Venous Insufficiency and Multiple Sclerosis:Too Soon to Tell

sw8689 · 09-26-2010, 01:35 PM

My brother had his procedure in cab San Lucas. He noticed a huge increase in energy levels. I dont think he has had any miraculous recovery yet, at least that I know of. I believe ccsvi is a separate issue not related to ms, but is real and has serious consequences if not dealt with.

jacksonsmommy · 11-10-2010, 11:17 PM

I had my procedure May 31, 2010. I am well over the 5 month mark now and the marked improvements remain. In fact, I am still seeing small improvements.

I still have to be careful not to over do things, but my "bad" days now are still better than my "good" days before. I got my life back! I would say that I still have some side effects from years of damage, but if I didn't know about my MS, I'd probably be able to brush my mild problems off - just like I did for the 10ish years before I was diagnosed.

This is the real deal. I'm happy to answer any questions.

Judy2 · 11-11-2010, 05:34 AM

Quote:

Originally Posted by jacksonsmommy

I had my procedure May 31, 2010. I am well over the 5 month mark now and the marked improvements remain. In fact, I am still seeing small improvements.

I still have to be careful not to over do things, but my "bad" days now are still better than my "good" days before. I got my life back! I would say that I still have some side effects from years of damage, but if I didn't know about my MS, I'd probably be able to brush my mild problems off - just like I did for the 10ish years before I was diagnosed.

This is the real deal. I'm happy to answer any questions.

Thank you so much, JM, for sharing your experience with us. It does sound REALLY PROMISING!!! I'm going to take you up on your offer to answer some questions:

1. How many years have you had MS?
2. What type was it when you had the procedure
done? RR...SPMS...PPMS???
3. Did your insurance cover everything?
4. Did you have any bad side effects?
5. Did the procedure hurt? Can't stand much more pain here.
6. A big one I should have put at #3, were you walking, getting around, etc., or using a chair when you had it? If a chair, can you now walk?

I appreciate you taking the time to answer these questions for us. Being spms and in a chair, I'm ready to try just about anything as long as it does no harm. Where did you have it done?

Trust your wonderful results continue and more appear in the future. Take care......

SallyC · 11-11-2010, 10:54 AM

Yes, thank you so much JM.

I too, would appreciate your answers.

I have a friend going to NY at the end of this month for the test and procedure. I am 70 yrs old but would still do this, if it would help and do no harm. I can still stand, take a few steps to transfer but am in a scooter most of the time.

Good wishes to you..

jacksonsmommy · 11-11-2010, 09:55 PM

Quote:

Originally Posted by Judy

Thank you so much, JM, for sharing your experience with us. It does sound REALLY PROMISING!!! I'm going to take you up on your offer to answer some questions:

1. How many years have you had MS? --> Officially diagnosed January 2009, but in retrospect have had symptoms since at least 2000. Believe it was triggered when I got mono in 1997. I always said that it was like I never fully recovered from mono.
2. What type was it when you had the procedure
done? RR...SPMS...PPMS??? ---> I was RRMS but I suspect I may have been trending into SPMS....
3. Did your insurance cover everything? --> So far my insurance (CDN) has covered squat. They are still adjusting my claim. It cost my about $15,000 between travel, hospital, meds, etc.
4. Did you have any bad side effects? --> My "bad" side effects were a really sore neck for a week after (pain radiating from the stent), and a month or two of some shoulder pain. All was resolved with massage therapy and accupuncture. Compared to the improvements I got, I was more than happy to accept those side effects!
5. Did the procedure hurt? Can't stand much more pain here. ---> Yes, it did hurt, but it was nothing I couldn't breathe through. Because my stenosis was fairly close to my ear, every balloon infection felt like ear infection pain.
6. A big one I should have put at #3, were you walking, getting around, etc., or using a chair when you had it? If a chair, can you now walk? ---> I was ambulatory, but using a cane much of the time as my left knee often wouldn't support my weight. My left leg used to often drag badly as well. In heat or when I got really tired the cement block action also happened

I appreciate you taking the time to answer these questions for us. Being spms and in a chair, I'm ready to try just about anything as long as it does no harm. Where did you have it done? ---> I had my procedure at the Tokuda Hospital in Bulgaria. It's a Japanese owned private hospital.

Trust your wonderful results continue and more appear in the future. Take care......

I had 75% stenosis in my left jugular vein. Repeated balloonings (30+) wouldn't open it so I ended up with a stent. I had results on the table. It felt like someone poured warm water down my legs. Cog fog disappeared immediately, like switching on a light. Color came back to my hands and my face immediately. Fatigue lessened dramatically within a day or two. Muscle spasisity is gone. No more myclonus/jerking. Bladder urgency is pretty much gone. Have not used my cane once since the procedure!! Feeling in my fingertips (didn't realize it was gone!) came back a month after. I dream at night now - never did before. I wake up refreshed now. Almost never even need to nap since about three months after. Word recall started improving within in days and is now pretty much the same as a normal person. Rate of speech improved within a day or two. Parasthesia is gone. No more vertigo!!!!

Honestly, it's been a dream come true. I had just resigned myself to the fact that I was screwed and then this came along! I won't say I'm "cured", but I can forget that I have MS for the most part. Now it's back to annoyance stuff instead of disabled and utterly miserable like I was before. I can't even let myself use my handicapped parking placard now because I feel guilty.

I do still have to make sure I don't let myself run down though. If I over do things for a few weeks I do start getting some mild dizziness, mild fatigue and some optic neuritis. Considering that showering used often be the only thing I could do in a day, this is a 1000% improvement.

I am off ALL medications except my low dose aspirin and my vitamins. Stopped taking my copaxone a month after and weaned off my SSRI in June/July.

