CCSVI – Chronic Cerebrospinal Venous Insufficiency

It’s been a long time since I said that I was going to make a post, or a series of posts about CCSVI. I started this post way back when I was on an oral medrol pack right now and was going through a ridiculously loooong relapse, I can promise, that I will do my best to link to each source that I got information from, and that I will do my best to explain things to the best of my understanding.

So! First and foremost, the big question:

What exactly is CCSVI, or Chronic Cerebrospinal Venous Insufficiency?
To put it plainly, in people who suffer from CCSVI, the veins responsible for getting blood to flow properly away from the brain and spine are not doing their job. They are, as the title of the condition says, insufficient in their current state. They’re either too small, not there, twisted up and needing to be ballooned out, or they have some other problem.

That sounds like a circulatory system problem. What does CCSVI have to do with multiple sclerosis?
Ah! Now there’s where the story gets both romantic and convoluted.

Dr. Zamboni, the brilliant man who discovered this issue, did so when he was seeking a cure and/or treatment for multiple sclerosis because his wife suffers from it. It’s a totally sweet story, and Canada’s TV5 does the best job of giving you the public interest sappy telling of it, as well as having fantastic TV quality explanations about what CCSVI is.

Check out Canada’s TV5 and their coverage of Dr. Zamboni’s discovery. It’s like watching Dateline or 60 Minutes for those of us who are only used to American network TV. It’ll explain things much more thoroughly than I ever will. I’m a much bigger fan of the brass tacks "What really matters" to friends/family style of explanation.

CCSVI is hypothesized to be the cause of MS.
AND it’s a congenital defect. This means I was born this way, and my body adapted. Dr. Zamboni and the doctors whose research follows his believe that the immune response (MS) to the reflux of blood in the brain and the deposits of heavy metals is that adaptation.

So, what exactly is the Liberation Treatment, then?
Angioplasty, plain and simple, just like they do day in and day out for people who have heart attacks. Only difference: It’s for veins. Crazy thought: Allow proper blood drainage from the brain, perhaps the metals will be removed, and some of the function will return or problems will abate. Not surprisingly, it seems to work.

Unfortunately, sometimes it has to be done more than once because the veins don’t always stay open.

Will it CURE your MS?
No. It is not a cure.

It simply means that my brain will be able to receive and release blood flow normally, as it ought to be able to.

The Liberation Treatment is a treatment for CCSVI. It just happens to make symptoms of MS better. Go figure, you help the brain, problems that happen because of the brain get better. (This is not rocket science.)

I will still need Copaxone to help with my current lesions and to help fight off future lesions. My immune system will still try to eat my nervous system. I will still HAVE multiple sclerosis, but I probably will not hurt as much or as often. 100% of patients who have received the surgery have had more energy and clearer thinking. I might get feeling back in part of my left chest and side. That would be cool. Who knows, it might even help with some of the seizures. It’s helped others.

But is it safe? This is your life we’re talking about…
This is Dr. Salvi (a pro CCSVI-treatment neurologist) from Italy, talking at a conference two weeks ago. Vince, a fellow MS sufferer who is a member of the same CCSVI group as me on Facebook kindly translated the Italian of this video for those of us in the group who wanted to watch it.

Read Below for the translation – the video is in Italian but has English Powerpoint Slides to view.

Dr. Salvi:

      "What interests me, since there has been a lot of bull in these matters, there have been people fabricating things that have never happened. This procedure is simple and well tolerated. Whoever says there has been a death in Italy is a total idiot, (applause,someone holding sign "liberate us") and also people saying its dangerous. I personally have brought a lot of patients to undergo the procedure, and really, come and see for yourself, simple, next.

      "This is the population of the first studies (in yellow). And the most important thing, I always say, and another accusation we have been getting is that we take away the therapies from everyone. We are idiots for performing these procedures, while the only thing patients need is these therapies, and accused us as outsiders.

      "We have not taken therapies away from anyone. We have not taken away any traditional therapies from no one. These are stents, the famous stent they have accused us of putting everywhere and to be the cause of death. There has been one death in the world that had a stent put in, but her death had nothing to do with the stent. We do not have stents for the jugular, so we do not reccomend them."

This is all I can do for now. I’ll put more CCSVI and MS info up later, but I hope this is helpful for anyone out there other than me. I think this is a good start towards improvement for all of us.

