Hi Everyone:
I'm not one to "blog". I guess I just don't have the attention span or maybe it's the fact that I am interrupted every couple of minutes by kids, husband, pets...
Anyway, I thought this would be a nice place to share my experience with the CCSVI testing and procedure.
Things have moved fast for me. As recently as this past summer, I was miserably sick (we had triple digits temps almost almost constantly here where I live and I have practically no tolerance to heat). I'd had my first seizure since 2003 and the MS had really knocked me on my butt. I had already looked into CCSVI and was very interested, but my neuro, while not being mean, was not much help. He told me that if he heard of a study, he would refer me . But he added that there was no medical proof of this and that I needed to be very careful. He said if I could find a place to be tested to "go ahead", but going through with the procedure was worrisome. Who to trust?
I made some friends on FB. I did a lot of research. I eventually made an appt with a great doc in Tampa, FL who replied personally to my email. At the same time, I had also talked to my cardiologist (I only see him periodically to check on my mitral valve prolapse, a minor congenital heart valve condition). But I do trust this cardio and he was amazing when I was in a clinical trial for an MS drug that almost killed me, but that's ANOTHER story. I asked my cardiologist to read up on CCSVI and to give me his opinion. He did, and he was very interested and intrigued. I enlisted his help in finding an IR in our area that he would trust with his own daughter. I waited about 3 months and had not heard back, so I had figured he had not been successful. I was set to go to Tampa. But I had some trepidation knowing that followups would be needed and I don't do well on long car trips, I have a kid who gets car-sick and then there's that Florida heat. But on one wonderful early October day, I got a call from a charming man right here in my state, not far from me at all! That changed everything. It was an experienced IR. He knew my cardiologist. He was the head of IR at a hospital that is 10 minutes from my home and where I have always been treated wonderfully. He could see me 2 days later. He sure seemed to know his stuff. When I went in, I asked some, but let him do most of the talking. I wanted to make sure he hit on all the bullet points. I needed to make sure this was my guy. I needed to make sure if I picked him, he would take care of me the right way. Turns out, he got and A+++++.
By the time we were walking out, I was being set up for testing (Haacke protocol) and it would be at the hospital near my home. The testing could have been a nightmare because it's a lot longer than a standard MRI (for which they have to sedate me anyway due to claustrophobia), but he placed the order so I would be as comfortable as possible and it was over before I knew it. I got the call about 2-3 days later that I had the narrowings in both jugulars 70%+. Ha! I just knew it!!
So now, they had to approve insurance and do paperwork and that was agonizing, but 2 weeks later I got the call telling me that my "date" was 12/8.
A lot of people do before and after videos. I thought about this, but my issues are not easy to see. I can walk. I can probably jump if I put my mind to it. A long time ago, I was actually a Ballet dancer. That ended, not due to MS, but a knee injury. I got that fixed and my little girl is a beautiful dancer. I wish I could dance with her. The balance for something like Ballet is gone. But should I do a video to show people that I can't hold an Arabesque or do Fouette turns anymore? I'd rather not subject myself or anyone else to that. My issues are a complete intolerance to heat-the kind that causes me to collapse in a heap wherever I may be. I have trouble swallowing and my writing has suffered. I am a certified Medical Technician but I would not dare try to draw a blood sample from someone with the juiciest, most stable veins. My vision feels like there is a veil over it at all times. I do wear contacts for vision correction (nearsighted) and they help, but that "veil"-always there. I don't have endurance. I am exhausted just walking from room to room in my house. Upper body strength is non-existent. When I had my knee surgery last year, I was given crutches to use for a few days. The knee was fine, but I almost fell because I couldn't sustain the crutches. As soon as I dumped them and held on to my husband or the walls, I was fine. I don't have pain. But sometimes I do have stiffness and it feels like my limbs are elastic bands pulled to the maximum of their resistance just before snapping. My body always feels heavy and like I'm trying to move thru peanut butter or quicksand. That's my interpretation, anyway. I choke. On anything, or nothing. I avoid eating around others because of that. I had a swallow study by a speech pathologist and I was given a couple exercises, but sometimes, when panic sets in, you just don't want anyone to see you with water coming out your nose for no apparent reason. It's hard for me to say how bad my cog-fog is. I think I have a grip on things, but then I see something laying around. An envelope I forgot to send. A call I forgot to return. There are days that I feel like I'm just "not here".
Soooo... my day came yesterday. I didn't sleep for several nights before, it seems. I'm great with calming jittery people when I'm the one standing over the hospital bed. But when I'm going to be the one in the bed, not so much. I was in total spaz mode. The procedure would take place at the state of the art clinic. They really have it all there. But they need my cooperation during the procedure, so being 100% knocked out-not gonna happen. Eeek!
As soon as we arrived, we got the royal treatment. I don't think I have *ever* been treated so kindly and compassionately by any group of healthcare professionals in my entire life. Every last person there did everything above and beyond their power to ensure my comfort and safety from the instant I set foot in the facility.
