I'm recovering well from my CCSVI procedure. They gave me a CD with some photos so here they are in time lapse.
On Tuesday I was at an MRI diagnostic center at 7am. I was so nervous that I wasn't able to sleep the night before and was pretty miserable. Between my MS and the toll that travel took out of me, I was pretty grumpy. The technician and staff at the diagnostic center were great. The MRV took about 2 hours and I quickly fell asleep during it. I went back to my hotel and slept until my consultation which wasn't until 5:30pm that day.
I met with Dr. Harris who had "good news" and "bad news" for me. He explained that because the MRV isn't very reliable, my MRV results were basically inconclusive. They could only see one blockage of about 30% in one of my jugulars, could not tell if there was any in the other side and could see some "thickening" of the azygote valve. His said that they have seen this a lot and all of his prospective patients have decided to go ahead anyway and see. In his experience, the majority of patients where they couldn't tell anything on the MRV ended up having severe blockages once they were inside their veins and could actually tell what was going on.
Every bone in my body wanted to back out. I'm not sure what I was more worried about. The fact that with every surgery or invasive procedure, there are inherent risks, that they would go in and not find anything or that they would find blockages, open them and then I would still not see any relief.
After a couple hours of thinking it over, I decided to go through with it.
I showed up the next morning at 7:30am. My procedure was scheduled for 8:30am. We did the final bits of paperwork and I got my IV started. The last thing I remember was cracking jokes with the nurses as they determined that they didn't need to shave my groin area and to clean and prep the incision site. They joked that it would leave a stain like a bad spray tan. I laughed and said it was a good thing I didn't have a hot date that night. They went in through the left side of my groin area, which totally grosses me out. The thought of something being snaked up from my leg all the way up to my neck just doesn't sit well with me for some reason.
They injected the sedative as well as fentanyl and I was off to never never land. As a chronic pain patient, one thing I can't stand is subjecting myself to any more pain. At one point I "woke up" because I had been crying during the surgery. It was definitely more painful than other people have made it out to be. Once you see the balloon in the video, you'll see why. They really do open up the veins. The procedure was done in about two hours. They also did NOT have to put in any stents.
I was taken into recovery where I "woke up" pretty quickly. All in all, Dr. Harris, his operating room techs and nurses were all amazing. My only complaint would have to be about the last nurse that I dealt with. She had asked me to put my shirt on to help me get dressed. I sat up a little bit and from that, blood started gushing out of my incision. She was really rude to me and basically chastised me for sitting up. I'm not entirely sure how I was supposed to put my shirt on without leaning forward.
She applied a lot of pressure and I told her it was incredibly painful and asked her to stop. She wouldn't. I was trying to control my breathing and to deal with it. She made some stupid comments about my tattoos and pain and everything else that someone who isn't very smart or compassionate would say. At that point I had tears streaming from my eyes and I'm apologizing to her for crying because I understand that she's "just trying to do her job". I was basically trying to be as nice as possible so she would stop hurting me. My Doctor came in to check on me and basically was like "what the f**k is going on!" and she said something about how I was being "too sensitive" and he told her to go get me some pain medication. When she left, I told him that she'd been really aggressive and has been hurting me a lot and she didn't seem to care. She had put a 10" x 4" section of tape on me and took it off repeatedly. Touching my skin on my legs feels like you're rubbing broken glass on it so you can only imagine how pain it was to repeatedly have it stuck on and pulled off.
When she came back, she withheld the pain medication for at least 20 minutes and resumed putting pressure on my incision. I told her if she didn't stop, I was going to get up and leave. She finally gave me the two percocets and then told me to apply the pressure myself, which I did and it hurt significantly less. She got my jeans and even though she knew about the pain I have in my legs, she was really rough. I told her I didn't need any further help from her and could do it myself but she kept tugging and pulling at me. I was shocked and dismayed by her behavior. How someone could be so careless and mean spirited to someone who was there having a fairly invasive procedure was beyond me.
As you can tell, it was pretty dramatic which is why it left more of an impression on me than the entire procedure.
As far as the procedure itself and the recovery, it was all fairly easy. I feel like I have been in a minor car accident. My neck is very stiff and sore and my chest hurts. I can't cough or laugh because my chest is tight and tender. I have my follow up tomorrow, it should have been today but I fell asleep and missed it. I can't say that I can tell if anything is different yet. I don't think I've had any involuntary muscle spasms and when I woke up this morning my mind felt really awake. Normally it takes me about 45 minutes to an hour to wake up, which means I usually stay in bed for a bit and read before I get up.
My doctor had said that some of the symptoms that I have may not get better because they're on the rare/advanced side but that the big hope is that I don't get any worse. I'm definitely hoping that is the case. I'm also really glad that I didn't have to have any stents put in. I was worried about that.
I'm also not entirely sure about this conversation since I was in tears from the nurse at the time and just out of sedation but my doctor said that when they got into my veins, I had blockages of about 90% and that none of those had shown up on the MRV. My valves were also very thick and they were able to open everything up and they stayed open.
I think it would be prudent for some kind of testing to be developed that could accurately show the veins without having to go inside the body. Especially since one of the biggest things that CCSVI detractors are saying is that in their "studies" they haven't been able to find CCSVI blockages in that many patients during the MRV's. I think it's pretty clear why that is if the testing just doesn't work.
Here is the URL for the video I made of the photos from my procedure. It won't let me embed it on the forum for some reason so check it out if you'd like.
Again, I can't stress enough how great everyone at Pacific Interventionalists were and how great Dr. Harris is. Everyone but that one nurse who I can't remember her name! If you're going to travel and want to stay in the US, Southern California is a great option. I stayed at the Island Hotel which was 5 minutes from the diagnostic center and about 10 from the surgical center. The room was like 99/night and really nice. They have 24 hour room service, a car service that can take you too and from the hotel and the beds were really nice which helps when you're recovering from surgery. If you have any other questions about PI or anything, feel free to ask.