back to school...

well today was the first day back to school... for everyone but me. i made the decision last week to delay my return. that was a tough one! all summer i was thinking that i was going back to school as per usual, unfortunately my body did not get that message. after much thought and discussions with my husband, mom and friend, i made the decision and my doctor agreed 100%. my mom made a good point, i was only going back to work this week because school was starting, not because i was ready to go back. i have to remind myself that this doesn't mean i am not going back, i'm just not going back right now.
as you may have guessed, i have not had any amazing and great improvements after the second procedure. it's very strange and doesn't make any sense to me. if my stent/vein was blocked by about 90% and was ballooned and opened, then you would think that i would show some sort of improvement. i am seeing a new naturopath and she is recomending chelation (which i started last week) and a prescription of ldn - low dose naltraxone (which i will start tomorrow). the chelation will detoxify my system of heavy metals and the ldn is suppoed to help with muscle spasticity and fatigue. by doing this, not returning to work and starting an exercise program (yes, i am considering going to the gym!) i am hoping to improve and get back to work! a new gym has opened downtown and they have specific classes for mobility challenged people and the instructor has studied/researched ms. i just have to put down the crochet hook and go down there! (my first fair is on october 2nd at the festival of the grape in oliver. i'm starting feel a little stressed knowing how many more toques i need to make!!)
thanks for all the love and support!
xo

i can't believe it has been 10 days since my procedure! where does the time go?
this was definitely a different experience than last time. there was no dramatic changes like last time. i was sick over the weekend after my procedure so that sucked. not sure if it was a bit of the flu or a reaction to the anesthetic or what. that was no fun! by monday i was feeling much better flu wise but wasn't noticing any big changes ms wise. we flew home that day. when ricardo's parents picked us up at the airport, his dad commented that my walking was better. he said i was stepping instead of dragging. ricardo and i thought that was interesting as neither of us had noticed. i was tired, we had been flying for the last 5 hours and it was 10 at night. all factors that would make me not walk very well. since then, i have been paying closer attention and i think i have improved a bit. over the weekend we were camping and a couple friends that i see regularly and know how i was walking, agreed that i was walking much better! i'll take it! it's not as dramatic as last time but i'll take it! also, looking back to the day we flew home, i walked quite a ways in the calgary airport by myself (ricardo had to go ahead) and i was fine. i didn't really think about it at the time, i just had to get to customs. :)
last week i had my follow up phone call with the doctor. this clinic is concered with treating ccsvi, not ms. there are about 10 specific ccsvi symptoms and they happen to also be ms symptoms. when we spoke, those were the improvements he wanted to know about and if any of my other ms symptoms improved, he said that was a bonus. it's interesting because everyone else is 'treating' ms. so ms really is a neurological disease and ccsvi is a vascular disease and they are intertwined... it's all such a mystery!
all in all, i feel good and am hopeful that i see more changes as the summer goes on. :)

the day after

what a different experience than mexico!! when they said my procedure was 9, they meant 10 to!! none of this mexican time! i was in and out in about half an hour. i slept through most of it. the nurse would tap me to hold my breath at certain times but other than that i was in lala land. i was very awake in mexico and had a lot of pressure and discomfort in comparison. afterward i did have the anesthesia hangover though! that sucked. eventually they gave a magic hangover pill. my only complaint is how they dress the wound. in mexico, they used a dense gauze cylinder on the puncture wound and taped it down crazy tight. these guys put a little bit of gauze on it with some tape. every time i move, i am to put good pressure on it. well, when i was getting off the bed to get dressed, i couldn't get myself up and hold pressure. oops! i gushed blood everywhere. needless to say i wasn't leaving. they got the bleeding stopped with pressure, pressure, pressure! it's all good. i guess i didn't quite understand the importance of pressure! i just slept on and off for the rest of the day at the hotel.

