Thank you all. :) :) :) :) :)

I had to go to the doctor again today for my weekly blood draw. They watch my clotting factor to make sure I don't get blood clots. I'm doing very well, TG, considering..

I just read the first procedure report and found out I had so many blockages, not just the left jugular.:eek:

I had balloon angioplasty in about 8 major places not seen on the Doppler Ultrasound, only during the dye infusion. No flow was seen on left, that I knew, but the other stenosed veins were in so many places it was unreal.

Even my chest Azygous had closure at the top curve (Azygous is shaped like a candy cane). No wonder the procedure took so long. Besides using different size catheter - balloons, my Dr had to use different style balloons.

I remember watching him thread them in and out of the opening, like a plumber. LOL Amazing.

So I just have to rest and heal ALL of these places that were zapped. I can do that.

I hope to find more improvements over time. I'll let you all know.

Happy New Year 2011 to all of you. :grouphug:

I hope to find more improvements over time. I'll let you all know.

hmmm. that particular sentence implies that you have experienced some
improvements.

haha. reading between the lines!:) Rest well Lady!

I too am wondering what if any improvements you have noticed. I am so hungry for info about folks that have undergone this proceedure, even if its news that says "nothing changed" or "tiny changes" or "went backwards and now have big sx" Can you tell us what has happened with you?

I was so thrilled when someone posted a video after a year the other day on FB. She has had a huge increase in sx, and is struggling back to the same level she was at a year ago, maybe more. She has had the proceedure done 2x now. It was refreshing to see someone post about an increase in sx. many are only posting the good videos and are worried about scaring us if they post bad things, or scary things.

I would love to hear your story when you can. Even if its no change or tiny changes or going backwards. :hug:

I have a lot of healing to do. That is my priority.. BUT, I am much warmer and have not had my daily morning headaches and a few other goodies, like no numbness or tingling anymore. I'll get back to you all soon.:grouphug:

30 years of junk to clean up takes time.:)

I am better now than before the procedure. I had 39 things on my "Want List." Some minor things are better, my big five "Wants" I'm working on. I'm still sore too-they did a lot of work on me.

Someone famous said: "I'll be back."

Oh HUGS LADY!! May your healing go well~

I thought I left a post, and there is no urgency..but I am seeing my MS doc January 24th and I want to bring up some "vascular" issues. My PCP knows and cannot order a MRA test. But what else should I ask for?

I am just not sure what your history is..and how you went about getting this proceedure.

Best to you.. keep us informed as you are able~

Jan

you have been thru so much.
i wish you nothing but the best in the coming yr.

whenever you're back can i ask how this all started for you?
how did you know? how did you come to decide on this procedure?

No numbness or tingling???? Dare I say WOW?? Keep at it Lady. Awesome.

I just found out that my sister's best friend had the surgery for the CCSVI (sister's best friend also has MS) I need to talk to her one of these days and find out if she had any improvements after the surgery.

Finally, someone I know personally has had the surgery that I can talk to and ask questions...and see for myself in real life if she's had any improvements, rather than just on a youtube video.

Let us know please, Erin.:)

Heal up, Lady. I hope you have all of the improvements that you desire - especially the big 5.

nOthing Thanks for keeping us updated as you heal from this Miss Lady:hug: In Canada there is new articles on this everyday..One article came out in our major paper caught my eye" M.S sufferers owed a explanation"....I think of this as I try to keep going.I phoned Multiple Sclerosis Society of Canada weeks ago for answers on why no real progress on this..Since we are on the same team...Well they never returned my call hmm guess my donations of money and being in 3 studies means nothing.I am just very sad as I am forced to stay in this chair day after day.

Thank you. :)
@ Jan, and Nurse Nancy..and all,
All of the best well-known IR doctors, that we hear about, have long waiting lists. You call them they take your name and number and call you to come to them for a 3 -D Color Trans- Cranial Doppler Ultrasound using Dr Zamboni's protocol. No script needed. IR is a MD.

You don't really need an MRV. Expensive and the US tells you if your blockages meet the criteria for CCSVI. If you want an MRV then get your script from your PCP for Venous Disease. Neuro's are not on board with this, very few are. It is not their expertise.

I told mine I plan to get it, even if by underground network. But that was not the case. All legal and board certified for CCSVI drs now. Three years this is out. Google CCSVI and MS. Or watch Youtube video's CCSVI.

Forget MS, this is for Venous Insufficiency ( but the bonus is MS improvements). Blood can now drain from your head to your heart again and pick up fresh Oxygenated blood. Iron leaves the brain too which they say could cause the lesions and progression. (jury is still out) but iron is bad in the brain.

