Thursday, September 2, 2010
Wednesday, September 1, 2010
An Update
hello all!
well it's been a little over a month since i had the procedure! where does the time go?!!? i have been doing good. all of my improvements have stayed, which is awesome! but i haven't noticed any new ones since coming home. i'm trying to be ok with that. of course i want to be back to 'normal' but maybe this is it. i also still have my good days and bad days. my good days are great! and my bad days are the same as before - fatigue, tired heavy legs. it's very frustrating but i have to remember that i still have ms and this is bound to happen. the true test will be this time next week when i return to work. i spent august relaxing and camping. it was great but as with july, it went by too quickly!!
tomorrow i am meeting with a physio therapist who specializes in ms. i'm hoping to get an exercise and stretching routine to maximze my improvements. i've never been one to work out so that in itself is going to be a challenge!
last week i saw my neurologist. i didn't tell him i was having the procedure beforehand. as we were walking from the waiting room to the office, he said "has your walking improved?" i said "maybe" with a smirk. he knew something was up. so we told him we went to mexico to have the procedure. he was cool and skeptical. (never rude or condisending) he looked at the x-ray of the stent, the mri scans and then the disc of the procedure. all the while, not saying much. ricardo and i were explaining things. then ricardo said something about me being able to jump now. he looked up with a smile and said, "well, let's see it" so i jumped. i think i impressed him. ;) he then went on to do his exam. he did point out that i was still showing symptoms to which ricardo replied, "well, she does still have ms." at the end of the exam, he admitted i was showing objective improvements which means, he can measure the improvement. he said my balance and right leg were improved. overall i think the appointment went very well. he wants to see me in 6 months for a follow up. i don't think we convinced him that the procedure was the way to go but i did enlighten him and prove that there is something there.
some of my noticeable improvements:
- still holding ricardo's hand
- i can jump
- wash my hair with my eyes closed without leaning on the wall
- walk up 5 or 6 steps without using the railing (still working on going down)
- climb into ricardo's truck without using my hand to lift my leg up to the step
- get out of bed and start walking (i used to stand up all wobbly, hang onto the wall while my legs did their spasm thing, get my balance and then go)
- more energy - i have been told my voice is even perkier
- balance on one foot
- lift leg up, bent at the hip, to a 90 degree
- improved balance
- my walking is better - i am not throwing my right leg forward with my hip - my back likes this improvement!
i have had many people ask if they can forward on my blog or give my email to someone they know with ms, and i say please do!!! if my experience can help one person then it was all worth it!!!
xo
well it's been a little over a month since i had the procedure! where does the time go?!!? i have been doing good. all of my improvements have stayed, which is awesome! but i haven't noticed any new ones since coming home. i'm trying to be ok with that. of course i want to be back to 'normal' but maybe this is it. i also still have my good days and bad days. my good days are great! and my bad days are the same as before - fatigue, tired heavy legs. it's very frustrating but i have to remember that i still have ms and this is bound to happen. the true test will be this time next week when i return to work. i spent august relaxing and camping. it was great but as with july, it went by too quickly!!
tomorrow i am meeting with a physio therapist who specializes in ms. i'm hoping to get an exercise and stretching routine to maximze my improvements. i've never been one to work out so that in itself is going to be a challenge!
last week i saw my neurologist. i didn't tell him i was having the procedure beforehand. as we were walking from the waiting room to the office, he said "has your walking improved?" i said "maybe" with a smirk. he knew something was up. so we told him we went to mexico to have the procedure. he was cool and skeptical. (never rude or condisending) he looked at the x-ray of the stent, the mri scans and then the disc of the procedure. all the while, not saying much. ricardo and i were explaining things. then ricardo said something about me being able to jump now. he looked up with a smile and said, "well, let's see it" so i jumped. i think i impressed him. ;) he then went on to do his exam. he did point out that i was still showing symptoms to which ricardo replied, "well, she does still have ms." at the end of the exam, he admitted i was showing objective improvements which means, he can measure the improvement. he said my balance and right leg were improved. overall i think the appointment went very well. he wants to see me in 6 months for a follow up. i don't think we convinced him that the procedure was the way to go but i did enlighten him and prove that there is something there.