today, saturday, i'm doing alright. haven't done anything yet. we are just taking it easy. i'm still a bit wiped. ricardo has been awesome, of course!! he's been at my beck and call. he holds pressure for me while i heave myself out of bed. then he walks behind me still holding pressure so my hands are free to hold the wall, the chair, etc, on the way to the bathroom. i'm sure it looks ridiculous!! the doctor warned me that i wouldn't have the same exhilarated feeling i had after the first procedure. he doesn't know why that is the case, but it seems consistent. and i have to agree with him. i'm tired and not really feeling exhilarated at all. very weird. so far the first improvement i have noticed is having warm feet. they were freezing yesterday till about 5ish and then all of a sudden they were warm! i guess it's a start. :)

i was able to do a bit of shopping on thursday to replace some of my stolen items. westjet is being great about it. i had to file a police report with a very unfriendly officer at the airport and then westjet gave the go ahead to shop! i did the fastest bathing suit shopping trip ever and got a smokin' deal. (who steals used bathing suites anyway??? gross!!!) i'm not sure if sears in canada has land's end in store but if they do, you should check it out! i'm hoping to do some more replacement shopping before coming home. maybe hit the roxy store and the hurley store! ;)

thanks for all the love!!

xo

Round 2 is in the books

There was very little waiting around this morning. We arrived at the clinic at 7:30 and the admission process began right away. After a couple signatures they took Azure-Dee in and prepared her for the procedure. Around 8:45 they sent me out to the waiting lounge and wheeled Azure-Dee away. I'm told that procedure lasted just over a half hour.

The doctor said that the procedure went well. Both the left and right jugulars had minor narrowing but nothing overly significant. The azygos on the other hand was again the culprit. This time the issue was a built up of scar tissue at the location of the stent. He said that it was 90% blocked and that the blood flow was reduced to a trickle. They used a balloon to treat the area and he said it responded well to the treatment. There is no way to know if the problem will return. All we can do is hope, pray, and keep her on blood thinners.

Right now we are just hanging 10 in the hotel room as she rests up. I guess we will see over the next couple days if she will see any improvements. Let's hope she does.

California.

Yesterday we arrived at LAX on schedule but we didn't leave the airport on schedule. Someone decided to help themselves to half of the contents of Azure-Dee's bag. That took some time to sort through but it looks like Westjet is gonna go good for it. Among items taken, her bathing suits. Who steals a used bathing suit? We got to my brothers place downtown around 7:30 and grabbed some food from Danny's Taco truck parked out on the street. Pretty good for a trailer with a "B" rating on the window from the health inspector. 'Even went back for seconds.

We met with Dr. Arata this afternoon to talk about the procedure. He says they have observed 2 basic valve issues common in the jugulars. One being a malfunctioning valve and the other being a valve that works just fine but is to small. The latter being more difficult to treat effectively for long term results. He says that from the scans it appears that Azure-Dee has the valves that are too small. Not the greatest news but good to know. They are going to treat both sides and we'll see what we get. There are a few potential issues with the azygos. It could be a valve issue, a scar tissue problem from the stent, or some sort of kinking issue. He doubt's its a clotting problem. Realistically there is also a chance that there isn't much wrong at all. That would be horrible news but news we have to be ready to accept should that be the case. The only way to know is to get in there and check it out. So that's what's gonna happen. The procedure is scheduled to start Friday morning around 9:00.

Gonna be a big day.

Almost time to go!

over the last while, i have been asked numerous times if i am excited about this second procedure... i am excited, of course, but i think anxious is more like it. maybe nervous, a bit stressed... i mean what if it doesn't work? or what if it does work and doesn't last again? that would be really hard! i am trying not to worry about it too much as i have no control over it. trying to keep positive thoughts!!
i spoke with one of the doctors at the clinic last week. he was looking at my scans from mexico while we were on the phone. he walked me through what he saw and what would likely happen in my procedure. my left jugular would be treated - it wasn't in mexico. my right jugular would be treated again but with a larger balloon. and the stent in my azygos vein looked to be placed in the wrong spot, possibly a little low. he figured they would have to add 2 to 3 cm of stent to my existing stent. all in all, nothing too complicated or abnormal. works for me!!
we leave for la on wednesday morning, visit with ricardo's brother and wife that night. on thursday we head to costa mesa, have a consultation at the clinic that afternoon and then friday is the big day!! we, probably ricardo, will keep the blog updated so that my mom doesn't have a heart attack from all the worrying that she is sure to be doing!!
thanks for all the love and support! i so appreciate it!!
xo

