also believe that if I don't try everything in my power to be better, than I only become closer to being a burden on my wife and children.
By the way, Cece, you are really...The Best!! You have a love for everyone that all can see, and are a blessing to all of us at TIMS. I consider myself lucky to count you as a friend. My wish for you is that you are successful and forever-lasting on your liberation procedure!!

thanks burg, I appreciate that.

Y'know, if you've had two procedures and what resulted was elastic recoil but very importantly not clotting, that might be an indication that you are not particularly a clotter?

I hope you get it. You're also in a different situation from some, who have ended up with a stent but no improvements to show for it; you know that you're likely to have improvements, you've been there already.

This might be a matter for another thread, but I've been mentally tracking some of our 'untreatable' cases:
* missing dural sinuses
* missing jugular
* hypoplastic lumbar veins (unless progressive dilation could help this as well?)
* jugulars clotted as a result of prior treatment or stent, no further treatment possible

That last one is the only one we have even some control over, by what we choose going into this.

It's not an easy path to walk this early in the discovery process but as you say, time is of the essence. With proper follow-up care and anticoagulation, you've got that much in your favor. There are lots of positive stories and outcomes here of people with stents, I expect yours will be one of them, the odds would seem to be with you overall. You have my absolute best wishes.

Just saw this, it concerns me...do you know what sort of stenosis is in the upper? Has it been looked at with IVUS? Could it be physiological?

My recent stenosis has been lower, but I won't really know until I have a venogram.

i too have a similar story and am finally getting back into the thought process of thinking about ccsvi again. i was treated in phoenix arizona at the heart institute in a round about way, twice. im only posting this here for two reasons. one, to get it off of my chest and two, to see what others might think be good advice as well.

in mid august of this year, i was chosen to be seen my dake for an imaging study. 1 of 10 people selected. i was more than fortunate i know... his imaging showed that i had slight blockage in both jugulars where they wrap around the atlas on the top of my spine and then again, slight blockage a bit lower on one side. he also said that he felt i would be a good candidate for the procedure and to get it done if i could afford it.

a month later, i had scheduled an appointment with the azhi to have the procedure done. i went in to the hospital, was completely prepped for the procedure after 2500 dollars in imaging was done. all the way down to even being sedated and in and out of consciousness, only to be awaken by the doctor saying to me "im sorry theres nothing we can do, we dont see any blockages." first i was obviously upset. secondly, i thought, why didnt they see or not see that before they took me into the operating room... well, what was i to do besides go back to san francisco more than upset?

the following day, the doctor that had said there was nothing they could do, was now calling me and saying he wanted me to come back in the following monday because after all, they now "saw something" that being calcium in my azygos near a valve. long story short, i went in that following monday with low expectations. i told the doc that i didnt want any sedation what-so-ever so i too could watch on the angiogram what was really happening.

well, i could see the blockage in the azygos, i could see and feel both the wire and the balloon being fed into the vein and up thru my midsection. i watched and felt the balloon inflate and deflate 7 times for 20-30 seconds at a time. i felt them pull the wire out and then it began. i felt the warm tingling feeling of blood flowing to parts of my arms and hands that i hadnt ever felt before. i asked if i was being fed anything thru my i.v. they said no.. minutes later, i felt my cog fog lifting and gone with in minutes.. i layed on the recovery gurney for an hour and as soon as i stood up, i felt my balance was much improved... i was so excited to have my life back. the feeling was so intense and two hours later, my ms symptoms came rushing back.... as i was driving from where i was staying to an old friends house. as soon as i got to where i was going, i felt the most intense fatigue ever and fell asleep almost as soon as i arrived. since then, my symptoms have seemingly gotten worse and ive had my first relapse in two years just a few weeks ago.

im more than hesitant in going to any of the recently opened clinics as ive been handed my life back more or less twice now just to have it taken back again and again. poland sounds great based on the docs experience with ccsvi alone but the lack of after care scares me. staying local, as in u.s., sounds good for the after care, but the lack of experience of these doctors here scares me too... any help, thoughts, or ideas would be greatly appreciated.

also, i was recently given the option of filling someones canceled spot in poland for january 2nd... and im supposed to tell them by tomorrow whether or not im taking it... thanks for your time, sorry for being so long winded. lee.

What a story Onesickrace!

I will start from the end of your story: from what I read and from my own experience (I've been venographied in Poland in May this year)- doctors in Poland are either overly cautious or not skilled enough in treating Azygous.

As my user name can tell you - no stenosis was found in Poland.

Later, my MRV was read by another (very well known) doctor and the verdict was - severely pinched azygous, so it obviously was missed in Poland for one reason or another.

Do you have an option of going to Southern California for stenting? I hear you might even try to send a claim to your insurance (if you have PPO, I think)

Onesickrace, Dr. Siskin's group comes to mind as the one most often cited as having experience. Long waiting list, though.

