Saturday, July 24, 2010

A couple of weeks past my one year 'check up'

Well it's been a few weeks and I'd been waiting on the images from my MRV to be able to show what's what in my head and neck instead of just describing it, but since that's where we're at, let's get it on. As those of you who are frequenters of Facebook and know, things haven't been totally on the upswing for me in the last few months. I need to put this all in context however. After all, I'm sitting here in my dress clothes getting ready to go to a wedding reception NOT wearing my hiking boots. Those of you who know me personally know that I wear boots or hi tops 100% of the time since shoes simply don't have enough support and it will wear my calves out in 20 or so steps. No shit. I can't explain it and I really don't know why, only that it is. I still wear them most of the time, but before the procedure they were also my bedroom slippers, I would step into them right out of the shower and it was actually pretty funny sometimes; at least according to my lovely wife. Suffice it to say that I was scared to wear anything else since I would get weak, in pain and wobbly very fast out of them. So I didn't EVER wear anything but those dudes out of the house. So even though this isn't a post where I tell everyone about all the things that have improved, I'm still so much better than before it's remarkable. BUT since I did have improvements, it is absolutely a let down when things start coming back.

So since I posted a while ago about all my symptoms and whether they were better, worse or unchanged, we'll just do it again. Here is that list from that post:

Optic Neuritis Better
Chronic constipation Better
Over active bladder AND Detrussor/sphincter (urethral) dissynergy Unchanged
balance problems Better
chronic vertigo Better
Foot pain Unchanged
Leg pain Unchanged
Leg weakness Unchanged
Leg spasticity Unchanged
Gait (stride) issues Better
Some sexual dysfunction (hey, I said I was going to tell it all) Better
Stiffness (ha ha right after that!) Worse

The things that have gotten worse are the constipation (qualifier that I'm now taking two different drugs where that's a side effect, so the jury is out on whether that's actually worse from MS or the drugs). I've been getting transient vertigo when I over do it and that was almost gone. Once again, it's still markedly better than a year ago. Leg pain is the biggest thing that's gotten worse. If there were such a thing, I'd go for a knee transplant. My knees hurt so damn bad I'm walking more bowlegged than Robert Duvall; and I already WAS somewhat bowlegged. And finally my leg strength has diminished somewhat also. I simply can't be on my feet for as long as I could even a few months ago and can't walk as far.

So now you know what's going on with me. Nothing has gotten better, and those few things have gotten worse from my new post procedure baseline; not from where I was before the procedure. So all is not lost. It's just scary AS HELL to not be improving since the opposite of that is getting worse. And no one wants that. Life is good, just not as good as it was a few months ago and it's probably more scary than actually physically life altering so there we are. So I'm hating stairs because of my knees, hating getting dizzy again, but loving that I still don't need my cane. So on to what we 'found' at Stanford.

If I would have said that I was fine, Dr. Dake would have just said everything looked fine too. Yes, I'm still the proud owner of two McDonald's straws for jugular veins. And yes, I still loves me some stents. That ONE SINGLE article in the Wall Street Journal has everyone majorly histrionic concerning stents. Don't ask me why since we ignore the people trying to tear this down on every other front, so that one puzzles me. After all, there is a 40 some percent restenosis rate with balloon angioplasty, so count me in as a fan of stents. But since I didn't say all was hunky dory, he kept looking further 'down the MRV'. Now I have to describe what we saw without pictures. I hope you all can picture this in your mind's eye, so here goes.

When you are looking at your images from the top of your head down, you see your carotid arteries and your jugulars on the right and left. In the image, your nose is at the top of the screen and your ears are left and right. Well your carotid arteries show up as these perfect, white circles on either side of your head since the contrast dye makes them appear that way. Your jugulars are right next to them. The first, pre procedure images had my nice round carotids and my jugulars were just these flat lines. Now my jugulars are even rounder than the carotids. They look great when great means open for business. So since I said I wasn't great, he kept looking downward into my body. Your jugular veins 'dump' into your braciocephalic veins, it's either those or your subclavean veins. If anyone points out to me that those are misspelled, you would probably be right; I don't feel like googling it right now and that is the hooked on phonics version. Well those veins that the jugs dump into (know I'm not talking about actual jugs Lisa you perv :-)) go 'across' your body, or 90 degrees opposed to your jugs. Well there's an area where that SUBC or BRACIOC vein goes around something (I think it was my trachea) and it's stretched so hard that it is markedly narrowed. He noticed this since there was a collateral vein shooting off. Your body just doesn't have collateral veins unless it needs to manufacture them since the main vein isn't doing its' job. They show up on your legs as spider veins, that's what they look like in MR images also.