An Update to the Update

well it's been an 'interesting' couple of weeks, to say the least! on easter weekend, i fell down some stairs and hit my head on the wall, getting a mild concussion. thanks to the fall, i finally listened to my body (and my husband) and considered lessening my work hours or taking a medical leave. i really didn't want to do either but i knew something had to change. i spoke to my doctor and he agreed that a medical leave until the end of the school year was a good idea. the day i told some of the people at my school that the next day was my last, was an emotional one. i was sad and very frustrated that i was unable to do my job. they were all so supportive! at the end of the day, i was walking out to my car and in true ms fashion, i tripped on my own foot. i remember stumbling towards my car thinking that if i can reach it, i could catch myself. well, that didn't happen. i fell and hit my head on the curb! i'm not sure if i was knocked out. i don't remember anything after tripping until i was in the medical of the school. sounds like about 15 minutes or so that i don't recall. aparently i didn't know what day it was, the date, what had just happened, the meeting i had at the end of the day, etc but i could remember my social insurance number! weird how the brain works!! anyway, i went to emerg and had to get a couple stitches in the side of my head and of course, i had a concussion!! 2 in 2 1/2 weeks!! not good! aparently i needed to fall again to really confirm that taking the time off was a good thing!! i'm pretty stubborn that way. that was all at the beginning of may (may 5) and i am feeling much better concussion wise. my ms is still acting up - my legs are very stiff and my balance is off. with my time off, i am taking it easy. resting when i need to. going out when i feel up to it. i am trying to not put any pressure on myself to tidy up or get to the grocery store. on what was supposed to be my last day of work, i was to go on a lunch date with my student. needless to say that didn't happen. we finally went out yesterday. it was so awesome! he was so proud to be taking me out. we got caught up and had a nice visit. we both needed that! :) today i was back at school for a meeting and i stayed most of the morning visiting with everyone. it was so nice. i was really sad that i didn't get to say good bye due to my fall. i am so lucky to have all that love and support from my coworkers!
and now for the good news! june 24 i am having the procedure done again. this time we are going to costa mesa, california. it will be nice to speak the same language - that was really my only complaint about mexico. i have spoken to one of the doctors at the clinic about possible issues. it is quite possibly a stent issue - it could be too small, in the wrong place in the vein or have clotting inside. all things are fixable he said. i am mad/frustrated that i have to have this procedure done again but i am so happy and lucky that my inlaws are incredibly generous and loving and are willing to pay for me to get it done. hopefully this will be it and i won't be needing a tune up each year!!
i will keep you posted on round 2!!

Hi All.
It's been awhile since I have written. I have been asked how I am feeling since the procedure and if the postitive effects have lasted... if I am being honest, they haven't. I felt great for a good 6 months or so but over the winter I started to regress. My walking took a turn, taking with it my balance and strength. My energy level was the only thing that really maintained but now it is worsening. I am so sad and angry and frustrated BUT I don't regret doing it! and I still tell people that are considering having the procedure to do it! I guess it's all part of the disease right? It affects us all so differently so why wouldn't this procedure. I'm not sure why my symptoms have returned. I have a stent in my azygos vein which can't renarrow and my jugulars were fine in Mexico. It would be kind of weird for them to suddenly narrow over the last 8 months. My father in-law has a theory that the azygos vein is pinched at the end of the stent, essentially causing a blockage... A couple weeks ago when he was telling me about his theory, he also told me he wanted me to return to Mexicao and have the procedure done again and he would pay!! I was shocked at his generosity as they helped pay for the first procedure. I am truly blessed to have such a caring family!! And so now I need to do some research and decide if going back to Mexico is the right decision or should I go somewhere else, maybe in the States and see what they have to say. The last month or so has been tough but I will push through, as I always do. I will keep you posted about the upcoming procedure, wherever it might be. I don't know what they will say or find, but I am hopeful!!