More oxygen, less fatigue, more brain function, more heat tolerance, warmer extremities, and so on. Everyone gets different benefits... better vision or hearing is some.

I don't have back of head, shoulder or neck pain anymore. MS Hug is much better, warmer body, lots of more odd stuff leaves over time. You have to heal first. If your veins are ballooned, heal, then count your blessings. They don't come right away.

@ Jeep, Canadians are crossing the border and going to California or Albany NY, if you can afford it. They can only write it off on their taxes, the health system won't pay for it at this time.

I paid for mine and I have ins. Because mine is not par with NY. It was worth it, I'll write it off my taxes. Or send it in for out of network procedure. I did have blockages. Even with the good, the bad and the ugly stuff..like sore groin..sore neck a few days.. etc. I'm still glad I had it done.

It makes sense to me, blockages are thought to be congenital (happening in the womb) with CCSVI people and other triggers and over time it gets worse and so do we.

It's a coin toss. People have to believe or not. They all have a right to their opinion on this, or the drugs. But investigate first, then make a decision.

Some Medicaid or Medicare will pay. Find out. Venous disease problem.


.

Even though I am not sure about this being the "magic" that some MSers claim, I'm thinking about it because of the pressure I get in my head when I get up from a sitting position...I feel as if I have a helmet on that's too small, my hearing gets bad, and I have to shake my head for it to clear...I heard of this described as a positional migraine.

:O I didn't know there was a name to this, this happens to be mainly at work when I've been sitting and typing (at a computer screen) for a very long time.

Thanks for the info! :hug:

Lady is wise.

When you check out CCSVI on youtube you may find that details in one of the more popular clips seems familiar to you for some reason..... :winky:

I hope you're recovering well, Lady. :hug:

Which one....there are sooooo many??

Jacksonsmommy, I am not on youtube. I did not make a video. I don't even own a video camera or cam. Not me my dear.

Stop getting all excited Sally. I would let you all know if I did a video.

Thank you Kitty.

Oh, I thought it was a video of Jacksonsmommy..:rolleyes:

I wish someone would make a video after 3, 6 and 9 months. The ones immediately following the procedure are good but only show the people who saw immediate and miraculous improvement. I want to see a more realistic scenario. It's not a cure and I'd hate for people to go into it thinking that it is.

ME TOO! I am so hungry to see folks at intervals, not just the post surgical glow. Many times folks back slide and go into relapses and worry that posting such things would make the rest of us nervous or not want to do it, but I would rather have the truth, than sit and guess what happened later.

Sally is right. I'm one of them....

OK, brat, which one are you?:D

JM, I'd love to watch yours.....but I'm not lookin' at all of them that are posted on there. There's just too many. Give us a link! :) Did you have the procedure?

Well, Kitty put it nicely as she always does.:)

I'm the impatient one.:D Are you Dona, Mona, Lucy, jayne, etc.......?

Amanda!
(I have got no connection to the organization that filmed and put out the video. I got asked if I wanted to do the video less than 5 minutes before filming started. )

Thanks Amanda, here is the link..

http://www.youtube.com/watch?v=f2DiMMNPnoo

You look wonderful and i'm so happy for you.:)
I'm thinking that maybe it's a little late for me to have this procedure. And you did have to have a stent, too. Giving it some deep thought though!

Thank you so much for sharing your tape with us and I hope you keep getting better and better.:hug:

Thank you for sharing your story. how are you doing now 10 months past treatment?

I'm still doing WAY better than I was before the procedure. I do still have some MS related limitations though. Underlying infections still bring on some mild neuro complications - kind of like a mediocre day before treatment.

The biggest improvement has to be the improved energy levels. I think I may still not have quite as much energy as a "normal", but 1000 times better than I was before.

I haven't used my cane once since the procedure. If I have an underlying infection I do still sometimes get a slight limp, but nothing like before. I no longer have to crawl up my stairs. Most days I can run up them! I'm fighting a cold right now and I can still go up them it just takes a bit more effort.

Heat intolerance is still gone. Haven't had the "cement blocks" on my feet since.

It's still so odd to go into a store/park/etc. and not have to worry about getting stuck there because of my legs giving out. I also no longer have to mentally pre-plan around my energy levels. Before it was an elaborate decision making process for *everything* - if I went up the stairs twice I wouldn't be able to make supper, and so on...