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Is it morning? Is it night time? Who knows.

I’m still not asleep.

I can’t stay awake during the day after seizures. I can’t get meaningful sleep at night lately it seems. Nothing but nightmares. Tonight, I can’t even fall asleep so far.

At least there’s VH1 Classic’s RockFest to keep me company. There’s something kinda frickin awesome about watching the video for Aerosmith’s “Love In An Elevator” and realizing that these guys were about my age when they made this video… and a lot less educated and responsible than I have been. They’re just having fun being themselves, and the Universe sort of rose to the occasion. Don’t get me wrong. They had hard times. I know their story. It’s just that I don’t have to be as uptight as I have been. I don’t have to always be so afraid. And I am *always* afraid. I don’t even understand why I am so afraid, honestly.

Ah! Now Rush is on, and watching Neil Peart play… hell, just looking a his setup, makes a girl’s heart go all a-flutter. 🙂 God in Heaven, do I miss drumming. Those roto-toms are so sweet… I miss making music with other people. I miss that feeling of mutually creating something bigger than ourselves, just for a little while. How hokey does that sound? I know that I have the chance to sing backup for my friend Joyce… but there are days when I trust that I can do it, and days when I think that this disease has taken everything from me and that I can’t commit to doing anything other than recording stuff.

I think that’s where I’m stuck right now. Right between awesome happiness and what I fear is some crushing defeat — and that I simply will not allow. It’s like even if I keep having these seizures and I keep having worse and worse MS problems, I’m not going to let it keep me in the house, mopey. That is not how to keep me alive. That is, of course, my biggest responsibility in all of this: care for this body and mind and soul as best I can. And I am very happy to report that in the just-over two weeks without Gabapentin, I haven’t had a single suicidal compulsive thought. It has been a sort of blissful peace, wherein my fears have been able to be those of a normal woman who is getting married.

So, you know, I only have terrible nightmares about being left at the altar or being brutally dumped (always in front of my ex-husband somehow) and in this parallel universe, suddenly, the MS and seizure disorder is too big a deal and now he doesn’t want to marry me because of it…

As though he doesn’t know what he’s getting into. Adam’s been there since the day I was diagnosed. Hell, his shower was the one that I fell in when I first became heat sensitive and was having my first doctor-recognized exacerbation. He was holding my hand when the doctor gave the diagnosis both times.

Still. This is what goes on in my mind. Trust me. I’ll live. I just have to do it a little more purposefully than most, and a little more deliberately than I might like.

I’m going to try my best to focus on caring for body, mind, and spirit – each part of myself somehow, every day.

Surely, if I can manage to fertilize the crops and feed the chickens of all my Farmville Friends on Facebook, I can take the time to care for myself, right? At least, that’s what I’m telling myself right now. You gotta start somewhere, right?

So I started last week. I just didn’t realize it.

I shopped the Victoria Secret Semi-Annual Sale and got myself new bras on Clearance (not sale – CLEARANCE – there’s a difference when you’re shopping their online sale!) and got them and 2 shirts with free shipping and tax for $120. So I basically got these bras that cost $42 regularly for like $18, which is stellar. That’s what you’d pay for Target bras. And I wear these things until they fall APART. I have no idea why they were on clearance unless they just wanted to have different colors. But if that’s the reason, that’s FINE by me.

Ladies, I cannot stress the importance of properly fitted undergarments. They can make you feel like a new woman. I’ve decided that since I’ve got an “invisible” disease, I should make the most of it, if I’m up to it. To that end, having properly-fitting undergarments was necessary, since I’ve lost a lot of weight. I’ve had a really hard time eating. Anyway, having cute shirts and dresses instead of ugly t-shirts makes a huge difference in my perception of myself.

So, if you’re starting to feel ugly, you might give a quick change in wardrobe a try for a week. And a haircut. That makes a difference too.

*deep breath* Hi there.

So. Again I overwhelmed myself and what started as an entry on CCSVI is now almost 7 pages of word document.

There is so much that goes into it and that I want to explain thoroughly in both medical and laymans terms with the right pictures that I’ve seen on different pages that I keep putting off good entries by starting ones that are like “legitimate” like that and not actually writing entries that I need and want to write. And that’s bullshit. So until I’m done writing that stuff and organizing it, I’m going to still write about my life because, well, I’m starting to have one again, aside from just taking meds and whatnot.

