Having My CCSVI exam tomorrow
 

I broke down and committed to speaking to an "interventional radiologist" tomorrow about CCSVI. He will scan my veins and see what shape they are in, and answer questions and so forth. I have NOT made up my mind how I feel about this research, its process or its outcome.

One of the things that bugged me most was folks were clamoring to get this done, and had a wide spread of videos on the internet showing them stumbling, tripping, and unable to function well, then it went onto a functional balanced person who ran down the hall with no cane, no assistance and a dramatic change in their life. Sometimes you got one or two follow ups, but once six months went by you never heard from them again.

Even if its bad news or a redo or a failed attempt or you back slide to where you were before this thing, I would want to see it! So many said they didnt post anymore videos for fear that it would discourage folks from being tested. Well...duh! At least it was fair to tell us, instead of us assuming your life got better and you moved on and forgot us.

So...IF and that is a huge IF I choose to have this done, I promise to post a video, before, after, one month, two months and all the way thru a year, with or without progress, with or without backslides or a worse disease course.

Step one...go for the exam. Tomorrow is my day.

Say a prayer for me. its going to snow ...again! and we are driving right thru the thick of it to get there. Im so car sick now from the blindness. its gonna be so hard on me to be in the car 2 hours.

Wishing you a good day w answers that you need.

And, I agree w the lack of public discourse about failed or no progress results. I'm not on FB, so maybe it is there?

Thanks for your promise,
ANN

Go get 'em girl. I'll pray it works to bring your sight back, if nothing else..:hug::hug::hug:

ok, climbing in the truck in a minute to go for my exam. Since nothing is being done but an exam, I dont feel the need to post a video.

Thanks
Dej:cool:

Hoping all goes well and you hear the news you want to hear. Even if the procedure brought back your sight and nothing else it would be well worth it. I'm so glad you're getting the chance to at least explore the options.

Report in as soon as you get home. Well you may eat first..:D

Good Luck..:hug:

I hope all goes well for you today. Report back when you get a chance.:hug::grouphug:

:smileypray::smileypray:

you're in my prayers today, sweetie...

This MD does use the Zamboni method. he was well versed in this procedure and has done about 400 or so of them. He did a doplar study of my IJ (internal juglars) and said they looked good, but that doesnt surprise him at all. They are finding the doplar scans are tricky and are not showing true blockages, since the veins are so flimsy and floppy. He agrees that stents should not be used at this juncture until they make stent specifically for veins and not use arterial stents in veins.

He said my exam showed that my chest vein is about 75% closed. My right IJ keeps kinking over, and he thinks I would probably benefit from this.

That being said...only about 50% of those that have this done, see any improvement in sx. The next 25% see short term results and have it redone about once or twice a year to keep the blood flow going. The other 25% see next to nothing, but even if he can improve my fatigue or mental clarity its a win win. He said due to the advance stage of my optic nerve decline he may or may not have any effect on them, and IF he does, it will be gradual and slow going as the nerve heals. I should not expect to jump off the surgery table and then say I CAN SEE! he said it would take weeks to months IF anything at all happens, and I need patience. Even if we can stop the sea sickness, or the vestibular off balance stuff, I would be a better candidate to get a dog, and not fall on it. As it stands, I may not qualify for a dog because my walking is so slow, and I am so clumbsy that they may want me to have more work done.

So..I am being pre approved, and once they get that, they will call me to schedule this. Once that happens and if we choose to go, I will then make a video and post a link for my before shots.

Thanks for the prayers and well wishes. :cool:

Wow...you got a ton of info today...prayers still going out for you dear...

Thanks Dej. It looks like there is a bit of hope there to help you...50% is pretty good odds. Will your insurance pay for this?

:hug:

I asked him to get a PRE approval from my insurance to make sure they will pay and I wont get stuck with a surprise bill later on. This also gives us time to pray on it, and discuss it.

I am VERY allergic to iodine, and its an iodine based dye. The last time they used iodine I stopped breathing and they had to RAM a tube down my throat while I was still awake, because my throat was closing. I have the same reaction if I eat shrimp. it will take some courage to do it if I do. There are other risks such as stroke, or an air bubble going to the lungs, or a tear in a vein or a rupture...you get the idea. lets not even talk about the drug risks or anesthesia. So, its scary!

