My procedure at Pacific Interventionalists with Dr. Harris

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

My procedure at Pacific Interventionalists with Dr. Harris

Postby heartsandskulls » Fri Jan 07, 2011 12:07 am

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.

http://www.youtube.com/watch?v=yqzC4vl3-Ow

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.
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Postby heartsandskulls » Fri Jan 07, 2011 2:14 am

Does anyone know how to embed a youtube video into the forum? Or does it simply not work? When I try it, it just shows the embed HTML. It says HTML is "off" in the side bar but I don't see an option to turn it on.

Let me know! Thanks!
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Postby David1949 » Fri Jan 07, 2011 1:22 pm

Congratulations on getting Liberated. Best wishes to you. Please keep us posted on your progress.
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Postby heartsandskulls » Mon Jan 10, 2011 6:30 pm

It's been 6 days now since my procedure. I overslept and completely missed my check up on Thursday so I'm going to go back to Dr. Harris tomorrow. I'm sure he understand fatigue after dealing with so many MS patients recently.

I can't say I feel any different. My neck and chest are still sore. The pain from my waste down is still there as is the numbness in my hands and arms. I still have dropped my phone at least once a day. I think the only thing that I can say for certain that seems to have cleared up are the spasticity because I haven't noticed it happening. I am usually fairly self conscious about it so I notice it when it happens. I recently had a relapse prior to the procedure so my body had just recently changed a lot, with some long term symptoms fading away after having been stuck to me like glue for two to three years.

I was really comforted (not sure what other words to say) when Dr. Harris had told me that they couldn't see any blockages on my MRV and that they could only see some thickening of the valves. I was worried that they'd be all "oh yeah, everything is blocked!" and it would feel like a scam or a "magic bullet" so to speak. I was worried I'd be walking into something that felt more like a "hard sell" or a used car salesman than a medical procedure.

He said it happens with a lot of patients because the MRVs are basically junk, even utilizing the Haacke Protocol. I can't say enough good things about Dr. Harris and his bedside manner. He really took the time to talk me through everything and even though I haven't really noticed any changes yet, I don't regret it. My wallet might a little bit but I don't.
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Postby CRHInv » Mon Jan 10, 2011 7:37 pm

Hang in there and keep us posted about how you are doing. Thanks for taking the time to write such complete accounts.
Remember, rest and hydrate!
Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Jugular » Mon Jan 10, 2011 10:24 pm

With me, I noticed a general pattern of "last in, first out" with my improvements, so if the same is true of you, the older symptoms take longer. I hope you see some good gains soon! Also, I've noticed that some of my gains were masked by muscle atrophy and disuse. So if you notice anything, try to capitalize on it through (gradual!) exercise and re-training or at least trying to do some of the stuff you stopped doing.
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Postby krcmum » Tue Jan 11, 2011 4:06 am

Thank you for the detailed account of your procedure and I'm sorry to hear about the miserable nurse. I am hoping to go to their clinic later this year. I'm quite worried about the pain but I'll handle it I guess (I'm a chicken) but am determined to see if I can get rid of my cold feet!
Here's to continued improvement for you.
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Postby Crystwo » Tue Jan 11, 2011 10:46 am

I too went to PI and they were great. Mine was 11 days ago and am also seeing some significant (to me) changes. Loved the nurse I had, sorry you drew the crappy one! Physical therapy starts tomorrow for me, maybe that'll help you too. Best wishes for all of us!!
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Postby htribe74 » Thu Jan 13, 2011 12:33 pm

"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. "
"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."


Is it just me or is that a bit concerning? Isn't MRV used as a "screening" method to detect whether or not a patient needs to be liberated? From that statement it sounds like regardless of screening results, patients are treated. Am I missing something?
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Postby daniel » Thu Jan 13, 2011 1:22 pm

htribe74 wrote: Is it just me or is that a bit concerning? Isn't MRV used as a "screening" method to detect whether or not a patient needs to be liberated? From that statement it sounds like regardless of screening results, patients are treated. Am I missing something?


MRV is worse than doppler is worse than a venogram at detecting stenosis
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Postby krcmum » Mon Jan 17, 2011 12:24 am

I`m a bit confused about the procedure at Pac Int. It looks like they will perform an MRV BUT still go ahead with treatment even if it is inconclusive.
I was watching a video posted today on youtube by a lady who had been treated at another clinic (American Access center) and she said MRV didn`t show any blockages for her but she did indeed have significant blockages which showed up on a Doppler ultrasound. So, I want to know if the doppler is done at Pac Int.
Any replies would be appreciated.
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Postby Crystwo » Mon Jan 17, 2011 8:51 am

They charge $8000 no matter what (and it's well worth it!!). Dr. Arata was able to tell that I had CCSVI simply based on the list of symptoms I gave him. A venogram is the most acturate however.
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Postby Cece » Mon Jan 17, 2011 8:59 am

Some doctors like having the MRV images as a road map going into the procedure. There is information to be gained from them, it's just uncertain whether the information is necessary or worth the cost, or if it's misinformation that might confuse the issue.
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Postby krcmum » Tue Jan 18, 2011 4:52 am

Thanks for the replies. They are much appreciated. I am so looking forward to heading down to CA later this year ,from Vancouver, BC.
Right now we are prepping our house to go on the market. It's really the only way we can afford this but we do want to move anyway.
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Postby Cece » Tue Jan 18, 2011 7:59 am

This is the second time I've heard of someone selling their house to afford CCVSI treatment. I am sure there are more such stories out there. It breaks my heart, it's not a fair situation to be in.

I know all the doctors have different methods, the doctor whose methods I have the most confidence in is Dr. Sclafani.
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