some of my noticeable improvements:
- still holding ricardo's hand
- i can jump
- wash my hair with my eyes closed without leaning on the wall
- walk up 5 or 6 steps without using the railing (still working on going down)
- climb into ricardo's truck without using my hand to lift my leg up to the step
- get out of bed and start walking (i used to stand up all wobbly, hang onto the wall while my legs did their spasm thing, get my balance and then go)
- more energy - i have been told my voice is even perkier
- balance on one foot
- lift leg up, bent at the hip, to a 90 degree
- improved balance
- my walking is better - i am not throwing my right leg forward with my hip - my back likes this improvement!
i have had many people ask if they can forward on my blog or give my email to someone they know with ms, and i say please do!!! if my experience can help one person then it was all worth it!!!
xo
Wednesday, August 4, 2010
CCSVI treatment setback?
This morning a read an article in the August 4th edition of the Globe and Mail, British Columbia edition. The headline read Studies cast doubt on hotly debated MS treatment. Of course I began to read it. It states, New research from Sweden and Germany provide the first negative medical evidence on Dr. Zamboni’s theory. .. Much of the media attention has been focused on the amazing results of this treatment and how Canadians have no choice but to travel at great personal expense to receive it. I guess it's now the neurologist turn at some media coverage.
The studies were published in the Annals of Neurology. Now there’s a big surprise. The neurologists are against any evidence that would indicate the Multiple Sclerosis may be caused by anything other than a neurological condition. For the most part, the Neurological community is out to disprove Dr. Zamboni’s Hypothesis. They don’t seem to be interested in the truth. The study states that there were no unusual blockages in the veins of MS patients compared with a control group. If this control group is anything like the control group they used in the Buffalo study they may as well not used a control group at all. You see the buffalo study used family members of MS patients as their control. This makes no sense as a genetic link is probable in cases of Multiple Sclerosis.
The study in Germany involved 56 MS patients and 20 healthy patients. The Swedish study used involved 21 MS patients and 20 healthy patients. They call that Science? They accuse Zamboni's original study of being to small and contest it with 2 studies that are smaller?
We just got back from 1 single clinic in Mexico that had treated 55 MS patients where every single one had narrowing! Yes – every single one! We personally met 15 of these patients who all testified they had narrowing and were all seeing improvements in their MS symptoms. There are clinics all over the world improving the lives of MS sufferers. There is no telling if the relief will last or if it is temporary. But it has gone far beyond anything offered by neurologist and drug companies.
In Germany they used ultrasound imaging to determine whether or not there was narrowing of the veins. The Swedish study used involved 21 MS patients and 20 healthy patients and they used MRI. MRI and ultra-sound imaging is known to be inconclusive in the diagnosis of CCSVI. You can’t ultra-sound the azygos vein and the use of this technique on the jugular only helps to give an idea of what is going on. Using these imaging techniques, Azure-Dee showed no signs of narrowing at all. Yet the venogram showed her azygos vein was so twisted and restricted that a balloon angioplasty was unable to get into the narrowed area. The only true way of knowing whether or not there is narrowing is to perform a venogram. It is the gold standard. These 2 studies, performed by neurologists, used techniques that have been proven to have inconclusive results. How can you come to a conclusion based on inconclusiveness? It is either idiocy or deception.
The article can be read here.
Ricardo
The studies were published in the Annals of Neurology. Now there’s a big surprise. The neurologists are against any evidence that would indicate the Multiple Sclerosis may be caused by anything other than a neurological condition. For the most part, the Neurological community is out to disprove Dr. Zamboni’s Hypothesis. They don’t seem to be interested in the truth. The study states that there were no unusual blockages in the veins of MS patients compared with a control group. If this control group is anything like the control group they used in the Buffalo study they may as well not used a control group at all. You see the buffalo study used family members of MS patients as their control. This makes no sense as a genetic link is probable in cases of Multiple Sclerosis.
The study in Germany involved 56 MS patients and 20 healthy patients. The Swedish study used involved 21 MS patients and 20 healthy patients. They call that Science? They accuse Zamboni's original study of being to small and contest it with 2 studies that are smaller?
We just got back from 1 single clinic in Mexico that had treated 55 MS patients where every single one had narrowing! Yes – every single one! We personally met 15 of these patients who all testified they had narrowing and were all seeing improvements in their MS symptoms. There are clinics all over the world improving the lives of MS sufferers. There is no telling if the relief will last or if it is temporary. But it has gone far beyond anything offered by neurologist and drug companies.