I will probably do it, even if to allow me to walk better so that I can use a guide dog. You cant have a dog if you need him for balance. Right now I walk slow and lose my balance quite a bit, so I doubt they would give me a dog till that is fixed. Even if it makes my tummy behave better thats a plus!

Loads to think about. :cool:

Dej - That is a lot to think about! What ever you decide you know we support you 100%. Good luck and let us know what you ultimately decide to do.:hug:

Hi Dej,
I was treated in Albany with angioplasty this past September . I noticed a few days of improved balance afterwards, but other than that no real improvements. I didn't do any videos before, after or otherwise. After many months of reading everything I could find about CCSVI only then did I decide to get it done. I'm suprised to see you say that your IR said you have some stenosis in your azygous vein. It's my understanding from all the reading I've done and what I was told by my IR that you can not see the azygous vein by Doppler U/S because of the chest bone blocking it. I think angioplasty ( well, venoplasty really) is such an individual procedure. There is no way you can know how you're going to do by following how others have done. I have noticed however, that those that seem to do best are those that do not have MS more than a few years and therefore do not have any or very little permanent nerve damage. I was diagnosed for MS in 1999 , but my symptoms go back to 1992 when I had my first relapse that was misdiagnosed as Lyme Disease. I went into full remission for about 6 years when I became pregnant.

Would I do this procedure again? Absolutely, because I wouldn't know how my individual case would turn out. From all that I've read I see where some people that are doing really well post procedure say that they think they've had CCSVI all along and not MS( some of course, believe they have both MS and CCSVI) and a few have even had dramatic improvements in their MRI's of their brain after venoplasty. And about stents, I know of too many that had to get stents even though of course, they didn't really want a stent and their IR doesn't like to use stents and tries to balloon the vein more than once before giving in to putting a stent in. Sometimes it is simply the only way to keep the vein open. Let us know how your procedure turns out for you. I wish you all the best and hope I was able to help even just a little bit with any questions you might have.

I called and asked to speak to my IR one last time after finding out that I am approved for the venoplasty. I misunderstood him when he said that I have a problem in the azyoges vein. He said "i PROBABLY" have a problem in that vein, and he was UNable to appreciate it with ultrasound due to the density of the chest...

We spoke again about what I could expect. I asked again about eye sight, blindness...He said he DOESNT expect ANY of my sight to return with this treatment, altho he has seen many miraculous things happen after treatment. He expects that I MAY have some improvement with my fatigue, perhaps balance, and probably mental clarity, but he also realistically expects that I would probably need continued treatment if I refuse a stent.

After extended prayerful consideration. Extended talks with DH. Extended talks with patients who have both had it done, refused it, and those who have had it redone and redone along with those that saw great improvement, those who saw NO improvement and those who had improvement for one month (probably placebo effect) I have decided to hold off for now.

I am anaphalaxis allergic to iodine. (meaning I stop breathing, my face and throat swell) and the last time I had iodine dye I had to be consciously intubated before my throat swelled closed, both DH and I are extremely worried about the reaction to the dye. I have many problems right now, and dont need to add that to it. Spoke to regular MD who was patient, listened and understood my need to seek treatment, who told me about how easily the veins can rupture, the risk of an air bubble traveling to the lung, the risk of stroke or air reaching the blood brain barrier, we kinda got spooked. He also pulled up my old record when I had a bad reaction to iodine dye and reminded me how blistered my arm got with an iodine wash on the skin, let alone what would happen to iodine on the walls of my veins...He then asked why I had this iodine in the past, and he found my old records which SHOW the vein they would be looking for. 25 years ago, it showed to be a beautiful vein with no narrowing, or kinking. They used this test to place a special port for strong chemo and had to be sure the port was placed correctly.

I am trying to weigh the pros and cons and I keep coming up with a mental block that its NOT time for me to do this just yet. DH has been encouraging, but you can tell how frightening this is to him. My neuro tells me that once the optic nerve dies, there is very little chance of it coming back, and since my IJ veins are fine, they believe this procedure would not be for me. I am running into too many that are telling me how scary this procedure would be for someone with my history of such severe reactions, and one question really struck me.

"would I be willing to die to get this done?" death is a very real possibility with how severe my allergy is to iodine dye. So...for now...im holding off. Lets see how my disease progresses without it. If my chicken bum changes her mind I will chime back in, but as of last night and our prayer pro and con debate at the dinner table, WE have chosen to wait.