So we also looked at my last venograms from my last procedure and there IS a flow issue there. Not like the ones that were in my jugs, but one nevertheless. So I could be having reflux right there. If you remember, he saw something on me the first time that he didn't know what to make of, collaborated with other doctors, and I went back out and we fixed it. Same story this time. He told me he could put a stent in there, but he just doesn't know if it would do anything or not. So he's supposed to send my images around to other guys that have been doing this in Poland and other places and see if they've encountered this and what they did for it. Just because there's a collateral vein there doesn't mean that the occluded vein plus the collateral aren't doing the job, but we do know there's at least some impingement to flow at that area, we just don't know if jamming a stent in there will have any effect. So we wait. This has given me a good reality check fo' sho'.

Let's say that is causing issue, and there's nothing we can do about it. I've already accepted the fact that I have MS. So when MS'y things happen, I can't act like someone shot my dog. Those things happen when you have a condition. So getting upset every time things happen is like banging your head against the wall. But that's what I was doing. I started to get dizzy and I was all screwed up about it. We didn't know if this was going to take us back to normal; hell, we didn't know anything. But I see other people who are having remarkable results from this. Guess what? They are still relapsing and remitting. I'm progressive. That sucks but it is what it is. I can do NOTHING about that. I'm still working. I'm still doing social things (not everything, but 'stuff'). I still have a great marriage and daughter. So I can't 'woe is me' this situation. I just can't. Those of you who follow this know that I'm hell bent on handling my MS with grace no matter what happens. People do it and I have to be one of them. Sometimes when you get scared, you get desperate and feel hopeless. It's not to say that those times don't happen. They do, it's that you can't let them define you. I mean this is my life whether I like it or not. So I'd be a giant pussy if I let it make me put my head in my hands and just give up. My life is decidedly not what I wanted it to be; but it sure could be worse. But I can't do a damn thing about what I am now. I need to like myself and have a way of looking forward to tomorrow. When you quit doing that, you are screwed. I can't take self esteem from physical prowess anymore. Boo hoo, I haven't been able to do that for a long time, so I need to get over feeling envious when I see people doing things as simple as dancing at a wedding. I'd LOVE to be able to do that, but I can't so I need to move past that. I have to say that I do miss the nutjob and very physical guy that I was. But that in and of itself is not enough to knock me down. People who let that get them are not working hard enough.

I still have loads of hope locked away. No one, except someone who needs it, quite understands how powerful hope is. It is probably the single most important thing that keeps us out of the looney bin. It's amazing how my attitude towards hope has changed now that I watch what happens to me and others when you get some hope. It's an awesome thing hope is. It allows you to look forward. It's kind of that simple. It's a reason. It's whatever, I can't fully express it like I want to so I'll stop. A good analogy would come in handy here but analogy boy just doesn't have one! OK, here's sort of an analogy that I'd like everyone so inclined to read. It's a woman's take on having a disability (she just happens to have lupus) and it is the best thing I've read in terms of describing what it's like to people that aren't sick. Here it is, and it's great:

I read a story in 'The Week' last week about the only surviving quadruple amputee that got that way in Afghanistan. He has no arms and he has no legs. Yet his spirit is indomitable. The whole hospital is in love with the guy and he's touched a nurse so much she wants to marry him. He talked about wanting a daughter. You know why? So he could tell her first date "you should see the other guy!". Now how can I EVER feel sorry for myself when he's out there?


  1. Lew, On the knee issues. See an orthropedic doc and ask about the Euflexxa shots. Really helped the pain in my knee. Painful knee(s) will make your legs feel week. Did mine because it was so exhausting to walk.

  2. Loobie, I can't find your e-mail address, but I was wondering if you could do me a very important favour, that won't take any more than a moment of your time.

    I have been asked to collect data to document CCSVI procedure, and I need certain information:

    Type of MS
    Country you were treated
    Date of your procedure
    pre-angio EDSS score (self-assessment is fine)
    1, 3, and 6 month post-angio EDSS score

    EDSS Chart - Please estimate best as you can. :)

    If you could send this to my personal e-mail address, it will be greatly appreciated.

  3. Anonymous said...
    Sorry for the delay to answer you. May-Thurner syndrome is very well known. The Italian knew about it. His text was censored.

    Did they enter by the left side in your case ?

    When you overhaul a vw motor, you have to fix the head, the sleeves and the crank otherwise the job is botched...

    July 17, 2010 8:25 AM

  4. Hi Lew,

    Don't know if you still read this. Do you think maybe you have a form of Thoracic Outlet Syndrome and something (muscle/fibrous bands/rib) are compressing those veins? This is something to ask Dake if you are still pursuing this.


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