New Therapist, New Therapy Style
Welcome to my care team, my new therapist, Ann. She’s been a PhD for many more years than Amy (my previous therapist of 5 years, who just got hers this past year – and who I’m still very proud of for her achievement!), and her practice focuses a lot more on Jungian techniques, journaling, dream journaling, dealing with childhood traumas (of which I now know I have some to deal with – which was not the case when I was shopping for a therapist w/ Amy). Ann’s technique also pulls from other areas of psychology that I like – cognitive behavioral, talk therapy, and others. She’s got loads of experience working with victims of abuse and with people coming to terms with disability, and while she is older, I don’t feel like I’m talking to a grandmother or someone I have to watch my mouth around. She skews to a tad bit older than my mom/dad range, which is really nice and comforting in that “she-probably-knows-how-to-help-me-from-direct-experience” sort of way. And she takes my insurance, which is very excellent for us financially speaking. So far, she seems fantastic.

My homework from her this week is to keep a dream journal. Usually, I’m Johnny-on-the-spot for things like that, but with all the nightmares I’ve been having and how many times Adam had to wake me last night, I just couldn’t start it yesterday. I figure, since this isn’t school, and since it’s for my own well-being, I can use the “It was my last day on steroids.” excuse and start tonight.

Another bright side is that working with her means that I will have someone reminding me that it’s a good idea to journal if I’m not reminding myself to do it anyway. 🙂

A Little Bit Of Unsolicited Financial Advice
So, I thought about it and having this knowledge is not insider trading because I am part of the public and therefore this is public knowledge. Everybody knows by now that last week Gilenia was approved by the FDA as the first oral disease modifying drug. I’d say, whether you’re planning on switching your medication or not, it’s a safe bet that a *lot* of people will. If I had any money at all to invest, I would throw it into Novartis.

Why? 2 reasons.

Reason 1 – Because pills don’t cost NEARLY as much as injections. How much do you think the insurance companies want to keep paying out? They already hate having to pay the thousands of dollars that our therapies cost them every year — and who can blame them? The cost for our care is INSANE. We absolutely deserve the care, but for an insurance company to pass up an opportunity to reduce costs by what I can only imagine would amount to millions — that would surprise me. Especially when this pill’s been proven to be more effective than Avonex, Betaseron, and Rebif. It makes me wonder if those will even be on formularies soon.

Reason 2 – Because pills don’t hurt like injections do – and many of us are just plain tired of hurting and bruising on a daily/every-other-day/weekly basis. Many MSers just want to stop the shots, and who can blame them? I personally inject myself every single night before I go to sleep. I have to do it then, because otherwise the injection site will rub against my clothes and drive me nuts all day and hurt and get bigger and redder. Yeah. Sexy. Hot. MMmm.

Anyhow – since it *just* got approved, it’s still not on anybody’s formulary, which means that nobody’s got it yet. That means we don’t have the real change in value of Novartis’s stock.

I figure, if they’re going to make money off us, we may as well make money off ourselves too, right? Why not invest in ourselves? Maybe we’ll make enough money to afford to treat our CCSVI. *chortle* Yes, I said “chortle.” It’s what I did out loud just then. It’s when you laugh to yourself in that sort of angsty way that says, “fuckin life… you think you’re funny.” 🙂

The thing is: Life is funny. And I mean truly funny. Why so funny? Because…

I have an audition for a game show on Tuesday.
That’s right. I’ve got a screen test in Culver City to perform on the hit TV game show “Don’t Forget The Lyrics!” and I have MS (which makes you forgetful) and a seizure disorder (that makes me photosensitive at times). High stress situations also increase the likelihood of my having a seizure. BUT I MIGHT MEET WAYNE BRADY!!!! AND I MIGHT MAKE MONEY!!!! So I’m totally stoked. I just don’t know what to wear yet, and I have to bring some pictures with me.

It’s like I’ve been in training for this game show my whole life. Seriously.

Anyway, here’s a link to one guy playing the game if you haven’t seen it: Don’t Forget The Lyrics!

Thank you, Mom and Dad for encouraging me to sing along to the radio all these years! 🙂 Maybe it’ll pay off!

I just don’t even know.

There are times, like today, where I just don’t even know what to do with myself.