In Germany they used ultrasound imaging to determine whether or not there was narrowing of the veins. The Swedish study used involved 21 MS patients and 20 healthy patients and they used MRI. MRI and ultra-sound imaging is known to be inconclusive in the diagnosis of CCSVI. You can’t ultra-sound the azygos vein and the use of this technique on the jugular only helps to give an idea of what is going on. Using these imaging techniques, Azure-Dee showed no signs of narrowing at all. Yet the venogram showed her azygos vein was so twisted and restricted that a balloon angioplasty was unable to get into the narrowed area. The only true way of knowing whether or not there is narrowing is to perform a venogram. It is the gold standard. These 2 studies, performed by neurologists, used techniques that have been proven to have inconclusive results. How can you come to a conclusion based on inconclusiveness? It is either idiocy or deception.
The article can be read here.
Ricardo
Monday, August 2, 2010
Home Sweet Home
well, we are home after an evening layover in van. it actually worked out nicely. we got to have drinks with josh, who picked us up and have breakfast with erin who dropped us off. it was so nice to see them. our one dog welcome home committee was pretty impressive! it was like we were gone for months he was so excited to see us!
i have to say the support over this last week has been incredible! i am truly blessed with the family i was born into, the family i married into and all my friends i have collected along the way. thank you all so much. it was really nice knowing people were thinking of me, praying for me and hoping for the best for me.
now that we are home, i am looking forward to relaxing for the rest of the summer. july was so busy with holidays, calgary and bon jovi, then company and off to mexico! i have nothing planned now until labor day! i am hoping this down time allows my body to adjust to this new-found blood flow and do some healing. i hope that with this healing comes many things - maybe taking the dog for a walk, riding my bike or walking down to cosen's bay. all things i could not do without a huge struggle. maybe one day i'll get my feet back into a pair of heels! woohoo! now that would be exciting! all in all, i am stoked with the improvement i have already seen. this time last week i could not climb into my husband's truck without using my hand to lift my leg up. last night i climbed in, no problem! it's kind of weird because i don't know what i can and can't do now until i try. i got so used to using my hand to lift my leg, i had to consciously not do it to see if i could. i have to relearn my body again. when i can do it, i feel like a kid in a 'look mom! no hands!' kind of way. it's kind of funny. one thing i have truly enjoyed over the last week is holding ricardo's hand again! i has been a very long time since i could take his hand because i wanted to and not his arm because i needed to.
anyway, we are home, i am good and will continue to post updates on my progress.
xo
i have to say the support over this last week has been incredible! i am truly blessed with the family i was born into, the family i married into and all my friends i have collected along the way. thank you all so much. it was really nice knowing people were thinking of me, praying for me and hoping for the best for me.
now that we are home, i am looking forward to relaxing for the rest of the summer. july was so busy with holidays, calgary and bon jovi, then company and off to mexico! i have nothing planned now until labor day! i am hoping this down time allows my body to adjust to this new-found blood flow and do some healing. i hope that with this healing comes many things - maybe taking the dog for a walk, riding my bike or walking down to cosen's bay. all things i could not do without a huge struggle. maybe one day i'll get my feet back into a pair of heels! woohoo! now that would be exciting! all in all, i am stoked with the improvement i have already seen. this time last week i could not climb into my husband's truck without using my hand to lift my leg up. last night i climbed in, no problem! it's kind of weird because i don't know what i can and can't do now until i try. i got so used to using my hand to lift my leg, i had to consciously not do it to see if i could. i have to relearn my body again. when i can do it, i feel like a kid in a 'look mom! no hands!' kind of way. it's kind of funny. one thing i have truly enjoyed over the last week is holding ricardo's hand again! i has been a very long time since i could take his hand because i wanted to and not his arm because i needed to.
anyway, we are home, i am good and will continue to post updates on my progress.
xo
Saturday, July 31, 2010
Heading home
well, i'm almost packed and ricardo is squeezing the last few minutes of sun into his day! he's sitting by the pool, enjoying a cervesa and hoping for just a bit of color on that white skin of his.
