I was tested for CCSVI and may join a trial
 

I wanted to fill the forum in on my experience with CCSVI (chronic cerebrospinal venous insufficiency) which people have been talking quite a lot about, especially in the past few weeks. If you need further information about what this is and its connection to MS, I would recommend you go to
http://www.thisisms.com/forum-40.html
http://www.facebook.com/pages/CCSVI-...s/110796282297

You can find contact information and more details about the theory which began with Dr. Zamboni in Italy. In a nutshell, he has argued that stenosis (blockage) in the jugular and azygous veins corresponds with the disease multiple sclerosis. He has not seen this in the control group which included people with other neurological diseases or no disease. He has argued that treating with balloon angioplasty has relieved symptoms and stopped progression. Dr. Michael Dake at Stanford has seen about 160 people and opened up their veins using stents. He is about to start a clinical trial in Jan./Feb. Prior to the trial he was taking anyone who was interested so I contacted him way back in August. I just got back from a consult and initial scheduled surgery. I thought I would share what I found out.

I saw the head of radiology/cardiology Dr. Michael Dake at Stanford University yesterday. I was tested for CCSVI. Two days before I left I got a call saying he had suspended all procedures but I could come anyhow and get tested and consult. That is just as well because I wasn't sure I was ready to jump in and have the stent or angioplasty surgery this time around. Apparently the neurologists at Stanford are flipping out and are not supportive of this one bit. The politics have gotten nasty and Dake has had to stop the surgeries until his clinical trial begins. It is wise for him to start doing this with a clear protocol in a clinical format. This will begin in Jan./Feb. and I can participate in that if I like. It will last 6 months. Half the group gets the surgery and half does not. At the end, those who did not have the option to have the surgery can get it if they want to. It is designed as a "vascular study" to fix venous stenosis, not an MS study, hence it only lasts for a short time and you can still stay on your MS drugs if you want.

Dr. Dake was amazing and an impressive doctor. He loves to yap (which is a good thing) He was chatting up a storm about the BBB, creeping T-cells/B-cells, neurologists in general, reading radiology reports, looking at MRI's, on and on and on. It was like an onslaught of encyclopedia information. I really liked him. And trust me, I've seen LOTS of doctors all over the place, including the Mayo Clinic, and I thought he was one of the best. He seemed so excited about this research and the clinical trial he was about to begin.

The whole thing, however, was extremely overwhelming. I got an MRV/MRI test (the MRV looks at contrast going through your veins). He sat and talked to me and my husband for almost 2 hours. Both my lower jugular veins are occluded by about 90-95%. They are essentially pancaked flat. If you look at them layer by layer in flair cut pictures (slices) by the time you get to the bottom they virtually disappear on the screen. The upper left jugular (very high up) is also somewhat occluded. And there is some other vein high up on the left that looks not quite normal either (I can't remember what it is...near my sinus??). Dr. Dake was surprised I didn't have more fatigue than I do or even more problems. He kept saying, kind of half jokingly "this is not normal, this is not normal," as he pointed to my jugular veins. One of my jugular veins is not even completely round, but in a triangle shape (like it is crimped)--although he said at least some blood was going through that part. I told him I think I am not having more disability etc. because of the Tysabri.

He also said I have extremely low blood pressure. My average is 98/58. So the blood is already not flowing well through my body and then with the occlusions I've got double the problems. What happens when the jugular veins are occluded is that collateral veins develop to pick up the slack and reroute the blood. He pointed these out to me on the scan that offers a straight shot view of the whole head and neck, and there were so many of them (they really shouldn't be visible at all). They lit up like wide hanging strands of spaghetti near the lower jugulars. It was so bizarre to see this but this told him that I had developed this whole other collateral vein system to get the blood out of my brain that was working overtime because the jugulars were blocked or essentially pancaked flat as he called it.

One thing that was interesting is Dake thinks my jugular stenosis is contributing to a problem I have had for years but has gotten worse with my MS diagnosis 2 1/2 years ago. When I wake up in the morning I feel like crap. I'm slow, brain dead, sluggish...it takes me 3-4 hours to really get going, especially mentally. I have mud for a brain until I "wake up" as I call it -- however, if I get up at 9:30 my brain really isn't firing on all cylinders until 1 or 2 pm. I start to feel better and better as the day goes on. He thinks that lying all night in a supine position with jugulars that don't work has left my brain in a bad state and when I'm finally standing it has to catch up and clean out. When you are standing upright, the jugulars have gravity to help bring the blood back to the heart. When you are lying down and they are blocked you have more difficulties.

