Friday, July 23, 2010

Patience. Perserverance. Hope. (5 weeks post-procedure)

I was waiting. And I hate doing that. But I wanted some fantastic news to report in my next post... except nothing earth shattering has happened recovery-wise. In fact, I'm not even sure if I can say "steady as she goes" because that wouldn't be very accurate. It's a constant flux of symptoms. It's exhausting to obsess about how I'm feeling every second of every day. I'm tired of obsessing about it.

Of course, there are other factors at play that determine how I'm feeling. First of all, I haven't been too diligent with my diet. Too much fruit, not enough veggies, not rotating foods... and oh yeah, last night I ate cheese pizza for the firs time in 18 months. Real cheese, real gluten... real tummy ache. In fact, right now I have a big ball of something in my stomach. Probably that delicious, glutenous, chewy pizza crust. While I'm stuffing my face it's a fantastic idea and totally worth it. Hours and days later? Not so much. It all started with one piece of hot, crusty bread at Carrabas's a couple of weeks ago. Then I snuck a couple of ginger snaps. Then, a bite of a sugar cookie. Bad Susie. So now I'm back on track. I begged my husband to be the food police and he agreed. I won't like him when he's doing it but it's what I need to do to stay on the straight and narrow.

And the pizza incident, by the way? Totally pathetic, secret eating. The hubs was at work. Some friends dropped it off. I shoveled it in and immediately regretted it. So sad.

Then there's lack of sleep and fatigue, the nemesis of every person with MS, just waiting in the wings for a comeback. I started physical therapy a couple of weeks ago. First time since February and post-procedure and thoroughly exhuasting. I have new therapist (the clinic director, in fact - all of the staff has changed except for one therapist). I like his approach, more so than my previous therapist's and am hopeful that it will lead to great results. I know for a fact that my balance and walking is better, even just marginally, because the one therapist left that worked there the last go 'round has commented a couple of times "there's no way you would've been able to do that before". Susie:1 MS:0

I tried my best to explain CCSVI in the most truncated version possible. He was skeptical, to say the least. Until I told him about 90% absence of spasticity in my legs. To which he replied, "That's not placebo. You can't fake that." Susie:2 MS:0

He asked me what doctor did it. I told him I couldn't say. And then I told him to not put it in the report to my neurologist (who still doesn't know I did it but prescribed the therapy for me so he'll get regular updates). He looked at me like I'd had it done in an alley with a rusty knife. Finally he said,"I'll tell him it's the Ampyra or hypnosis or something like that." Susie:3 MS:0

Back to sleepyland: When I'm tired, I get around worse and then I think that any improvements were all in my head. But I still stupidly try to do everything I would do when I'm not feeling tired. And, for reasons I will explain later, the worry monster has made another appearance which severely affects my sleeping habits. He's settled in quite nicely. I really want him to leave. Susie:3 MS:1

On top of that, a new comment was posted on my youtube account about my videos: "Unless you put up the caption for the pre and post videos, there is no way to tell the difference between the two videos. No change on right foot and still need to balance using the wall. Sorry it didn't work out."

My response: "Wow. Go tell some kids that Santa Claus doesn't exist and ruin their day instead. You're wrong. The time difference on each video is proof alone."

I didn't want that sourpuss's comment to get to me. But it did. I really wanted to say eff you, but I would never. Yes, sometimes it's called for. But I just don't have the cojones for that. That dude really ruined my day. And the day after that. To say I was in "a mood" would be an understatement. Way to go, youtube jacknut. Why do people do that? I didn't post those videos for naysayers to pop my confidence balloon. I'm looking for validation. Aren't we all? Even my response is proof of that. It's about believing in something and wanting reinforcement.

This happened about a week after I had a one-month follow up with my Interventional Radiologist. On July 12th I went for an MRV (an MRI of your veins) of my head, neck and chest. It's a way for my doc to see if all the areas he ballooned in my jugular veins are still open. My appointment was on the 14th. Thank goodness Keith went with me because it was a lot of information to absorb.

The status: all three areas are all still open, except the left upper internal jugular vein (behind my ear) which is looking slightly narrowed. But, he said that could just be anatomical - and if it isn't, it will need a stent at some point in the future.

The interesting news: on the MRV of my head, he found that my right sigmoid sinus is almost completely occluded - to the point where all of the blood draining from my brain is only draining down my left side jugular back to my heart. Sigmoid sinus, you ask? What's that? Find out here. Can it be fixed? Yes. But, it seems a bit trickier - it's just inside my skull, almost to the top of my earlobe. And it will definitely need a stent because it's so severe.

Sidetrack: What's the big deal with stents? Well first of all, it's a permanently placed foreign object in your body. Once those suckers are in, there's no turning back. They're more painful and require a longer recover along with blood thinners for about 6 months and blood work twice a week to make sure the blood thinners are working (because you don't want a blood clot). One of the blood thinners prescribed, Lovenox, is a very expensive injection - with insurance. And there's still a chance that even with a stent the vein could narrow again.

This news blew my mind. Does it mean I'll see more improvement? Not sure. But it does make sense that I've only seen marginal improvements to date, because not all of the problems areas have been re-opened.

When can it be fixed? Well, my doc consulted with a neuro interventional radiologist that he works with who said it can and should be done. And my doc has done it before. To get more information/feedback he's attending a Professional Symposium on CCSVI, where he's going to present my case. (Pretty cool; and it's going to be recorded so I can watch it after the fact.)

I'm a little hesitant. The main areas of focus in CCSVI research (so far) have been the jugular and azygous veins. The sigmoid drains to the jugulars, though. The wheels in my brain started spinning as soon as we left the appointment. I sent a message to the Chief of Radiology/host of the symposium/champion of CCSVI on, where he has graciously made himself available to a hardcore onslaught of questions from desperate MSers. His response: "That is a worrisome issue. I would not myself treat such a problem, if it was real. I would work with my neurointerventionalist as a team." Ohhhh-kay. I responded back to ask what about it specifically was worrisome... so we'll see what he has to say.

My doctor did consult with a neurointerventionalist and I have complete confidence in him. I'm 95% sure I'm ready to do this. He said he could schedule it for August or September. He wants me to follow up with him when he gets back from the symposium... which is next week.

If I could just get through the next few days... at least for some news. Then I have to decide what I'm going to do.


  1. Hang in there Susie!!!

    And screw that guy on You Tube!

  2. First of all, you know what they call a drummer who breaks up with his girlfriend right? Well of course you do, I'm probably only the Millionth person to ask you.... I like your blog... We've spoken (uh written) on facebook. I'm in Florida and we mutually agreed to mutually agree to not tell each other who our doctors might be... So far that's working out i guess. Creative outlets are the best way to deal with this. I actually like to write, but in short bursts, otherwise my ramble takes too many turns.. I've settle on making pottery. One can let the mind wander.... I saw you've sworn off facebook for a bit...I'll PM you if any info needs passing.