i'm tired today, ms tired. i think this humidity is getting to me. before we came someone said something about the humidity here in the summer but i didn't believe them. it's the desert! (and i don't remember it being like this when we got married) anyway, it's gross! and thick! and hard to breathe! anyway, back to the hot and DRY okanagan! :)
so we went on the glass bottom boat tour yesterday... not good!! it was hot! it was humid! there was no breeze! the waves were big and the swells were bigger! i puked! :( so embarrassing but i felt better after!
last night my surgeon, dr. moguel came by the hotel for a visit! how awesome is that! ricardo and i sat in the lobby and chatted with him for about 45 minutes. you don't get that kind of one on one at home!
well i better go shower!
xo
i'm tired today, ms tired. i think this humidity is getting to me. before we came someone said something about the humidity here in the summer but i didn't believe them. it's the desert! (and i don't remember it being like this when we got married) anyway, it's gross! and thick! and hard to breathe! anyway, back to the hot and DRY okanagan! :)
so we went on the glass bottom boat tour yesterday... not good!! it was hot! it was humid! there was no breeze! the waves were big and the swells were bigger! i puked! :( so embarrassing but i felt better after!
last night my surgeon, dr. moguel came by the hotel for a visit! how awesome is that! ricardo and i sat in the lobby and chatted with him for about 45 minutes. you don't get that kind of one on one at home!
well i better go shower!
xo
Friday, July 30, 2010
Ready to come home
yup, i said it. we are ready to come home! it's weird. we came to cabo for a reason and it wasn't to drink and party and be tourists. we have done what we came for and are ready to leave. ricardo was ready to leave on wednesday. don't get us wrong, we love cabo but it's not home and we are done. besides, the humidity is gross! ;) and it's just as hot back home!
it is so amazing here. everyday at breakfast it's like a support group. everyone comes down for breakfast and we catch up on how everyone is doing and improving. it's so nice. we've met some incredible people! if you or someone you know is considering cabo for treatment, definitely stay at the marina fiesta with everyone else.
as for me, i'm a bit tired today. my back is really out so my sleep isn't as restful (another reason i want to go home!) i have not taken my muscle relaxant since we've been here and i think my walking is pretty good - much smoother. ricardo says i'm walking like a lady instead of my usual wide stance, choppy gait. i think the feeling is back in my left hand and my right hand is different, not so tingly. i shaved my legs in the shower today and didn't tip! yay!! my heat sensitivity is noticeably improved .i have to remember to celebrate the small things.
it seems everyone is showing some kind of improvement, no matter how small. it's so amazing! people using a cane instead of a wheelchair, lifting their leg up without using their arm, improved balance and sensation, improved heat tolerance. the list goes on! we have met some people that are quite disabled and still have hope. it's inspiring!
we are off for a glass bottom boat ride with another couple. i hope there's a breeze!!
xo
it is so amazing here. everyday at breakfast it's like a support group. everyone comes down for breakfast and we catch up on how everyone is doing and improving. it's so nice. we've met some incredible people! if you or someone you know is considering cabo for treatment, definitely stay at the marina fiesta with everyone else.
as for me, i'm a bit tired today. my back is really out so my sleep isn't as restful (another reason i want to go home!) i have not taken my muscle relaxant since we've been here and i think my walking is pretty good - much smoother. ricardo says i'm walking like a lady instead of my usual wide stance, choppy gait. i think the feeling is back in my left hand and my right hand is different, not so tingly. i shaved my legs in the shower today and didn't tip! yay!! my heat sensitivity is noticeably improved .i have to remember to celebrate the small things.
it seems everyone is showing some kind of improvement, no matter how small. it's so amazing! people using a cane instead of a wheelchair, lifting their leg up without using their arm, improved balance and sensation, improved heat tolerance. the list goes on! we have met some people that are quite disabled and still have hope. it's inspiring!
we are off for a glass bottom boat ride with another couple. i hope there's a breeze!!
xo
Thursday, July 29, 2010
Wanna see it?
This clip shows the slight narrowing in the jugular and the bunged up azygos. It's important to note that Azure-Dee was on the list for the diagnostic scans at False Creek Medical in Vancouver. The diagnostics are only done on the jugular veins. Just like in the doppler imaging done down here it would've showed little to no narrowing in the jugular. That means we most likely wouldn't have pursued having the procedure done at all. It's a good thing we didn't' get in to False Creek Med!!!
http://www.youtube.com/watch?v=ggktj_mxRgw
Enjoy.
