Monday, July 6, 2009

And so it begins

Where to start? I've read many blogs, posted comments on many blogs, but have never considered starting one until now. I don't even know where to begin, so how about the beginning. I will figure out how to post photos and stuff on here in time, but I've always been a computer "user" extraordinaire, but never have I created anything other than stuff in existing programs, so give me some time. I figured out AutoCAD on my own, so I'll get this eventually. I'm also posting all of this from a computer that, how to put it, has issues. I have a teenager, so I'll just leave it at that (can you say Limewire, Myspace and other virus laden sites?).

So I'll give a bit of back story. I got my diagnosis of MS in August of 2001. I'd been showing symptoms since that March, so we'll say I've had this crap for 8 years. MS is a funny disease (aren't they all to the patient?) in that there are lots of us who have it, but it varies in terms of what symptoms you get and the actual severity of how it affects your daily life greatly; probably more than any other disease, and therein lies all the fun. There has never been one single characteristic, other than shared symptoms, between the different variants of MS until now (it's early, that may change, but so far so good). I'll get to my cursory understanding of that after a bit. This is all about the procedure I'm getting ready to have, but it's mostly about how I have to try and try to understand how I'm going to keep going forward if it doesn't work, because I'm at the point of this disease where things like home modification and wheelchairs and stuff like that are right on the horizon.

I won't bore you with all the details of my particular MS case. It sucks for all of us who have it once it really shows up for real. MS can be pretty mild for many years in the beginning, and even for life for some people lucky enough to have it that way, and it can lull you to sleep. I ran every day pretty aggressively for about the first five years. I have problems just walking now. And that's all happened in the last 2 or so years. So why the blog?

The procedure I'm getting ready to do could potentially stop the disease process. It hasnt' been proven out over a long period of time, which anyone who has MS will tell you will be the true test. This disease has so many quirks, not the least of which is long periods of disease inactivity, so saying anything "works" is something I won't do until years and years of no disease activity. Hopefully this procedure will stop it and allow my body to get to the business of fixing itself.

What is this thing I'm getting ready to do? Endovascular surgery is the actually procedure, but it's aim is to correct something called Chronic Cerebro Spinal Venous Insufficiency, or CCSVI for short. For years doctors have labored using the autoimmune model to categorize and go after MS. There are a lot of problems with this model. There is no antigenic target, and as stated before, there are many problems with it because there are just so many exceptions and that nagging problem of the three types of MS not having a common clinical thread. So it comes as no surprise that the drugs that are out there for MS have very marginal percentages of effectiveness. Some might even say they don't work at all since a great deal of us (a majority) still keep right on getting worse while putting all of this crap in our systems. To me, the people who show effectiveness could quite possibly simply be in a "quiet time" of the disease. I say this because I've been on two of the FDA approved therapies and I've just kept right on getting worse.

So what is this CCSVI thing? Well a doctor in Italy named Dr. Zamboni (insert ice machine joke here) stumbled upon the first common thread ever found. He discovered that every single MS patient has clogged jugular veins and/or a clogged azygous vein. The azygous is like your jugular vein, except it is the main one for draining deoxygenated blood from the spine. I can't get too technical here, so I'll just say that he tested over 100 MS patients against healthy controls and ALL the MS patients had it and none of the controls did. Very exciting thing to find to say the least. So the next step is to perform endovascular surgery and correct the problem. It's not like this is a roll of the dice. It may be in terms of what it may or may not do for MS, but it's a clinical problem that would be indicated to be fixed if it were found in anyone.

So I go out to Stanford University on July 13th to get this looked at and fixed. Each and every one of us who is having this done is certain that they will be the first person to NOT show this characteristic; but the first 8 who've had it done at Stanford have all had it. So far, so good. I'm sure I'LL be the one now, but so were they and they all had it, so fingers crossed. I think this is the dynamic that one creates when they are constantly let down by everything they've tried to this point. You get your hopes up only to have them dashed, so the coping mechanism is to be as pessismistic as possible so you don't have such a far drop if things don't work out.

There is so much detail that I've not included in here that I feel like I'm "leaving out". However, I have created this to track the impact it has on my life, not my MRI. Also I realize that with the exception of the people who frequent thisisms.com, this will be the first time lots of people read about this and we tend to speak with a base of knowledge gained from hanging on every letter typed on this subject for the last 1/2 year or so. Consequently if you have MS and you don't belong to thisisms.com, you're missing out on the best place for ALL things MS on the web. The people there are amazing and one of the people on there is actually pretty much responsible for the rest of us knowing about all of this and having the opportunity to get it done now before it grinds to a snail's pace in an FDA approval process. It takes a special person to just keep driving away until you find someone willing to listen about something they didn't learn in medical school and my thanks go out to her from the bottom of my heart. Most people would be content to just get real educated about the concept and mention it to their doctor or wait around until you can get this done anywhere and fall short of actually arranging a doctor to actually have the balls to do it. I love you Joan.