I get these emails from Berklee with job opportunities and things going on and I think to myself, “MY GOD! I BELONG HERE! I WANT TO DO ***THAT***!!!” and then I wake up and smell the armpit and realize that I still haven’t showered in 4 days and that my hair only looks halfway decent because I got it colored professionally today, and that my body decided to crap out on me in the middle of the day today. I did parts 1 and 2 today with a 3 hour nap in between. I can’t keep trying to convince myself to have a normal job.

And then I’m pissed about the National MS Society thing on one hand, and on the other, I get it — they want to protect their jobs and their families. I compassionately understand. It just still makes me angry that rather than wanting to treat what is so obviously a problem, they are trying to not only ignore it, but to stop it from getting treated at all.

If we didn’t have MS to begin with, and they just happened to notice that these people had vein blockage, there would be no debate about treating this condition. We would be taken care of. But because we happen to have MS, they are debating whether or not we ought to have these vein blockages cared for. It’s absolutely inane. There’s no question whether or not it’s good or bad for a human to allow iron to build within the brain. It’s not good. We shouldn’t allow it.

Does it cause MS? Is it THE CAUSE of MS? Maybe. Maybe not. Frankly, I don’t give a shit.

What I *do* care about is this:

1.) Because thus far it’s been shown that something like 90% of the patients with MS who have been scanned have this vein blockage, I am curious to see if I too have this vein blockage.

2.) If I have this vein blockage, I want it unblocked. I don’t give a good goddamn whether or not the National Multiple Sclerosis Society or Neurology Today or someone’s great grandpappy says it’s okay by American medical hooohaw.

If my brain isn’t working properly because it’s not draining blood properly and (1) we can show this on current technology, and (2) it can be FIXED by current technology, there is no convincing reason to leave a problem like this alone, to continue to get worse. It just makes no medical sense.

It doesn’t mean I’m not going to keep taking my MS meds like a good girl. It doesn’t mean I’m not going to still need my Copaxone to heal up the lesion areas or act like mylin.

It means my brain will be able to get blood and get rid of blood properly. If you ask me, it has jack shit to do with multiple sclerosis.

I don’t think I’m being unreasonable about this. If I were, I would hope that someone, like my newly doctor-ed father would tell me.

Readers, what do you think? Am I thinking about this wrong?

Full of Win or Full of Fail, You Decide.

Wow, today has a lot of ups and downs for those of us with MS. Since I like to end on an up note, I’m going to start with the really shitty:

The National Multiple Sclerosis Society is spending our money on studies about CCSVI designed specifically to prove that there is no such thing, and that helping us have better blood flow to and from our brains won’t help us be healthier or feel better. They are using the money that we raised for them, for our health and wellbeing to conduct studies in the hopes of proving that even if our veins are blocked by 90%, unblocking them will have no effect on us.

Here’s the “links or it didn’t happen proof.”

Pretty awesome, huh?

On the potentially upside, the FDA has voted to approve Gilenia, the first oral MS drug. Gilena is, of course, the marketing name that was given to Fingolimod.

I first started following fingolimod in December of 2008. Anyway, after several years of following friends who are on it on Patients Like Me, Facebook, and also on the blog that I linked to on the prior post, I am avidly and happily awaiting the release of Gilena. It means no more needles and no more sore injection spots! Unfortunately, I’ll be more susceptible to infection, but that just means that I need to be more cleanly. Considering MS happens because of an overactive immune system, worse things have been known to happen. (Then again, what if MS is a vein disease?) I will stay on Copaxone until Anthem/Blue Cross ads it to their formulary.

I wonder how often they update that thing.

Timey-Wimey, Wibbley-Wobbley…Stuff

Every day I stick around, I know is a gift to myself and those I love.

It’s time.

Time for doctors to come up with a cure for this bitch disease. Time for us to show love to one another. Time for me to create.

But I wonder from time to time how long I can go on enduring this level of pain, degeneration, and sudden inability…

Don’t get me wrong. I’m not suicidal right now, but I know I will be again. It’s a cycle, this kind of thinking and with this kind of pain. I’ve had the realization that I that by writing about this like I am for you, I am proving that I am clinging to life with every fiber of my being. I’m not sure how that’s helpful, as though I’m proving some sort of case, but if there’s a Defending Your Life jury later, I want this on the record! *lol*

(When I was writing this originally the song “Don’t Stop Thinking About Tomorrow” started playing on the radio and it was so ridiculously apt, I couldn’t help but note it in my notebook so that I wrote about it later! I will post the lyrics at the end of the post.)