Thank you for all the prayers, love, concern and advice. I simply cannot march myself up to that table and be willing to risk the could be for the may be.

Dej,
That is very scary...you have a lot to consider...

Can't an MRA of the blood vessels be done? Doesn't that show how they look?

Dej- was doppler the test used to determine flow/blockage?
This is mine which I showed dr yesterday along with mri images that clearly show larger vein or artery on one side of neck vs other. I'm no radiologist but L & R sure look different.
http://neurotalk.psychcentral.com/al...pictureid=6693

This MD used a doplar to determine blood flow of my IJ veins. He said "oh, well, actually your IJs look not just good, but GREAT! so we know its not in there." I said "yeah! something normal in my life is a good thing!" and he said "well, no dear, we WANT to find something abnormal to explain why you have MS, and if your IJ is normal, then I would expect that you dont have this malformation. He said he would have to do the veinogram to know for sure.

IJ = internal jugular vein

I was pleased to know it was normal, but puzzled by his reaction to it. it was like he was disappointed that I didnt show up with a kink. Many years ago after placing a rather sizeable port in my chest for massive chemo they did a veinogram of my chest (i didnt know that is what they were doing) and at the end of the investigation they squirted more idoine dye at me, took the photo and I started saying "im gonna throw up" and "im pretty hot" and then "I feel like I cant swallow" to which the anesthesia guy lifted the sheet from over my face area and said "CODE BLUE! She is going to crash!" as he shoved a tube down my throat WHILE I WAS AWAKE! OMG that hurt! he was not even finished when I passed out. I woke hours later heavily medicated and upset. I had a huge allergic reaction to the iodine dye.

My normal MD looked up my old files from so long ago, and pointed out my ayzogus vein and said "see, its normal" the premise of CCSVI is that its MALformed from birth or early childhood development, its not something that rolls over in adult hood, and either you have it or you dont. Since I see no evidence of it, you are putting yourself at grave risk, only to be told you are clear.

Scary stuff. Im terrified, and if my MD is right...then I have already had that portion of the test without knowing it. DH is saying NO NO NO! please dont do this. I must say that after this much investigation I am leaning with him.

If I had shown any abnormality at all I would be ready to go, but at this point, I see it as dangerous (for me) and too many risks for not enough benefits.

This is my latest creation. Printed out 4 8x10's of other combos but this is the best yet. I WILL be having my Dr order another doppler now that I learned a bit, since the last was my 1st.
I know exactly where to have tech focus. 1 area shown here, the other near C8-T1.
http://neurotalk.psychcentral.com/al...pictureid=6716 Have to tell my Dr forget the whole CCSVI abbrev. Just go by patient's brain cells are dying. Forget MS- Question is WHAT'S killing parts of brain & spinal cord.

I am new here and ran across this post from a google search. What a tough decision you faced. I want to add some information if it's helpful. People who are allergic to the dye are contraindicated from getting the ccsvi venogram done. But there are two IRs who have done the procedure using IVUS alone (intravascular ultrasound) and not the flouroscopy part of the venogram, so dye would not have to be used. They are not at the same clinic: my doctor who has done this is Dr. Sclafani of American Access Care in Brooklyn, and Dr. Arata of Synergy in California has stated that he has done this also.

The other thing that caught my attention was the mention of a chemotherapy port. Depending on what vein this was in, it may have damaged the vein and created scarring that would result in outflow obstruction. Dr. Sclafani has a thread over on *edit* in which he has shared cases, and one of those cases was a patient with CCSVI who also had a subclavian vein obstruction caused by the chemo port. The subclavian vein obstruction caused all the blood flow from the arm to have to reroute into the jugular vein.

I see that this thread is several months old but wanted to add what I could to it. I have had the CCSVI procedure myself and am one of the lucky ones who had improvements that have lasted.

Everything set for the procedure in mid August.

I am glad I am doing this. I won't wonder anymore if it actually would alleviate any of my current sx's.

Less than four weeks away and counting down...

Good Luck Aarcyn!! Keep us posted! Hugs!

Dr. Sclafani has a thread over on *edit* in which he has shared cases,






Marc "Wheelchair Kamikaze" had CCSVI done by Dr. Scalafini (some years back) but not sure if he had positive results.