Ricardo
http://www.youtube.com/watch?v=ggktj_mxRgw
Enjoy.
Ricardo
Lazy Day
yesterday was a much needed lazy day after everything we went through on monday and tuesday! we laid by the pool and got some sun. it was so nice!
as for me, i'm feeling good. my back is out so that's really annoying! but as far as ms goes, i feel good. my balance is noticeably better. my legs feel steadier. after a day in the sun i was tired but that was from the sun. it wasn't ms fatigue. there is a difference! right now i am still laying in bed so i'm not sure if i have any new improvements from yesterday. ;)
we tried to upload the procedure but it didn't work. we'll probably try again later. it's pretty cool.
we hear the national re-aired an ms story on ginger macqueen. that story is what convinced me this is real and i needed to seriously consider having it done.
if you or someone you know is considering this procedure, i say do it and do it now!! time's a tickin'!!
we are off to breakfast and to find out how the people who had the procedure done yesterday faired.
if you have any questions let me know in the comment section and i'll answer in the next blog.
adios
as for me, i'm feeling good. my back is out so that's really annoying! but as far as ms goes, i feel good. my balance is noticeably better. my legs feel steadier. after a day in the sun i was tired but that was from the sun. it wasn't ms fatigue. there is a difference! right now i am still laying in bed so i'm not sure if i have any new improvements from yesterday. ;)
we tried to upload the procedure but it didn't work. we'll probably try again later. it's pretty cool.
we hear the national re-aired an ms story on ginger macqueen. that story is what convinced me this is real and i needed to seriously consider having it done.
if you or someone you know is considering this procedure, i say do it and do it now!! time's a tickin'!!
we are off to breakfast and to find out how the people who had the procedure done yesterday faired.
if you have any questions let me know in the comment section and i'll answer in the next blog.
adios
Wednesday, July 28, 2010
Woo Hoo!!
hello! hello!
sorry i have not been blogging for a couple days but i was a little busy! ;) looks like ricardo kept you up to speed!
wow! what an interesting, stressful, emotional, frustrating, painful, tiring couple of days!! i think i have run the gamut of emotion! monday was a long day of hurry up and wait. it was hard to remember we are on 'mexican time' around here. they said my procedure would be at 12. i didn't get in till 4 - that's mexican time for you. we purposely left out the info about the stent in the blog because i wanted to tell my mom personally, not in a blog. she was super freaked out about the stent and really didn't want me to have one. ricardo talked to her last night and she took it rather well! it truly was a necessity as the dr. couldn't even get the balloon in there to try and open it so the stent was needed. i did not sleep well on monday night as i was having pain and trouble breathing deeply. tuesday we went back to the hospital to make sure everything was ok. it was! some rest, food, iv fluids and pain meds made the day better. last night i felt great! really!! i did. it's so backwards. i should have felt like crap after the procedure, stress, and lack of sleep but i felt good, quite alert actually. word travels fast around here. there about 10 other couples here for the procedure. when i walked up to the group last night, it truly seemed that everyone was happy and relieved i was doing so much better. it's kind of weird. i just met these people over the last couple of days and we are like a little family! really cool.
i slept really good last night and am feeling great today. i am seeing improvement!!! it's so crazy! my balance is noticeably better. after chatting in the heat for about 15 minutes i stood with my feet together, arms straight out and closed my eyes and i did not tip over, at all!!!!!!!!!!! i should have landed on my face (if ricardo didn't catch me in time!) my walking is bit more fluid and ricardo and i held hands today instead of me holding his arm for support! that was really nice! :) we are trying to stay realistic and celebrate the small things. any change is good change!
today is going to be a relaxing day by the pool. maybe tomorrow we'll venture out and see some sights. we'll see.
thank you all again for thinking of me and keeping me in your prayers.
xo
sorry i have not been blogging for a couple days but i was a little busy! ;) looks like ricardo kept you up to speed!