It's still hard to fully accept that I have been freed from my prison. Somebody pinch me!

SallyC · 11-11-2010, 10:26 PM

It sounds like the stent is the way to go, since ballooning doesnt seem to hold.

Did they use a special stint, just for veins?
Isn't the stent a bit dangerous?

Thanks so much..

jacksonsmommy · 11-11-2010, 11:51 PM

Quote:

Originally Posted by SallyC

It sounds like the stent is the way to go, since ballooning doesnt seem to hold.

Did they use a special stint, just for veins?
Isn't the stent a bit dangerous?

Thanks so much..

The stenosis in my vein was very resistant and wouldn't even fully open with the balloon fully inflated. Hence the stent. My stent is a Protege self-expanding nitonyl (sp?) one. Apparently it is very important that any stent used is self expanding. It is not a specially designed venous stent. I don't believe such an animal exists yet. From my research, the most important thing (beyond using a self expanding one) is the skill of the surgeon. They have to know how much to oversize it and and exactly where to place it. As with any medical procedure, you want someone who knows what they are doing!

My stent did fine in an MRI and doesn't set off metal detectors.

I was leery of having a stent before the procedure, but now I am very glad I have one. The chance of me re-stenosing now is almost nil. I haven't had complications yet, so I probably won't now. In fact, a follow up ultrasound this week showed the stent free and clear.

If my stent breaks in half 10 years from now and kills me, I'm still happy I got it. I'd rather have the 10 good years than 40 years of the declining misery I was in before.

Judy2 · 11-12-2010, 01:22 AM

Thank you so much, JM, for answering all of my questions! I imagine it does seem like a miracle to you, having your life back.

I wonder if age has anything to do with the success of the procedure? You sound pretty young -- I just turned 67 last month and have been diagnosed for 20 years. In hindsight, I'm sure it started 14 years previous to that after the birth of my third child and optic neuritis. I feel very fortunate that it stayed in remission all the years my kids were growing up so I could do all the usual crazy things with them!!! Have been in this chair the past five years and can barely slide my feet backward to transfer. Are you familiar with anyone in similar circumstances who had the procedure and what was the outcome?

Do you know of anywhere in the US or Canada that performs this procedure successfully? Traveling a great distance is out of the question for me at this stage, so it has to be somewhere a little closer.

One of my big symptoms has been nerve pain right from the beginning and nothing takes it away -- except being totally knocked out!! I would give just about anything to feel "normal" again and be able to go for a "walk".

Sorry to be such a nuisance asking all these questions, but I'm really interested and don't have the energy to do all the research myself. I'm so glad you found us -- even though you're in a different "class" now!!! YAY!!!!

jacksonsmommy · 11-12-2010, 05:28 PM

Quote:

Originally Posted by Judy

Thank you so much, JM, for answering all of my questions! I imagine it does seem like a miracle to you, having your life back.

I wonder if age has anything to do with the success of the procedure? You sound pretty young -- I just turned 67 last month and have been diagnosed for 20 years. In hindsight, I'm sure it started 14 years previous to that after the birth of my third child and optic neuritis. I feel very fortunate that it stayed in remission all the years my kids were growing up so I could do all the usual crazy things with them!!! Have been in this chair the past five years and can barely slide my feet backward to transfer. Are you familiar with anyone in similar circumstances who had the procedure and what was the outcome?

Do you know of anywhere in the US or Canada that performs this procedure successfully? Traveling a great distance is out of the question for me at this stage, so it has to be somewhere a little closer.

One of my big symptoms has been nerve pain right from the beginning and nothing takes it away -- except being totally knocked out!! I would give just about anything to feel "normal" again and be able to go for a "walk".

Sorry to be such a nuisance asking all these questions, but I'm really interested and don't have the energy to do all the research myself. I'm so glad you found us -- even though you're in a different "class" now!!! YAY!!!!

No one in Canada is allowed to perform the procedure. Damn government. There are a fair number of doctor's doing it in the US and a couple of places in Mexico. I'd highly recommend you get yourself on facebook and check out the CCSVI pages there. LOTS of info. thisisms.com also has a great CCSVI forum.

I am almost 34, so yes, younger than you. I do know of a good number of people who are much older than me who have also had good results. Once you get on the facebook CCSVI sites you'll see literally hundreds of articles from North American newspapers with success stories. It's estimated now that some 5,000 people worldwide have been treated for CCSVI.

A family member of mine referred another person for treatment. He was in a chair and bad off. He has now improved to the point where he can do his own transfers. Have also seen reports of previously chair bound people being able to use walkers now.

Where are you located??

Judy2 · 11-13-2010, 03:01 AM

Thank you once again for sharing your experiences with CCSVI. I didn't realize so many people had undergone this procedure. Even to be able to walk using a walker, would be wonderful at this point.

You asked where I live -- it's Northeastern Pennsylvania, USA. I'm about an hours drive from the New York State border, 2-1/2 hours from New York City, 3 hours from Philadelphia. I believe someone here was going to Albany, New York for the procedure. Not sure how far from me that is....perhaps 3/4 hours?? I do know around this area, there aren't even any MS Specialists, Clinics, etc.

I have seen the discussion at thisisms, but never participated. As far as facebook is concerned, I don't have an actual computer, just an ancient webtv that won't allow me to get on facebook or any of the "social" sites. A laptop sounds pretty good to me now though, I'm getting frustrated with the limitations of this webtv.

Are you in Canada? Thought possibly since you didn't sound too happy with the government! Please stay around. It's really helpful hearing from someone who actually had this done. And at your age -- I pray it's the beginning of a long, MS-free life!!

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