The trial starts in Jan. or Feb. I'm thinking I may join it, especially after seeing my scan. He said mine was quite blocked compared to some others. The woman who saw him the day before me was missing her left jugular vein among other things!!

I don't know what to think. It's almost like getting re-diagnosed again, looking at the scans of my screwy veins. Dake will be publishing an article soon in a prestigious journal about the first 160 people he did the surgery on. Neurologists at Jacobs Institute in Buffalo are testing 1700 people for venous stenosis (but not treating). They have tested the first 500 people and will release their results about this in February. Another doctor (yet to be announced) will be starting a trial like Dake's on the East Coast.

This may be revolutionary. Even if it is not directly related to MS per se (in the sense of causality) it's hard not to think that jugulars that don't drain can't be good for my body or my brain. So I may want to get the pipes fixed!

Anyhow, I'll let you know if I go into the study and keep the forum posted. Sorry this is so long!!!

Just to reiterate -- if you want to know more or get contact information go to
http://www.thisisms.com/forum-40.html
I won't be on NT every day checking in. Good luck!

All I can say is WOW Natalie. :eek:

It sounds like it's a good thing you got tested and that you know that you have this condition! I can't tell you all the thoughts that went through my head when I read this, how this condition may relate to MS and so many other problems people have!

Let us know when you find out who the East Coast doc is. I for one will be interested since there's virtually no chance I will be going to Buffalo or Stanford. I'm hoping someone from Boston or thereabouts will be picking up on this and it will give those of us over here a chance to get tested.

You're our pioneer now for this condition and the procedure that you choose to follow. We'll be watching and cheering you on in whatever you decide to do! :grouphug:

We won't make any "spaghetti head" jokes just yet! :D

I've applied for the scans they are doing in Buffalo. It sounds like there are a lot of applicants so I'm not sure if I will get asked to participate.

Nothing invasive, just the exams to see if you have blockage. The only thing I'm not cool with is that they aren't going to allow you or your Doc access to the results. :confused:

The only thing that worries me about Dr. Dakes theory of placing stents, is that stents are made for arteries, not viens, which are thinner and more fragile. The possibility of a stent traveling to the brain scares me.

Dr. Zamboni's angioplasty may be a safer route. Maybe this is why the University is not standing behind Dr. Dakes procedure, at this time.

Anyway, you are very brave to consider becoming part of this trial and I applaud you..:hug::hug:

This step takes it to a whole other level. At this point I'll do the diagnostics but I'm too chicken and doing to well to consider the invasive part just yet. I really do think it sounds promising though. No magic bullet of course but maybe something to help stall progression for some of us.

I think I'd be more likely to go the medication route (blood thinners) than the surgical route...at least until more research has been done on the surgical part. I'd like to see a few thousand surgeries done with an excellent success rate before I'd let them start sticking things into my veins in the neck.

I haven't decided if I will join the clinical trial and get stents. I may try to find someone in my home city (which has a big medical school) who would be willing to do angioplasty as it is far less risky. However, 50% of the jugular veins get blocked again by 9 months with angioplasty--they had to be redone. And then, we don't know how long they would continue to stay open.

Actually, someone has already contacted the Neuroradiology Dept. in the medical school in my city and the RN there said the following in an email: the dept. does "angioplasty and stenting procedures for different indications including venous stenosis. This seems to be the heart of what CCSVI treatment addresses. The procedure itself is pretty straightforward and low risk. "

In fact, stents have been put into veins in various situations when blockage to other organs have occured (Budd Chiari syndrome is one of many examples, when the big vein that leads to the liver becomes occluded and a whole series of collateral veins develop around it to try to move the blood). According to Dr. Dake stents are used in veins all the time but stents in veins are considered "off label" use just like medications get used off label all the time. Dr. Dake has found a stent company to make and provide the stents for his clinical study. Who knows, maybe he will patent a jugular stent. I think he already has 15 patents under his belt so far. Thus, I am not as concerned about stents in veins--it's not like this is completely and absolutely new.

But to get back to the risk...I have a few months to decide what to do. I'm not keen on having stents in my veins to be honest with you. I'm not sure how I feel about being one of the "first." I think if it was 50% blocked it would be a different story. However, it was shocking to see 90% blockage on both my lower jugulars and the huge collateral vein system that had developed around the blockages (yes RW, I have a spaghetti head!!). Some of the "pioneers" who have had the surgery said life changed so much it was like going from analog television to HD TV in terms of brain function, clarity, fatigue etc.