wow! what an interesting, stressful, emotional, frustrating, painful, tiring couple of days!! i think i have run the gamut of emotion! monday was a long day of hurry up and wait. it was hard to remember we are on 'mexican time' around here. they said my procedure would be at 12. i didn't get in till 4 - that's mexican time for you. we purposely left out the info about the stent in the blog because i wanted to tell my mom personally, not in a blog. she was super freaked out about the stent and really didn't want me to have one. ricardo talked to her last night and she took it rather well! it truly was a necessity as the dr. couldn't even get the balloon in there to try and open it so the stent was needed. i did not sleep well on monday night as i was having pain and trouble breathing deeply. tuesday we went back to the hospital to make sure everything was ok. it was! some rest, food, iv fluids and pain meds made the day better. last night i felt great! really!! i did. it's so backwards. i should have felt like crap after the procedure, stress, and lack of sleep but i felt good, quite alert actually. word travels fast around here. there about 10 other couples here for the procedure. when i walked up to the group last night, it truly seemed that everyone was happy and relieved i was doing so much better. it's kind of weird. i just met these people over the last couple of days and we are like a little family! really cool.
i slept really good last night and am feeling great today. i am seeing improvement!!! it's so crazy! my balance is noticeably better. after chatting in the heat for about 15 minutes i stood with my feet together, arms straight out and closed my eyes and i did not tip over, at all!!!!!!!!!!! i should have landed on my face (if ricardo didn't catch me in time!) my walking is bit more fluid and ricardo and i held hands today instead of me holding his arm for support! that was really nice! :) we are trying to stay realistic and celebrate the small things. any change is good change!
today is going to be a relaxing day by the pool. maybe tomorrow we'll venture out and see some sights. we'll see.
thank you all again for thinking of me and keeping me in your prayers.
xo
Tuesday, July 27, 2010
Day 1 was crazy!
Okay. So. Let's start with a little back story and then we will jump back to where the last post left off.
Remember how the right azygos vein was dramatically restricted? The part we accidentally on purpose left out was that it was so bad that it was impossible to get the balloon in to do the angioplasty. The only thing they could do to open it up was to use a stent. We were told that there was a slight possiblity that this would be necessary and that it would cost $3,000. Azure-Dee and I talked about it ahead of time and decided that if she needed one to go ahead and get it. Less than 10% of patients here have needed one. So when they failed with the angioplasty they asked her if she would like them to proceed with the stent she gave them the go ahead. Stents are made for arteries not veins so it wasn't exactly an easy decision. But the reason we are here is to open up restricted blood vessels. In the cases of extreme narrowing where angioplasty was performed many times there has been a re-narrowing of the veins. With the stent that won't happen.
Let's now jump forward to the chest pains. The pains in the chest were caused by the procedure and installation of the stent itself. The pain seemed to get worse through the night. In the morning I called the surgeon on his cell phone and he told us to come into the hospital. As soon as we walked in the lobby he met us and showed us in. With some fluids and pain meds the pain was under control and x-ray showed that the stent was still where it belonged.
Okay now lets talk symptoms. The first thing that was noticed was last night with the warm feet. Then this morning the leg thing which I described in the last post, and then came the different sensations with the numbness in the right hand.
In the neurological evaluation this evening it became very clear that she had much better balance and more strength in her right leg. Yesterday when she sat on the edge of the bed put both arms straight out in front of her and closed her eyes she immediately tipped over. The same test while standing with her feet together it had the same result. Tonight however when she sat on the edge of the bed, put both arms straight out and closed her eyes she sat still. I'm pretty sure my eyes popped out of my head. She opened her eyes and looked at me with a shocked look on her face and said "I can do it! I didn't tip!" Then standing she was able to stand with her feet together with out major wabbles for quite a few seconds before opening her eyes to help with her balance. It was truly amazing for me to see.
One thing you need to understand about MS sufferers is that any form of stress on the body makes the symptoms much worse. So here we are with an MS patient who had a horrible sleep, had in invasive procedure about 12 hours before, had been experiencing pain described as and elephant was standing on her chest, and she was better than before. That is impossible. That's not how it works. She should not have been able to do things that she hasn't been able to do for quite some time. Her walking is more balanced and fluid as well! I saw it with my own eyes and I still have a hard time believing it. Is she ready to tap dance or walk briskly? no. But to see signs of improvement however small they may seem to some is remarkable.
MS has been all about the unknown, and it still is. But now it's different. There is new hope. Before the unknown was how bad will she get and how long will it take? Now the unknown is how good can she get, how long will it take, and how long will it last? There is new hope and I like it.
Right now Azure-Dee is sleeping. I am pretty sure you will get to hear directly from her tomorrow.