As soon as I lay on the bed, I began to shake uncontrollably. Not cold, just nervous. The doc asked the nurse to give me something, then something else (still I wiggled, blabbled and shook). We moved to the procedure room, which looks a lot like a hospital O.R. Eeek, flashbacks of my 2 c-sections (which were not bad either, just big rooms, bloody and scary). Eeek! I blabbed some more, wiggled some more and my trembling was shaking the whole table (told ya I'm a spaz). I think I kept telling him not to kill me, I'm not sure if I was thinking it or saying it. The man has the patience of a saint! Of the many things they gave me, one of them made me itchy and it was my nose that was the itchiest. But I wasn't supposed to move my hands. eeek! At some point, the nurse came with a syringe and she said "The doctor says this is the one that will make everything good. This is Dilaudid". I was about to speak, but the words would not come out. My body went limp and I just felt like I was made of concrete. No more shaking. I heard "Let's get started". The one thing that sucked was that my mouth went completely dry. I was finally able to get something out like "mouth dry, help!". The sweet nurse was right above my head the whole time. It was like she was only there to monitor me and take care of my every need. She stroked my hair the whole time and put a wet compress on my forehead. I think I somehow asked if she could wet my lips. She asked the doc and then folded a piece of gauze and every so often she let me "give it a kiss". That was my lifeline and made everything better. I think she even scratched my Rudolph Red Nose for me :) Then he started talking to me and said I was going to feel a snap in my ear. Right on cue, I did. Then I was going to have to take some breaths and hold them. He spoke to me a couple times (I think I had dozed off because the nurse had to stroke my cheek). He said "hold your breath". Then he said "Ok, now breathe". They kept telling me I was doing great. I think they were just being kind. I think I was a pain in the a**. When he was doing my right side (turned out to be only 60% narrow) I *really* felt that and I really whined about it, but the nurse talked me thru it and it did pass pretty fast. I felt it like a big cramp up my chin, thru my ear up the back of my neck to my head, then back down my arm and my back. That was creepy, but it did not last long at all. I'm told the left side was very difficult (80%). He explained that it was like a pinhole and that he had a hard time getting through, but he was very happy to say he opened it up beautifully. Now, either I nodded off real good or just have no memory of that at all. I have no memory of feeling anything with the left side. I understand thet Dilaudid is crazy strong, so maybe it just took a while to hit me and finally it knocked me senseless. He will have DVDs for me at my appt next week, so I will be able to see and better understand. The Azygos was clear. He did go in and have a look, he said there was nothing to be done there. One thing I do remember is a fluttering feeling in my abdominal area, which I assume is near where they had threaded the catheter (?), that was near the end.
After it was all over and I was in the recovery room, one of the members of the team had to put pressure with all his body weight on the incision site for about 15 minutes. This was not painful. I just thought it looked a bit awkward and kinda funny to have this dude with both his hands pressing down on my crotch... but thankfully, he had a great sense of humor and made good conversation with me and the nurse.I think He told me he's on facebook and I should request him as a friend. He has a kid about my kid's age. They were both gracious and kind. I must have looked a mess. Thank God they thought ahead to give me benadryl but I was still covered in red blotches, had a Rudolph nose and my face was puffed to twice its size. Both he and the doctor went out and met my husband and kids. My family was kept updated throughout the procedure and then at the end.
The one immediate thing I noticed that I didn't even realize till just now as I was on the phone with a friend... I was supposed to lay flat for a while. The doc wanted me to take my first Plavix right there. I always, always, have to sit up if I'm going to drink, certainly if there's a pill involved. But the nurse just brought me a bendy straw and said "just try". I was mortified. I thought I would choke and spit up all over her. I was laying completely flat! She said "just turn your head and try to swallow it". I did this and it just went down with no problem! Just a few minutes ago, I was on the phone with my friend and took several sips of water (as we were talking and I was just fine!). I have been drinking water all night and day and not even noticing how easy it's going down (and through). I have never really thought I had bladder issues. I don't know how to say this and not have it sound goofy, but I have peed more this past 24 hours than I have in years :O
So, my orders are to stay put for 2 or 3 days. I can't shower for 2 days (I know, eeew!). No lifting, twisting, turning. OK, I'm being good and my family is keeping me on a short leash. I think I still may have a tiny trace of the meds because at times I feel a little loopy (nothing like last night). But I am not wearing my contacts and I don't have that "veil" (cool). When they do let me walk around the house, my walking is more "fluid" (my husband's words). Although I'm not giving in to it, I have this impulse to MOVE! There was music on earlier and my feet were wiggling to the beat. I got away as far as the kitchen and I managed a little strut (I really liked the song). I *am* going to follow all the orders and can't wait to get to my follow-up next week.
That's all I can think of right now. I hope this is helpful to someone or for those who wanted to know what happened yesterday, now it's in writing. I finally got to it!! :)
xoxo :)