I went back to work last week and that was the real litmus test of whether or not I have gotten significantly worse from the relapse I had before the surgery. I'm happy to post that I did just fine. Nothing better or worse than before I left, so that's good. The dizzy thing at lunchtime, and at other times, is still better and that is a Godsend. I thought I'd copy and paste my correspondence to Dr. Dake this week to describe exactly what has been going on with me. Like I said, nothing much has changed. The reason why that's a good thing is that I had to alter my immediate expectations of what this will or won't accomplish. I have been reading the different accounts of others who have had this done and did the only thing I could do; compare! Well about half of the original "stentoneers" have not had this crap as long as me and have experienced some almost immediate relief in heat tolerance and the like. I know I've spoken of it before, and it's still the same.
So take a look at what all the drugs are really supposed to do anyway. They're supposed to keep you from progressing. After 8 years of MS and climbing about halfway up the numerical disability scale (the EDSS), if this stops my progression? That would be a dream because it won't involve incredibly expensive medicine for the rest of my life that states, and I quote "The effects of Tysabri have not been studied on humans for any more than two years". OK, that's not verbatim, but it gets the point across. And it keeps killing people. The odds are like 7500:1 or something like that, but still, the risk is there. My feelings about all of those drugs are well known and I know I've described them before so I won't belabor the point. So I feel kind of stable and undizzy and still sleeping better and not peeing the bed; bonus! Hey, I know that kind of shit is personal, but if you have MS, odds are you deal with bladder issues in one form or another. So since the creative juices are simply not flowing tonight, I am going to go ahead and copy my email to the "wizard of Stanford". Word is that he's formulating a trial for this procedure. Just like the MS drugs, it seems to have a more profound effect on people who have not had MS for many years. It would be wonderful if you could get diagnosed, and then just go get surgery. How cool would that be? Well anyway, like I said I'm just not in the writing mood tonight, but I have to keep this up, so here's what I wrote to Dr. Dake today:
Weekly status report from Lew Chapman.
I don’t feel all that different than I did last week, and that in and of itself is a good thing. I’ve had some good things occur when I expected to be dizzy due to exertion and didn’t get dizzy. I’ve also had some similar things with eyesight, but since my ON is still flaring up when hot, and my dizziness also when hot, I can’t say that it’s anything to speak of. I have tolerated going back on the coumadin just fine in terms of the rash. I got my INR checked this morning and told him he could still adjust upwards on the dosage because my rash has not returned at 1 full pill one day and one ½ pill the next. So if he has to crank it up to get to a 2, I told him that would be OK. But since I was at a 1.2 level on ½ pill daily, maybe it’s correct now, but I just have a feeling that he will want to crank it up so I’m ready if need be.
Some subtle things do feel to be functioning better to me, but they are subtle so take them for what they’re worth, but I’m a pretty self aware individual and my feeling is there has been some real change. First off, let me discuss the things that are no better and no worse. They are as follows:
Heat tolerance – not better in this regard. However, I do feel like I am recovering faster from the effects of heat.
Bowel function – no change, constipated all the time.
Bladder function – no change in terms of voiding volume. However, I have had only one night time accident and I even told my wife “I’m probably going to pee the bed tonight”, as I drank much later than normal by about an hour and a half.
Energy level – unchanged
Leg strength – unchanged. This basically means that I can still only go for about a 1/8 mile continuously before the wheels fall off and I need significant rest to do it again; it doesn’t truly ‘reset’ until the next day.
Things that I FEEL are slightly getting better:
Balance – I have been putting on my pants the old way; ie, not hanging on to something, or sitting down to put my legs and feet through and then getting up to pull them up. This, however, sometimes has me stumbling but not falling, but I can do it more than I used to be able to. But then again I’ve been TRYING this, so take it as you will.
Dizziness – this is a biggie for me. I don’t feel as dizzy as often. Every day around lunch was a guaranteed time I would get dizzy. Every day. It hasn’t been happening here lately. I still do get dizzy however, but once again I feel like I recover quicker.
Eyesight – my eyes don’t “go out” as often as normal. It was taking almost an insignificant amount of effort (like eating or having a semi loud conversation like in a crowded room) to make my ON flare up. Now it seems to take more effort for it to do so.
As I’m writing this, I’m noticing a trend. All the stuff that I perceive to be getting better is all “head stuff” and the other stuff is more functional system stuff. Maybe I’m wrong on that, but it does feel that way.
My neck and shoulder pain are manageable. I haven’t taken any pain meds for about a week with the exception of a couple of Advil from time to time, so that’s good. My spirits are good as I have lowered my expectations for this. Allow me to explain; I have taken to expecting my progression to stop sans drugs. If the CCSVI procedure does that, that is an enormous success. I needed to quit thinking I was gong to be running again; who the hell knows what type of repair will happen, but even if it works out that way, I don't think it would happen this quickly. To think that I’d get back to normal may not be realistic seeing as how I’m a 4.5 EDSS’r and I’ve had this for 8 years now. Also there is the distinct possibility (who really knows on this?) that I am SP. I say this because my neurologist (new one who ordered the latest MRI's) is saying my MRI is pretty unremarkable. So undoing damage is probably more up to me if we did indeed “stop the bleeding”. That is my hope now. We can get used to anything. People who get disabled from an accident or something can adapt because their baseline isn’t always changing. Ours is always getting worse, and it’s so hard to keep adjusting to be able to live your life once you’re saddled with a certain amount of disability that just keeps changing. So if we could shut of the damage spigot, I think I could adapt and even overcome some things. That’s my hope anyway.
I look forward to mid September (our follow up time) and will keep sending you weekly updates. Hopefully you’ve encountered so many different scenarios by that time that my “bucket handle” collateral and my “pancake jugular” will be old hat to you and you can just “cut with confidence”! OK, I know you aren’t cutting us, but you know what I’m trying to say.
I just got back from a big grocery store I frequent to get fresh fruit at lunchtime. It’s all the way in the back of the store and I inevitably get dizzy and have poor eyesight just by the act of retrieving my lunch. I feel pretty much the same as I did when I left to go to the store and that’s an improvement since it also happened that way all of last week. So the new mantra for Mr. Impatient Lew is “there’s no progression...... like no progression!”
Take care and have a great day,
So even though I repeated a few things in the opening paragraphs, that is pretty much how I communicate with Dr. Dake. He's a busy dude so I think email is better since he can just get to it when he has a minute vs. a phone call. I promise I'll get more philosophical and write more next week. It's so cathartic for me, but my daughter is getting a bass lesson and I want to go and eavesdrop!