I think pre-treatment I was within a year of being out of the workforce permanently. I was also within a year or two of needing a scooter for outside of the house. I was also looking into selling my two storey home. I actually had to cancel my accessible housing home evaluation to take the trip to Bulgaria!

This treatment gave me back my life. Do I still have MS? Yes. This is not a cure, but it sure dramatically improved my quality of life. I can't help but wonder want would have happened if I got the treatment years ago. Could I have avoided all the myelin damage? Would it have then been a cure?

I know that I was one of the lucky ones. The stat I've read is that 1/3 get the great results that I did. I think my results were better because my MS was "mild". It sure didn't feel that way to me though. My life was a daily misery. I can only barely imagine what life is like for people whose MS is further progressed. Considering I think I've had the disease since at least 2000 (and I suspect 1998) I realize that I was already somewhat fortunate.

My advice to people considering CCSVI treatment is to mentally prepare yourself for no improvements. Then any improvements you do get are all a bonus.

I did not go into this procedure lightly. I have a risk management background, so my options were carefully weighed.

Even if only 1/3 of MSers get great results, that is a hell of a lot better than any of the drug companies have been able to do. I figure it's worth a shot.

Amanda, I am so happy for you. You showed great improvement right away. Are you on any blood thinners of anti-coagulants because of the stent? Did you have any follow-up ultrasound done after the 3, 6, or 9 months?

You're are a very pretty young woman. You don't need your cane anymore and you have energy to spare. That's wonderful! Thanks for sharing your video. :hug:

I thought, you thought, I made one. I didn't. I am seeing results slow but sure. I have 30 years of MS junk to clean up. I have MS since you were a toddler. :eek:

I'm healing because my stent got thrombosis. The Plavix did nothing for me, luck of the draw. Now I am on Warfarin and being closely monitored and doing very well, TG.

Lady, how are you feeling now? :)

Lady - did the Warfarin clear the thrombrosis? How are you feeling?

I was given 6 months of Pradaxa, 1 month of detralex and aspirin. I will continue to take the low dose aspirin for the rest of my life.

I did manage to fight and get myself a follow up ultrasound here in Canada at the 6 month mark. I don't think it was Zamboni protocol (even though I gave it to them), but they did confirm that my stent was still patent.

Hi,
I am doing great. It's two months now and I see so many improvements. I'm blessed. I have so much energy too. I go next month for my three month 3D color transcranial Doppler Ultrasound check up, and consult in Albany, with Dr Siskin.

I still take my meds Warfarin, and have weekly blood drawn to stay within the right level so any tiny clots I may still have will disappear, and new clots won't form. I also have a new Blood pressure pill which I hate. It makes me dizzy. I am getting used to it though so that should go away.

I have to be on Warfarin until I see the doctor in March. We'll go from there.

Those drugs you are on Amanda are not approved in the US. They probably are better than Warfarin (which is rat poison). Brand name Coumidin. Maybe I can switch to Aspirin if all is well. As long as I don't clot or re-stenos I'll be happy.:hug:

If I have to do it again, I will. Once you feel like you don't have MS most days, you want to keep it that way. :grouphug:

That's awesome Lady congrats. Good MS news is great to hear. Thank you for teaching me something called a transcranial doppler :)

Lady and Amanda......I am so thrilled that this has worked for you both and that you're seeing daily improvements.

Amanda, I watched the video and it was very informative. Thanks for sharing it with us here.

I hope you both continue to improve. For those this therapy works for it seems like a real breakthrough. I'm happy for you both! :)

P.S. Last Neuro appointment I had he listened to both sides of my neck with his stethoscope. He's never done that before.

Kitty he can only hear the whoosh of the arteries with a stethoscope, I think. Not the jugulars next to them. They only flow down, not pumped by the heart.

They only flow when you lay down. While in an upright position they don't flow, the vein collapses. With CCSVI or any blockage, nothing may flow.

Did he check you while you were laying supine? Perhaps he could hear something with stethoscopes of today.

Your brain drains blood without oxygen down by itself to the heart to get more oxygen from the lungs and then the arteries pumps it back up to the brain so we don't get fatigued, etc. without enough oxygen.

No pump in the brain, so it can back up very easily, like a clogged drain. Not with plaque, that is only the arteries.

The veins get kinks, bones compressing them, webs, valves reversed or missing, twists and turns and more. It happens. They think it is congenital. Just something the happens in the womb. We are not all born perfect.

Something triggers it to occur in the womb. Like lack of sunshine to Mom's in the winter pregnancy, thus more born with MS in the summer months.:confused:

Sorry to ramble.