Thanks again for your support. Your messages and kind words mean a lot to her so please keep them coming.
Ricardo
Remember how the right azygos vein was dramatically restricted? The part we accidentally on purpose left out was that it was so bad that it was impossible to get the balloon in to do the angioplasty. The only thing they could do to open it up was to use a stent. We were told that there was a slight possiblity that this would be necessary and that it would cost $3,000. Azure-Dee and I talked about it ahead of time and decided that if she needed one to go ahead and get it. Less than 10% of patients here have needed one. So when they failed with the angioplasty they asked her if she would like them to proceed with the stent she gave them the go ahead. Stents are made for arteries not veins so it wasn't exactly an easy decision. But the reason we are here is to open up restricted blood vessels. In the cases of extreme narrowing where angioplasty was performed many times there has been a re-narrowing of the veins. With the stent that won't happen.
Let's now jump forward to the chest pains. The pains in the chest were caused by the procedure and installation of the stent itself. The pain seemed to get worse through the night. In the morning I called the surgeon on his cell phone and he told us to come into the hospital. As soon as we walked in the lobby he met us and showed us in. With some fluids and pain meds the pain was under control and x-ray showed that the stent was still where it belonged.
Okay now lets talk symptoms. The first thing that was noticed was last night with the warm feet. Then this morning the leg thing which I described in the last post, and then came the different sensations with the numbness in the right hand.
In the neurological evaluation this evening it became very clear that she had much better balance and more strength in her right leg. Yesterday when she sat on the edge of the bed put both arms straight out in front of her and closed her eyes she immediately tipped over. The same test while standing with her feet together it had the same result. Tonight however when she sat on the edge of the bed, put both arms straight out and closed her eyes she sat still. I'm pretty sure my eyes popped out of my head. She opened her eyes and looked at me with a shocked look on her face and said "I can do it! I didn't tip!" Then standing she was able to stand with her feet together with out major wabbles for quite a few seconds before opening her eyes to help with her balance. It was truly amazing for me to see.
One thing you need to understand about MS sufferers is that any form of stress on the body makes the symptoms much worse. So here we are with an MS patient who had a horrible sleep, had in invasive procedure about 12 hours before, had been experiencing pain described as and elephant was standing on her chest, and she was better than before. That is impossible. That's not how it works. She should not have been able to do things that she hasn't been able to do for quite some time. Her walking is more balanced and fluid as well! I saw it with my own eyes and I still have a hard time believing it. Is she ready to tap dance or walk briskly? no. But to see signs of improvement however small they may seem to some is remarkable.
MS has been all about the unknown, and it still is. But now it's different. There is new hope. Before the unknown was how bad will she get and how long will it take? Now the unknown is how good can she get, how long will it take, and how long will it last? There is new hope and I like it.
Right now Azure-Dee is sleeping. I am pretty sure you will get to hear directly from her tomorrow.
Thanks again for your support. Your messages and kind words mean a lot to her so please keep them coming.
Ricardo
Day 1
We are back in the hospital right now, mostly precautionary. Azure-Dee was experiencing chest pain that grew stronger through the night. I called the Doctor on his cell phone and he met us in the lobby as soon as we walked in the door. They hooked her up to the IV and administered some pain meds to control the pain. She is awaiting an x-ray just to confirm that everything is okay.
She slept long through the night but not very well so she is still quite tired. But how about some good news? The numbness in her right hand hasn't fully left but she thinks she has regained some sensation! Also, picture this. You're laying on your back in bed. You bend your knees bringing your heels toward your butt. Kinda like you're getting ready to do a ab crunch or sit-up. Normally when she would do this her legs would want to tip over so she would sort of prop then up against each other. This morning she said "look at this, my legs aren't wobbling." Hopefully with more rest we can have this chest pain figured out and see more signs of continued improvement.
There was supposed to be a neurological re-assessment today that will likely be put of until tomorrow.
She slept long through the night but not very well so she is still quite tired. But how about some good news? The numbness in her right hand hasn't fully left but she thinks she has regained some sensation! Also, picture this. You're laying on your back in bed. You bend your knees bringing your heels toward your butt. Kinda like you're getting ready to do a ab crunch or sit-up. Normally when she would do this her legs would want to tip over so she would sort of prop then up against each other. This morning she said "look at this, my legs aren't wobbling." Hopefully with more rest we can have this chest pain figured out and see more signs of continued improvement.