Here is a fantastic explanation of what we know so far and what needs to be tested further written by the Multiple Sclerosis Association of America.

http://msassociation.org/news_center...le.asp?a=ccsvi

I will let you know what I decide.

I'm speechless Natalie, excellent post, exactly what I wanted to read on here tonight.

The last part I quoted from your post, rings so true after reading all they explored with you.

I don't know.. if it were me, I'd want the pipes fixed, and not just something to thin my blood medication-wise, which may come with a host of side effects. Of course, safety is a concern as was mentioned. I think they'll find a way to balance that aspect and find a route to safely operate.

I'm not surprised to hear the doctors have their panties in a knot that their profits from drugs and such may go bye bye. :rolleyes:

Yes, I want my pipes fixed also and stents I think are something we hope would not have to be replaced.

FWIW None of the Doctors I know make a penny off the medications. In fact the reps rarely even offer any of the great perks of the past so we aren't even being fed or taken on vacations any more. :wink: I think its more about egos.

If not the medications, think about the other costs. Filling out paperwork, appointments, continuous testing (MRI, etc)...

Sadly you hit the nail on the head with the comment about egos. One of my best friends is in medicine here as a practicing doctor, and that's how he described it, egos. Mind you, he did say some with huge egos or attitudes are also some of the most intelligent people you'll ever meet. So I guess in some cases, it's toss the bedside manner out the window for knowledge? I don't know, I'm sure not a doc! :hug:

I just wanted to give everyone an update on my CCSVI experience. I'm having second thoughts about participating in the trial at Stanford run by Dr. Michael Dake. But it's not because I think this is baloney! I decided that if I get this treated I would like to do it close to home for post-procedure monitoring purposes. So I sought out help in my home area. I saw a neuroradiologist last week and he took a look at the MRV scans I had done at Stanford. He definitely agreed both of my lower jugular veins were blocked quite significantly--so now a second doctor has seen the problem, and this is someone who was technically more objective because he had only recently been reading about CCSVI and was new to the game. In fact, I kept asking him if he was sure he saw the stenosis in the veins and he kept saying yes! :) He and I both agreed there is a correlation between MS and CCSVI but we don't know if CCCVI causes MS yet. But he was very open to fixing the problem since it was so obvious. Anyhow, we may be talking treatment soon. I will keep you posted.

Sounds exciting, Nat. Please do keep us posted. :hug:

Natalie thank you so much for updating us!I can't believe I missed reading your first post.Sorry not on much.Jim

This is exciting news! Hope you are helped with the procedure.

gmi

Thank you Natalie. It's all so very interesting.

Sal and others who may be concerned, arteries and veins are built very differently, and you were quite right when you mentioned that veins are thinner and more fragile than arteries, but except for the Pulmonary veins, all veins lead away from an organ.... the brain included.

Also, where arteries have thick muscular walls, veins have valves that stop the backflow of blood. These valves are strong enough to keep blood from travelling backwards, so they should be strong enough to prevent a stent from moving backwards (against the flow of blood) from the neck up to the brain.

No-one wants surgery, and no-one wants stents, but if I had to have them I would. I'd not be concerned that they might move backwards, up the neck into the brain.

Just the same, let's hope that none of us ever need them.

Hi Natalie,
I don't know how I missed this thread but with my relapse I wasn't on here many days before the holidays.

That said, Natalie I think having found the blocked veins, :( and perhaps having the procedure done near your home is a very smart decision. :hug:

If I had the testing done, and if any blockage was found, I would get the procedure in a flash. Any Vascular Surgeon or Neuro-Surgeon would have done many of these procedures during their ordinary surgeries on patients. They have new, smaller, soft mesh stents, that are great for veins.

Most of these surgeons do similar surgeries for accidents and injuries, birth defects, and other diseases, etc.

I wish you lots of success in whatever you decide to do, and whenever you make that decision. We appreciate your updates, please keep us informed.

Thanks for being a leader. :grouphug:

Hi Natalie!

