My angioplasty was done last Thursday in Clearwater, Florida at a wonderful clinic called AI3 - Advanced Imaging and Interventional Institute. This place is truly state-of-the-art.
Dr. Bulent Arslen did the procedure along with Dr. Jerry Niedswiecki. Both are very experienced interventional radiologists and I was treated so well there I felt like Liz Taylor going to a private hospital.
At my consultation the previous day I was told the doppler sonogram showed two areas of narrowing in my left and right jugular veins. But until a venogram is done, they cannot tell if there are others. I was most concerned about the azygous vein which cannot be seen on imaging as it is a twisty vein that lies under the heart area. Some doctors correlate blockage in that area with lesions on the spine, which is where most of mine are and which impact my mobility.
The procedure itself is not difficult for the patient. You are given conscious sedation (Versed and Fentynol - I asked for more but they said, "good try") and you are a bit groggy but awake since you need to communicate with the doctor. A local anesthetic is given in the groin area and a very small incision is made (didn't feel a thing) where a wire is threaded into the vein and up until it reaches the blockage or narrowed area. This is all viewed on three large screens positioned on the side. (I could see the screens sometimes when my head was turned that way.) I didn't really feel the wire moving until they reached a blockage and started to slowly inflate the balloon. When they inflate it you feel pressure which increases until it gets painful, at which point you tell them it hurts. The doctor then determines if he can safely inflate further or if a different size balloon is needed. Dr. Arslan and Dr. Jerry talked to me the whole time and I knew what was going on. Sometimes you needed to breathe in and hold it while they took images which will later be made into a video (not coming soon to a theater near you). I asked for a copy - my screen debut!
I don't have the written report yet so I can't tell you what size balloon was used and what pressure - but I can tell you that twice the balloon popped inside my vein! Yikes - that was a scary sound! Dr. Arlsan said it was because he used a smaller balloon and inflated it to the max because he wanted to be conservative and not injure the vein. He removed it and changed to a larger balloon which worked better.
So they found and cleared three blockages of about 50-60% each. One in each jugular and one in the azygous. I was surprised that azygous had only one but Dr. A said the number of blockages does not correlate with disability or results - their goal is to clear everything so your blood can move freely and at the rate it's supposed to.
After the procedure they wheel you back to the prep/recovery area and you must lie flat for at least two hours. Zack stayed with me the entire time and was actually very sweet, asking if my feet were cold and being uncharacteristically solicitous. (That didn't last long though - as soon as we left he was his old self. Here he is in the car turning to make some smart comment.)
So after the two hours I was allowed to sit up and be pampered with offers of a selection of juices and snacks. After one more hour I was told I could get up and use the restroom and if I wanted to change into street clothes I could. A nurse helped me to the restroom and I kept trying to determine if I felt different. I had to conclude - not really. But, I just had anesthesia and a surgical procedure so I said to myself, be patient. But I have to say I was a bit jealous of the Canadian gal in the next bed who came in with pain and purple feet and left without pain and beautiiful pink feet. Her results were miraculous - I saw it with my own eyes.
Dr. Arlslan came by with a prescription for Plavix and after-care instructions and gave me his card with his cell phone number - how many doctors do that?! I said goodbye to the wonderful staff and off we went to the hotel where I was instructed to lie down for the rest of the day. I did. I was exhausted physically and mentally. When I woke up I did notice one teeny tiny improvement but I'd have to say it was not significant. It did tell me however that some process was going on in my body and again, I tried to stay positive and be patient. Slept more and slept well - that was new (but maybe the anesthesia?).
The next day I called Dr. Arslan to report that I did not have any problems at the incision site and we had a nice chat about a lot of other stuff and I was cleared to leave but not drive. Zack had planned to drive us back to Fort Lauderdale so that was fine and after breakfast, off we went. Bye Bye, Tampa. See you again for my follow up in January.
It's one week post-procedure as I write this and I'm sorry to report that I have not noticed any significant improvements. The one small change I referred to has maintained which is good, but my mobility is the same. My fatigue seems a bit better but that may be because I'm not at work and not doing all that much. Heat sensitivity hasn't changed; when the weather got hotter and more humid yesterday my legs were like rubber. Bladder issues are still there. Multiple friends have commented that my overall color is better and that I look really good. (Didn't know it was bad before but one person told me I looked gray.)
So was it worth it? Absolutely! If I didn't give myself this opportunity I would always wonder if it would have made a difference. And many people report very slow improvements so I continue to be positive and look for signs. I was inspired to begin yet another diet and hope I have the fortitude to lose enough weight to impact my health. I was inspired to begin a project that I hope will help a lot of other people. I was inspired by meeting two other MS patients who had the angioplasty done by Dr. Arslan and who will join me in this project. I was inspired by Dr. Arslan and Dr. Jerry who agreed to help us. I was inspired enough to apply for LTD at my job and will now devote my energies to helping others obtain the medical help they want and need but can't afford.
My own improvements may or may not yet come. But I believe in the theory of CCSVI and MS and I look forward to my follow up scans. By January my condition may be change, but for better or worse I'm in this fight for myself and for everyone who wants and needs this procedure. Watch this space for more news about my High Hopes project.