I love Doctor Who again for touching on suicide. He said Van Gogh was fragile, but he could see TRUE THINGS that even the Doctor could not. In fact, the Doctor went so far to say that Depression might not even be madness at all. That certainly gave me a smile. 🙂

I’d wager there are a good number of people who are depressed who watch Doctor Who and are given hope. I know I am.

If I must suffer, at least I can take solace in the fact that pain – emotional torture, most especially – shows us in all of our humanity: both the horrible with the initial trauma and the pain that follows – but also the magic and strength of the human spirit as it heals with love and work over time and through sharing one’s hurt with others.

My brother, Daniel, has long been a fan of the Yin-Yang symbol and the taoist philosophy it stands for. During my embarassingly young divorce, he slipped me a copy of The Tao of Pooh that changed my life. Though, truly, if I hadn’t learned those lessons then, I have no idea how I would have handled things when the seizure disorder came around!

In a very real way, Daniel is my Big little brother. I love him very much.

This is me and my bro last weekend when we went home to visit Mom and Dad.

I took really good care of him when we were little. I made sure nothing bad ever happened to him because he was the most important thing in the world to me. I sure hope he knows that.

In case I didn’t brag on him in here too, he just got his J.D. recently from U.C. Davis! I’m very, very proud of him too.

I’m also very seriously thinking of getting a yin-yang and some beautiful art around it tattooed on my left hand inner wrist area, because I am a person who would never ever deface art, and who often needs to be reminded of 3 things:

1.) To balance my world
2.) To call my brother and keep him close, because my life is SO much better with him in it
3.) That I am God’s art. We all are, and thus, I shouldn’t harm myself either.

Don’t Stop…

The Fairytales We Tell Ourselves

I was lucky enough to be flown to Vegas this weekend to visit with my nuclear family to celebrate something far more than 7 years in the making, but 7 years that we were definitely looking at: My father’s obtaining his license as a doctor of osteopathic medicine!

That’s right, dear readers, my daddy is now not only a lawyer but a doctor! He totally rocks!

But, much as I wish it were, this is not a blog about bragging about your family. It’s one about life with MS and a seizure disorder… and unfortunately for everybody who was ready to throw down in true party fashion, the heat in that town was over 105, my heat sensitivity was out of control, and I had IV-SM corticosteroids less than a week before the visit, so they were still coursing through my system. Needless to say, this lead to a visit that was not big on dignity.

There were seizures; there was spontaneous vomiting; and at one point, I’m pretty sure I had an out of body experience where I witnessed my own head spin around backwards while I spit up pea soup….wait no, that was the Exorcist. I just was acting like I needed one because *BOOM* out of nowhere, a trigger hit, and I was a total psycho at and after breakfast on Saturday morning because of the ‘roids and post-traumatic inability to handle myself. I was a mess and a half.

I think every child, at some point, sells themselves a fairytale about what their life will be like that’s based on the life or the story of someone else, but life’s not like that, you know? If there’s anything that puts that fact in your face CONSTANTLY, it would have to be a seizure disorder and MS together, because you just *never* know what you’re going to get. And anytime you get excited, sometimes it’ll work out, and sometimes it won’t. But every time you get worried, you can guarantee, it will fuck up any plans of going out and having a good time.

So I’m at this point in my life where it’s ok to be excited about something, or happy, but not ok to be worried. *lol* So it’s a great time to plan a wedding as long as no one is on my ass about it. And so far, nobody really has, which has been pretty magic.

You’d think, based on what I’d written up there, that I’d had a horrible weekend with my family — but truth be told, it ended up being really good, because despite that awfulness, tantrum and all, they wanted me to stay and they wanted me to talk about whatever was upsetting me. My family showed me, even if it wasn’t always in a way that I understood or appreciated in the moment, that they love me… that all 3 of them will love me even if I lose my mind.

And I’m scared of that. Honestly, there are times where I am. But I’m more afraid of not reaching out to them in the moments when I do feel like I’m actually myself again to let them know that I was still in there when the immaturity was happening.

So for Dad to want his celebration weekend to be spent almost entirely in the house was almost entirely on my account. But I appreciate the hell out of it.

I think there was more that I was trying to say in there… but this is what came out. They reminded me that just by being me, and just by doing the things I do, I make a difference.

And that’s not a fairytale.