Thursday, September 17, 2009

Where to start?!?

Well I'll probably start by cutting and pasting what I updated on the forum where I found out about all of this; so much easier than typing it all again and I will say much of the same stuff, just in a way that people who are hanging on every word of CCSVI 'stuff' will relate to. To say the last few days went well would be an understatement, and just in time really (not for the disease course, just my sanity). The last time I went out, my mother had to wheel me around to every appointment save the MRI because that building was butted right up to the parking garage. This time? Na baby na. No wheelchair...not even post op. I was even telling my stepdad that I couldn't believe I didn't need it pre surgery, but that he'd definitely have to wheel me out. Once again, soles on the ground! That was a most excellent surprise. Being able to walk it all pre op was a pretty big deal since I could not before the first go around. So if you go back a few posts, you will see that we did not (we, like me and the Dr. collaborated on it) do anything to my left side since there was such an anamoly of a valve and everything in the collateral vein where you usually see many spider collaterals trying to make up the flow. So that was all really good, but if you go back a ways on here you will see that the surgery itself knocked my johnson in the soil (ok,it's the internet, it knocked my dick in the dirt!). This time it did not. He placed a stent (smaller diameter than before) right in the middle of the valve and the flow started up. But since it was lower in the neck, there is WAY less discomfort. While he was opening up the balloon to see what the flow would do it hurt like hell, but that has been the worst of my discomfort; right there on the table. I feel like I won't have to be off work next week and that's a reassuring feeling since I work in the hoppin' area of the economy that is the automotive sector.

So read the following through the eyes of someone who is very enthusiastic about the results of the actual physical procedure. I still won't know for some time the long term effects this will have on my MS. All we are hearing is that people with the progressive forms of the disease are taking longer to heal; sometimes very much longer. So I think my pre-surgery walking was a definite sign that the first round definitely did something. I say that because a rosy outlook would never have propelled me as far as I walked by a very, very long shot. There have been more times than I can count that I had the best attitude in the world, but the legs just simply wouldn't physically propel me another step. I never got to that point. So my hope is that I was already healing somewhat and now will continue and heal even more now that both sides are opened up. I did almost forget one thing. My 8 week old stents look EXACTLY like what the Dr. wanted to see. On the MRV, they looked like McDonald's straws they were so round. So temper your reading of my cut and paste of my forum post understanding that I'm on cloud 9 right now since I won't be dealing with Hell week like I did last time. Here's what I had to say to our gang of MS'ers:

This post might be longer than my first post op round as I am almost pain free! I don't even know where to start since everything was almost 180 degrees from my first round. I didn't even do ANY pain meds last night. I had taken .5mg dilodid (I know I spelled that wrong) at about 6:00pm and that was it. One perc. this morning at 4:00am and it's about 11 right now and I haven't even wanted one. For one thing, the stent is much lower, and as we know smaller. There's a small signature of pain that feels like I have a really swollen gland (you know the ones your mom felt to see if you were sick). Sitting at the 'puter is no problem at all.

Dr. Dake came in this morning and I was already dressed from the waist down, shoes and all, with my gown hanging from my IV pump since all the lines had to go through the arms! He was just 'wow do you look alert'. I also feel that way, this quick, amazing. I'm already finding my words quicker, I'm just blown away. I walked 3 laps around the area I was in not 2 hours after the procedure (this time I was where Randi was; along the entrance to the hospital) and stopped in and saw Tracy (Questor). He looked like I did 8 weeks ago post op, but he was very upbeat, but I could tell he was really hurting so I didn't spend too much time in there. Everytime he would raise up to talk to me, his alarms went off and I could tell he just needed to be flat. So there I was talking to him with a catheter bag hanging from my IV pole which had 3 bags hanging from it. "Ain't we a raggedy ass bunch!" was all I could think. I saw Coach too. She will have a story to tell also, but I didn't know where she was in the hospital. She and her husband are soooo very nice as is Tracy.

On to the goods: So after finding out that he suspected my valves were not functioning, he 'went around' them and tried to get flow, and sure enough, the valve did not open. So he puts a balloon in to see what it's going to do once it's open, which BTW hurt like hell this time, and he was like a little kid. I think he actually jumped a little bit and exclaimed "that's it, there's the money shot!". The collateral just disappeared. So after having some fun with his phraseology , I pulled my hand out from under the surgery blanket for a fist bump and got promptly chastised by the nurses about the sterility and all that. I told them I was already sterile, but anyway....

Now I know I'm making some transcription errors in terms of the procedural portion of it here as you are a little goofy during the procedure, but that was basically the gist of it. I found out that last time, for some reason, I was in like an ICU lite room last time (probably just INpatient post op), and this time I was in outpatient aftercare, so there was no pulse monitor or anything and I slept like a rock for about six hours straight. I'm ready to fly home today. Last time, not so much. I ate a turkey sandwich, yogurt and 3 juices right after surgery in the room where you go while you're waiting for your actual room. Well that only lasted about 10 minutes and it was off to my room, and dinner came in not 5 minutes after I got there and I ate the whole damn thing.

So it was great, I am in high cotton right now, but I'm sure I'll come back down and find out how I really will feel by tomorrow. Right now I'm just flying high since it was such a major difference from the first time and I actually feel something (the clear headedness). I can open my mouth this time. Last time that hurt so bad I spent about a week "flattening" my food and putting it to my mouth on a fork and sliding it off with my fingers. The floor around my chair at the table resembled the 18 month olds' area. So this time I'm going to chow. I also walked out, no wheelchair. I haven't used one yet this visit, not once. It has been an awesome experience this go around and I hope I start to see some improvement, but I am going to be OK if this is where I'm stuck. I am walking very well for me and I'm thinking clear. I would still love some bladder relief, but as I've said before, make the walking better and that's not nearly as much of a trial. Seeing Dr. Dake's face when he came in was the best part. I think I caught him off guard. He just kept saying "you look great". That was pretty cool coming from him.

So I'm off to take a nap and will post more tomorrow. Remember my take on cautious optimism. I can't just take all this "like it's all good now". MUCH time has to pass and it's not like I don't have everything going on than I did yesterday. It just doesn't work that way, but I'm very hopeful that I've given myself the best possible chance to recover from this crapola. And that mile + walk I did before the surgery? Well that was real; I'm at the point where I can't just "will" that to happen. I would have been walking like a stumbling drunk and gritting my teeth to beat the band at every step a few short months ago. Just like when you haven't seen your young nephew for a few months and you're like "look how much he's grown!", but the parents don't notice it like that because they live it every day. It's like that. All the improvement is so subtle personally since there a plenty of times that I feel like crap. But when someone who spends lots of time with me but hasn't seen me in a while says "holy shit you are walking great!", I just have to take their word for it!


  1. Congratulations Lew! I'm so glad to hear that this recovery is less painful than the last. Man, I can't wait to get a tast of the HD life. Still tentatively scheduled for Oct 8 and 9, but am waiting for Alex to call me back to see if my insurance will cover it before booking my flight. I am so happy for you and I hope things only get better for you.

    Heather (akaheather)

    PS. I'm still having difficulty posting on TIMS, but I am still trying to keep up with everyone's posts.

  2. great news Lew and congrats on the procedure! i'm done with posting on tims so keep me up to date here and on facebook. later Shannon aka artifishual ;)


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