I too missed this thread until tonight. Wow! How interesting -- thank you for giving us the 'scoop' on the whole procedure. It sounds like a logical deduction that needs to be fixed, MS or not. A couple things you mentioned, hit home with me...the low blood pressure.....taking a long time to "get going" after getting up for the day, no matter what time. Could you answer a question for me? Do you or did you have alot of pressure in your head? Early on before my "official" diagnosis of MS, that was something I kept mentioning to every doctor. It felt like my head was going to explode -- not like a headache, just pressure. Occasionally I would even have a 'goose egg' to go along with the pressure. It seems to have let up in recent years but I wonder if it could go along with the CCSVI?

Please keep us informed in whatever you decide. And I certainly hope there will be someone interested in this here on the East Coast.

Take care......:)

The neuroradiologist I saw seemed so unconcerned about stents in the veins (I asked about arteries v. veins) that he was almost blasé. He looked at the problem and said "I've never paid attention to this before but it looks pretty easy to fix." He puts stents in the brain/head all the time, in both veins and arteries. And my problem is lower jugulars which are even easier to deal with (not in a tight small space high up). He said that you need to keep an open mind when it comes to the venous system and that doctors know much more about arteries than they do veins. He found the idea of CCSVI intriguing enough to keep exploring with me.

Judy, I have never had pressure problems in my head. I did have headaches with my first MS experience, though. Your problem with the goose egg sounds so unusual! Who knows, it could be related.

I do know that at doctor at a NYC hospital is putting together a trial to test and treat CCSVI. He has already treated one person under the radar--I don't know his name but do know he will announce this year. A vascular guy at Georgetown is about to begin a trial too. More and more people are popping up on forums having been tested on their own, and sometimes even treated. In early Feb. the results of a blinded test to look for CCSVI in the first 500 MS and control patients (the total examined will be 1700) at Jacobs Neurological Institute at the University of Buffalo will be released. Word has it that the results are "proof positive" and quite amazing. There may be a huge explosion of interest when this comes out.

If you want the latest info that is not too overwhelming in terms of length and multiple posters, try plugging in Facebook CCSVI into google.

I will keep you posted on what I decide to do.

Just wanted to pop in here to say that the concern about placing stents in veins is not unwarranted.

One of the patients that Dr. Dake at Stanford operated on had a stent come loose from his upper jugular, and migrate to his heart. This patient had to have emergency open-heart surgery, during which he suffered a minor infarct, and the stent was found to have permanently damaged one of the valves in his heart while it was bouncing around in there. Furthermore, the surgery involved actually cutting into one of his ventricles, and this patient is looking at lifelong and life altering repercussions as a result of the surgery, including cognitive deficits caused by his being on a heart lung machine for over three hours.

Dr. Dake ceased performing procedures four days later.

The danger in placing stents in veins is not that they will go backwards and enter the brain, but that once loose, there is nothing to stop them from heading directly into the heart. Unlike arteries, which grow progressively narrower in the direction of blood flow, veins grow progressively wider, thereby giving a clear path to the heart.

I am cautiously optimistic that CCSVI will prove to be an important discovery in the quest to unravel the mystery of MS, and even attended a successful fundraiser for the continuation of the Buffalo University study last night.

I had a CT venogram done this summer, at the suggestion of Dr. Dake, which revealed that I have stenosis of my upper left internal jugular vein.

I've spoken to several vascular surgeons and radiologists, including some at the NIH, who all sternly cautioned against placing stents in the upper jugulars. A balloon procedure would be the recommended way to go, but Zamboni found that 50% of the patients he treated with a balloon procedure suffered restenosis within 12 months.

If CCSVI does in fact prove to be fact, new procedures and stents will be developed specifically to be used in the CNS venous system.

Thank you, Marc. I don't want anyone rushing out to have this procedure, until they've perfected it.

I'd rather keep my MS, if it meant other horrors happening to my body, because of stents floating around. :eek:

I just want to clarify that I am reporting on my experience only. I am not a diehard proponent of CCSVI trying to talk it up in the most optimistic way possible. I still remain skeptical. But since it is my story I didn't feel the need to mention that a stent came lose and migrated to one of Dr. Dake's patient's heart and caused serious long lasting damage and could have killed him (this stent was placed very high up) or the fact that someone else had an arterial bleed after the surgery which could not be stopped since she was on blood thinners. This ultimately led to her death. It was determined by Dr. Dake and her treating doctors that the CCSVI procedure itself did not cause her death (CCSVI focuses on veins not arteries) but certainly being on blood thinners compounded the problem and possibly contributed to this tragic event. So one must always keep in mind there are serious risks of taking blood thinners. Obviously all surgery comes with some risks too. This is why I offered links to the forums in my posts so people could read more carefully for themselves about the risks and possible benefits.