As MS gets real, it also gets real scary. When you're world just keeps getting smaller and you start not being able to even come close to accomplishing what you want to do in a day, it is the most frightening thing in the world. However, there are people who handle situations like this with grace, and there are others who puss out. I have to be an example for my friends, anyone who cares to listen, and most importantly my wife and daughter. Hearing them talk about taking vacations and stuff without me pleases me to no end because they need to live their lives, but it also rips my heart from my chest. I was a definite 'life liver', but so were/are so very many people who have something like MS or cancer or something else. It's not how bad it affects you, it's how you respond to it that will be your legacy. I don't want anyone to ever think I just gave up. If this is it you'll find no one more grateful, but if it isn't, I need to be able to move on with life even though my ability to move is becoming severely compromised.

So thanks for reading and stay tuned. Hopefully you will see me post of waking up from a nightmare almost a decade in the making. If not, hopefully you can read about how one person deals with handling a disease that tries to rob you of your soul. It may take my body, and it may not, but it can't ever have that.

12 comments:

  1. Hey Lew... it's Erin Lambdin. My dad sent me the link to this blog of yours and I just had to get on and check it out. I have been telling him for months now that I was going to try to call or email you... unfortunately I allow my busy life to get the best of me and rarely get much more done than my homework and actual work. I am getting my Master's online right now and it's much more grueling than I was expecting. ;) Nonetheless, I have really wanted to talk to you for a while now, especially since all of this talk about venous stenosis has arisen.
    I must say that I, like you, am now beginning to experience "MS getting real". As you have noted, MS often felt like something in the back of my mind that I knew that I had and something I gave myself an injection for everyday, but that was about it. Unfortunately, last year I had 4 relapses in 8 months and my symptoms are starting to get much more serious. I develop a limp about halfway through my day (sooner if I'm on my feet for a while) and experience L'hermittes on a daily basis. My MRI results from 6 weeks ago show 4 new active lesions in my brain as well as a largening of the lesion in my spinal cord and a 2nd, new lesion in my spinal cord. I am now having difficulty writing as neatly as I used to and my legs tingle quite often at bedtime. Needless to say, I am very excited about this new research.
    Here's the other reason I want to know more: I am currently on Copaxone but my doctor believes it's ineffective. Additionally, I have tried the interferon drugs but it is as if my body rejects them (I was on Rebif last year when I had so many relapses). My doctor now wants me to switch to Tysabri, which I am completely uninterested in doing. I am going to see him on July 20 and would really like to discuss the MRV procedure with him at that time.
    Lew, if you get the chance to contact me, I would really appreciate it (I would understand if you can't find the time as obviously I have not been able to contact you myself)... but I would really like to know a little more about the MRV procedure and how I could get one done. My email is emlambdin21@aol.com.... I can give you my number then when you email me but would prefer not to leave it randomly on the world wide web. LOL.... Thanks so much! And congratulations and good luck on your procedure! :o)

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  2. Hi Lew,

    How wonderful to start this blog. This will give you an effective way to share your progress with many.

    I could have written your paragraph on vacation.

    Best of luck in CA. I look forward to your posts.

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  3. Lew,

    I am a moron too! It took me an hour to figure out how to post a reply.

    I am so excited for you and your family. I am also jealous because I want to go and have this done too!! Just the thoughts of it relieving this massive 2 week long headache is heaven to my ears.

    I am praying for you and I can't wait to hear all the details of your CCSVI tests and surgery.

    Cat (Cindi)

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  4. Lew,
    I want to admit to the world, as bad as it sounds that Lewis Chapman can still beat me at Golf! I have lived with this for years. I have had therapy.
    I want you to always know that Terry and I are just a phone call or key stroke away to help you and your wonderful family any time you need it. We Love You.
    The blog is a great help for all of us to try and educate ourselves on your journey as well as the understanding of MS.
    We will pray hard for your future.

    Love,
    Geno and Terry

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  5. "Lewis Chapman can still beat me at Golf!"

    Only in my dreams big boy! And back in the day only when I was having a good round and you weren't! Thanks for the well wishes, I hope I won't have to use them.

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  6. Don't make me hold my breath on that fishing trip! I'm waiting!

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  7. Lew,
    I hope your trip to Ca was uneventful. I will be anxiously awaiting your posts. Again, my prayers are with you and your family.

    I just can identify so vividly with your posts.

    Anne

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  8. Lew, God Speed to you my Friend.... We are all with you in thought and prayer today. I told Arti, that when things settle down, you two are gonna have to make a "Boyz" trip to Florida and we will do some fishing! oh, and a few beers....LOL.

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  9. I can't wait Jon. I haven't been red fishing since I was a teenager and I haven't had a beer in about a year and a half. Both sound so good I can taste them both! Just got back from the hospital and waiting to go back and find out, then I'll post again. Love the idea of the Boyz trip. Just being able to be in a boat would be miraculous.

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  10. Keep us posted / updated on your progess!

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  11. OK FYI this is Artifishual AKA Shannon, good Lord sometimes I don't even know who I am, LMAO

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I've figured out how to get everyone to be able to post on here.