NotFound is right, Poland has had extremely low percentages in comparison to other docs when it comes to finding and treating in the azygous.

its been a tough one to swallow with being on the table twice for the procedure as im sure it is for burg as well. sorry, i dont mean to highjack the thread, i just need advice.

not found, so did you get the procedure done now that they did find the pinched azygous? what have been your results if so? i was so elated in three hours total after the procedure. i can only imagine what it would be like to get my life back. thank you for the heads up on the poland/azygous situation. ive been racking my brain on what to do or where to go for quite a while and this last relapse was quite the scare thats prompted me to make a decision, as well as being on tysabri for 28 infusions and being positive for the jvc virus... i need to get something else going that hopefully wont end in the way that PML does/can! the doc ive found in socal does do stenting and i am calling tomorrow to find out more as they just recieved all of my medical files from the last 3.5 years since i was diagnosed.

cece and thank you for the heads up as well with siskin. any idea how far out the wait list might be? i was in touch with him and his team shortly after he started doing the procedure, but opted to wait until there was more experience under his belt... then phoenix called and i jumped. thanks again for the words

Not yet. In line

Possibility of re-stenosis scares the crap out of me, I can only imagine how you and Burg feel.

I am going back and forth - "I should ask for the stent! I don't want to restenose!" and "No, I should only do the ballooning! I don't want the clot growing inside the stent!"

On the lighter note - I too have been Dxed 3.5 years ago

Sorry Burg! And thank you for starting this!

In one of the posts above it mentioned feeling blood restoring flow to an area you hadn't felt it in years ... my wife said the same thing after her liberation ...

my guess (I'm not a doctor, just someone who has read a lot of CCSVI literature) is if you lost the results that quickly ... then you most likely were a victim to elastic recoil. Dr. Sclafani and many other doctors are now treating this (and aggressively working to head off) by using oversized balloons at high atmospheres.

It might be worth looking into that before going the route of stents.

If you know the feeling you got immediately after liberation, and it was beneficial ... my guess is that you're on to something, and unfortunately the vein didn't hold open (however old you are, that many years of a vein being deficient isn't going to fix in a few balloonings - though now they are seeing much higher success rates with the larger balloons and higher pressures) ...

Good luck! keep us informed. I am always interested in hearing stories that are the exact same as other people (blood flowing that you can feel ... wow moments almost immediately, azygous findings) ... all the best to you friend!

PS if any of you are in the states, I know of a doctor who has had some very good results with the azygous (unfortunately only takes US patients) ... PM me if you're interested. It's not a doctor "out there" yet ... but he's done many liberations ... and trained with several of the doctors we all know.

As soon as I read your mention of venous calcium deposits, I wanted to mention, no, more like jump and down, and let you know about vitamin K2. There a couple of different forms of vitamin K. Vitamin K1 is involved in the clotting cascade. It is the intended target to be inhibited by coumadin/warfarin. However, vitamin K2, which is also inhibited, has a different role. It activates a protein which scrubs calcium deposits out of our blood vessels. Given everything you have written, it may be the case that you have a calcium deposit interfering with the normal function of a valve. You may want to give vitamin K2, also known as menaquinone (look for MK-7), a trial run to see if it helps.

NHE

Hi Onesickrace and Notfound;
Please don't apologize...I welcome you, and we share the same problem. I spent a number of hours yesterday going thru old posts to see what other info there is on this situation. That others have this issue, makes me feel a bit more normal...if I can say that. I want to stent, but do it once, and do it right. I want to take whatever meds I need to keep those vein open.
I've been on everything. Avonex, Tysabri, Rituxin, Methotrexate...to no avail.
I had that same feeling. My thighs were cold for years, and my feet were ice.
I felt that warmth on the table...I sounded like a child..I said to the Doctors..."Wow"!! Instead of a heater warming the outside of my body, it was the opposite; inside to outside. My thighs were warm to the touch.
The one thing every nurse and Doctor asked me in Bulgaria was about my Bladder Control. That led me to believe that their experience had seen that problem checked. Well; that was the first major difference that I saw. No more 3 to 4 trips a night. No more going during the day as soon as I felt the need, to insure against accidents. I felt my muscles control immediately. Unfortunately, my bladder control was the last to go. That meant I was back where I started.
There are a few places on the west coast that have done many procedures. Experience is a must!! Don't go overseas. I did. I'm not sorry that I did, but there is almost no follow up. Between distance and Language, it's an uphill battle. But that is only my opinion.
I've also read many times that flying has no relationship to CCSVI. Who am I to argue with these top Doctors? I do know that I had a really bad headache flying home from Bulgaria. It dissipated after the flight. I never had that problem, as I used to fly all the time for work.
Regarding the larger balloons..I just want to get my veins opened again and keep them that way. I know how good I can be. I am almost certain that I will restenose again. Maybe it's my age... I don't know.

I had a treatment at Georgetown University in DC in July. They opened my azygous but said they couldn't do anything for my left IJV. I got no real benefit. I am determined to have another treatment, but I am content to wait a couple of months.

In my case, while every day is a struggle, it is a manageable struggle. In the DC/MD/VA area, there are at least five doctors doing the procedure, so treatment (and follow up) is available with a relatively short wait.

One reaons I am waiting (but also already on waiting lists) is that in the next few months, the amount of data our doctors have will be greatly expanded. They'll know more about how and where to look for problems. They'll have more info about which treatment methods were most successful. And they'll have a little more time to see which treatments held up, at least for a month or two.

I took my turn as a guinnea pig. Now I'm content to let someone else have a turn. Actually, I'm very impatient, but I'm pretending not to be.

Rosegirl; What was the problem with your IJV?