Aarcyn, looking forward to what you will have to say.

I really believe that if one lives life without regrets, then one has learned nothing from what life has to offer.

Since the stats are low that something truly bad will happen, I do not want the regret about if I had only tried the procedure.

I dream of being a youtube sensation like the girl that could jump again.

Nothing ventured, nothing gained.

And speaking of regrets, I never want to jump out of an airplane at 3,000 feet again. Yes, I really did that over thirty years ago. I was a wild girl in my 20's. And I have plenty of regrets and plenty of stories.

Keeping my fingers crossed and my heart open for you dear Cyn. Make it work!!!:hug:

aarcyn - cant wait to hear how much, even if a smidge (i'd take a smidge) better you become

dej - looks like you can have it done without the dye/death which after reading your reaction to, i'd never in a million years risk the dye, and i've gone 173mph on a city highway in the past on the motorcycle I wrecked on causing complete C7 spinal cut.

@Ed. tx.

I think some of the problems arise when the procedure is not followed, the protocols are changed.

When I first began to cook, I measured the ingredients and kept to the recipe directions. Later, I might change it but to start I did what was proven to work.

Also when I had to have my gall bladder removed, I was given the option of going to a local doctor who had performed the new procedure a couple of times or drive 40 minutes into LA and have the operation done at Mt. Sinai by a surgeon who had a lot more experience.

We went into LA. Three days later I was up and washing my kitchen floor, I felt fine.

So I am going to Albany. Seems like the most positive results are coming from the doctors there.

I will let you know if I can literally jump for joy at dinner that night.

The very best wishes for that Cyn; and I agree with you with respect to going for experience rather than convenience.
With love, Erika

Best wishes for your upcoming procedure
 

Hi all! :) SPMS Dx’d in 2011, but symptomatic for almost 2 decades, looking back on my history. Past 6 years walked with a cane and used a chair for long distances. Extreme fatigue, foot drop, pins and needles in both feet and hands, extreme depression, bouts of incontinence, heat intolerance, balance and co-ordination problems, brain fog, trouble with my swallowing reflex, and lesions on the brain in multiple MRIs seperated by time and space meeting the McDonald criteria for Dx of MS. No spinal lesions. I had never taken any disease modifying drugs, and had been following the progress of the whole CCSVI treatment over the past few years. Since I was getting worse and there was no other options, I decided to give the procedure a shot. I went in as an atheist and skeptical of a positive outcome. Boy was I shocked when I started to feel my legs normally again ON THE TABLE! Let me be clear that I am aware that my results are not typical, and certainly on the best outcome end of the spectrum. It is 3 months post treatment and all of my improvements are holding. The only symptom that hasn’t changed is trouble with swallowing occasionally. But otherwise I couldn’t be happier with my outcome. Proof is in the pudding, and I can verify 100% that my results are not some sort of placebo effect. If you have any questions please let me know. All the best to everyone, and good luck with your procedure Aarcyn :)

I'm too new to post links, but if anyone wants to see my before and after videos just send me a pm.

tilt

Countdown is less than three weeks.

If nothing else, it is an adventure to a different part of the country to look at the architecture and maybe seafood that is not flown in to a landlocked destination.

I do not expect any immediate results (but a part of me sure HOPES that may be the case!). My sx's have been the same and the nerve endings have been frayed for many years.

I do not believe in miracles, I believe in science. Then again, scientific results may be a miracle.;)

Egg or chicken.

Did the procedure on Tuesday. Still trying to decipher between what is real and what is placebo. I fell pretty hard in the hotel room about an hour after being released! Argh! So the sprained thumb and back are masking things.

I fall a lot so it has nothing to do with anything. I need to wear bubble packing material under my c:rolleyes:lothes.

But my right leg can magically lift higher than before. And I am standing straighter. Hands not cold all the time. MS hug is different, less. Improved walking ability.

I am just going to take it easy through the weekend.

Would I do it again? I wish I had done this earlier.

The procedure itself was a non issue. The worst part was when the nurse put in the IV and that is what is done for everything and not even really part of a procedure, I just hate needles.

WoooooHoooooo!! Good wishes to you for many improvements.. Keep us posted.:hug:

Absolutely! Keep us posted!
So glad you feel like it's helped, placebo or not.