I should reiterate that I have occlusion in both the lower jugular veins. Perhaps this is why the neuroradiologist I spoke with (at a top 10 medical school) thought it might be "easy to fix." It isn't high up in a tight space. All I can report is what I heard from this one doctor. Again he did not seem apprehensive about stents in veins in general. I took his word for it since he puts stents in veins and arteries inside the brain on a regular basis. I was surprised given the "warnings" I had heard elsewhere.

Anyhow, if you want more details about the nuance of the arguments, the dangers involved, the specific experience of patients who had the surgery done etc. please go to the links I mentioned in my very first post.

http://www.thisisms.com/forum-40.html
http://www.facebook.com/pages/CCSVI-...s/110796282297

Everyone needs to make their own treatment decisions for themselves after researching and consulting with their doctors. I have a higher tolerance for risk than others I think. This is why I went on Tysabri even with very mild MS symptoms. This is why I am seriously considering getting my jugular stenosis treated. My quality of life NOW is more important to me then living a longer life in a progressively worsening situation. I have no limitations from MS right now and would like to keep it that way. But others should be respected for their choice not to take bigger or more unknown risks.

There should be more trials within the next year or so. If the consensus is that such surgery will help those of us with the more progressive forms of the disease, I will get on the list for the surgery if I have the blockages.

To me, this seems to be the only game in town that has the potential of making us better. I look forward to more teams researching this procedure and reporting successes which hold promise for the rest of us.

gmi

When I was undergoing such high level chemo, I had several central vein IVs that used the jugular vein. I wonder if those caused scar tissue? I am still waiting for more info to be known. I wish I had more bravery when it comes to being first in line asking to be tested.

Ima chicken! :(

IMO,
Since there are four Jugular veins, two external and two internal, and the Azygos vein in the chest, they all need to be tested for blockage or inverted valves that can cause a back-flow back into the brain, and little back to the heart slowly.

The Carotid arteries bring blood up to the brain and are strong vessels (not not veins) to take the full force of your blood pressure and pump of the heart.

The veins are thin and smaller that drain the blood back down to the heart. I totally believe CCSVI will be our answer. Maybe we are born with it, or maybe something happens to cause this, it seems the more veins blocked, or if a few are badly blocked, the more progressive the MS.

Since it is now considered a "Vascular Disease" (CCSVI) by doctors and labeled as such, the procedure should be easier to test and treat once everyone gets trained and is the same page with knowledge.

It is not considered a MS treatment, because anyone who has a blockage or inverted valves, should have the blockage repaired. It is not healthy or normal to have this. It could cause other diseases and problems just by being blocked.

Sorry I missed this thread...
Natalie, you gave us lots of info regarding this very new theory...thanks for sharing...
Judy, I have the same type of pressure when I get up from sitting...my vision grows darker, my hearing gets muffled, and then I feel as if I have a helmet on that's too tight for my head. Then I hear a whooshing sound, like a large fan, and it dissipates. I told my girlfriend about it and she said her mom has the same thing...that she was diagnosed with polymyalgia, and that this is called giant cell arteritis...I haven't ever had a doc look into it for me...

Marc, your statements about stents traveling to the heart is my main concern about stenting the jugulars...the valves would easily allow the stent to travel down towards the heart, esp with the diameter of the veins enlarging as it nears the heart. This is my chief fear.

Again, Natalie, thanks for such an informative thread...

Well, it's official. I am getting balloon angioplasty this Friday to unblock my jugular veins. They won't be using stents (going conservative at first). I found a doctor to do it so it will not be part of Dr. Dake's proposed clinical trial at Stanford. It will be outpatient surgery although I will be there all day. I am looking forward to seeing if I feel any differently. Mostly I am viewing this as an extra insurance policy to go along with my drugs. I'm not sure I'm convinced this is THE answer or sole cause but I do think it is part of the problem of what we call MS. It could be that CCSVI is a congenital structural problem that doesn't always lead to MS on its own unless you throw some other goodies into the bag--such as Vitamin D deficiency, Epstein Barr or other viral infection, smoking, and/or growing up in the wrong latitude (which I'm convinced is D vitamin related). Anyhow I would like to get the plumbing fixed so my brain is in a healthy state when it comes to blood flow. :)

Cool, Natalie. I hope it makes a positive difference for you.

Good luck, and keep us posted! :hug:

:)Natalie thank you so much! Hope is all we ask for any hope.....After having all hope ruined so many times.....:hug:you rock!

Good luck natalie! Did you have any problems getting insurance approval for this?

Natalie, you are one brave soul! (((( HUG )))) You are in my prayers.

Last year I had an angeogram, so I had the opportunity to see the blood vessels in my chest as they did their job. One of the things that sort of surprised me was just how much these vessels jump, twist, and bop around with every beat of the heart.

I know that all blood vessels don’t do that, but in the high-pressure areas, such as in the chest, neck and head, I’ll bet there’s a whole lot of flexing going on. So I can see how a stent could easily add to the ware and tare of the vein tissues.

Also, did anybody notice the Venograms sometimes showed what looked like extended sections of the vein that looked partially flattened and having an almost twisted look to them? How long a stent would be needed to keep something like that open?

Perhaps they will consider taking a vein from, say, your side and using it to replace the flattened sections. Anywayz, I’m just spit-balling here. I don’t want to be the first on my block to have a procedure, but I don’t want to be last in line, either.

Wow, Nat, I'M excited. :) :hug:

Thanks for the well wishes everyone. And yes my insurance is covering it!! :)

Natalie, great news. :) I'm hoping and praying for a wonderful outcome with the surgery on Friday for you.

Clear those blockages and come back strong, with great improvements. We know you will need some down time to adjust and rest but please when you feel up to it, let us know how you are feeling. We will hold our breath until we hear from you.

It is so exciting. I wish it was me getting this done. I would do it, blockages aren't normal in anyone. If the insurance co pays for it, why not?

A clear blood-flow from the brain is the first step to better health. We cheer you on Natalie.:grouphug:

Natalie, I wish you the best. I've been reading about this procedure, and it sounds like something the MS world needs.

I'm receiving my 6th Tysabri infusion this week, and so far I'm having wonderful results with it. My plan is to give it a full year, then put my name on the list for the Liberation treatment.

Thinking of you
 

So good of you to keep us updated!:)Good luck Fri! I'm thinking of you!:)As we all are:grouphug:Keeping you in my prayers....Jim

Today is the big day! My prayers are with you, Natalie.
:You-Rock:

I am so excited for her! go get um girl! :cool:

Nat, please check in as soon as you're able.

You are, especially, in my prayers today.:hug:

Hi all!! I am home and feeling very sleepy from all the drugs! It was a very strange and ultimately disappointing day. First, the doc and nurses were wonderful--kind, funny, professional. I've never had a more pleasant stay in a hospital! But Dr. X went in and discovered both my lower jugular veins are now completely open. The scan in Dec. showed them almost 90% blocked. There was a large collateral vein system that compensated which was definite evidence of obstruction. Both Dr. X, the Stanford doc and one other radiologist said no doubt it was there. But what happened to the blockages??? He showed me video of contrast dye flowing through the veins today--if anything the previously blocked parts were now the widest part of the vein. There was mild stenosis in the upper left jugular but so high Dr. X said it could only be fixed by stent (the Stanford films showed this too). And of course the plan today was the lower jugs. Dr. X was completely shocked, had no explanation, but also got excited because he saw this as "new" evidence --another possible piece of the bigger CCSVI puzzle. Do stenoses come and go? If they do, they might not always show up on a scan. Are they more an inflammatory reaction since they might not be permanent? Or am I complete freak of nature and just an anomaly? Dr. X has talked with the MS clinic and they are considering starting a trial of some sort. My case throws a wrench in the scheme of what we think we know about CCSVI.

So it was quite disappointing for me especially. I feel like my insurance plan was taken away. I was looking forward to charting any changes. Now my MS is very mild... No progression so I should be happy with that. But I fear the future sometimes and this was my safety blanket. :( Sorry I don't have anything optimistic or certain to report.

Dr. X wants to follow this...maybe ultrasound me every 2 months to see if it comes back or comes and goes. He also thinks this might be a useful clinical trial. Do see him in 2 months. Meanwhile he will confer with the neurologists.

PS: The procedure was not scary at all. I have no pain left where the incision was. During the procedure--just a little headache.

Ya-know!!! Just when something looks like a possible benefit for us with MS, wham! the door slams shut! I'm sorry for your disappointment, Natalie, but thank you for going first. I'm glad you didn't have pain!! Maybe something positive will come of it eventually. But that's really strange.......where did the blockage go??

What's next???? :)