There was supposed to be a neurological re-assessment today that will likely be put of until tomorrow.
Monday, July 26, 2010
A long day.
As we were warned by those who had gone before us, today was a long day. We just got back to the hotel. Azure-Dee is very tired and is resting. The procedure didn't really go as we had anticipated; at least not as I had anticipated. The doppler imaging showed that her jugular veins were near normal. Not at all what we were expecting. At that point we couldn't help but wonder, is Azure-Dee one of that small percentage without the narrowing? The non-invasive diagnosis has been known to be somewhat inconclusive. I began to cling to that hope that they would find something during the veinography. They did.
They found minor narrowing of the right jugular. From the front it looked normal but the side view showed it had flattened out. The right azygos vein had severe narrowing and twisting. It was described as being all knotted up. After the procedure you can see the blood flowing freely through. (We will see about posting a video in the next few days)
Azure-Dee wasn't one of the people who came off the table ready to tap dance. There was however one near immediate noticeable change. Her feet were no longer cold. I asked "when was the last time your feet weren't cold?" her reply was "When I was at the beach in 35 degree heat." That alone is quite remarkable. A relief of a symptom so quickly.
We don't know what to expect in the upcoming days. We are hopefull that there will be more results as the days unfold. Some people have been over-doing it when they get more energy or better mobility etc. We don't want that to happen so the plan is just to rest as much as possible the next few days.
I am sure that tomorrow you will be able to hear from Azure-Dee herself when she has more energy. Thanks again for all of your support. Time for me to enjoy a cerveza.
Ricardo
They found minor narrowing of the right jugular. From the front it looked normal but the side view showed it had flattened out. The right azygos vein had severe narrowing and twisting. It was described as being all knotted up. After the procedure you can see the blood flowing freely through. (We will see about posting a video in the next few days)
Azure-Dee wasn't one of the people who came off the table ready to tap dance. There was however one near immediate noticeable change. Her feet were no longer cold. I asked "when was the last time your feet weren't cold?" her reply was "When I was at the beach in 35 degree heat." That alone is quite remarkable. A relief of a symptom so quickly.
We don't know what to expect in the upcoming days. We are hopefull that there will be more results as the days unfold. Some people have been over-doing it when they get more energy or better mobility etc. We don't want that to happen so the plan is just to rest as much as possible the next few days.
I am sure that tomorrow you will be able to hear from Azure-Dee herself when she has more energy. Thanks again for all of your support. Time for me to enjoy a cerveza.
Ricardo
Here we go here we go here we go. Here we go here we go here we go-o.
Turns out we didn't need the alarm to wake us up this morning. Weird. I did a quick email, facebook, blog check and was quickly overwhelmed by the support from so many people. Then the reality of what we are doing here really sunk in.
I'm pretty sure I fell asleep while praying last night and then woke up praying. I have no idea what to expect from today and I am trying not to have any expectations. We know this is the right thing to do and that no matter what the outcome we will have no regrets.
The plan is to have all the testing and procedure done today. There are 2 other ladies going today as well. One from Vancouver and the other is a part-time resident of Kelowna. From the sounds of some of the people who have already gone through, they do things on "Mexican Time" here so we should be prepared for a long day and a change of schedule. Funny thing about that is I have never been to a hospital in Canada where things were running on time other than maybe the end of visiting hours.
We will do our best to keep you up to speed. I might even turn on my phone and post on my new twitter account frostbackbacon as the day goes on, I hope it won't cost to much. If it does Shadow will pay for it anyway. Right big Tod?
We are off for some breakfast.
Ricardo
I'm pretty sure I fell asleep while praying last night and then woke up praying. I have no idea what to expect from today and I am trying not to have any expectations. We know this is the right thing to do and that no matter what the outcome we will have no regrets.
The plan is to have all the testing and procedure done today. There are 2 other ladies going today as well. One from Vancouver and the other is a part-time resident of Kelowna. From the sounds of some of the people who have already gone through, they do things on "Mexican Time" here so we should be prepared for a long day and a change of schedule. Funny thing about that is I have never been to a hospital in Canada where things were running on time other than maybe the end of visiting hours.
We will do our best to keep you up to speed. I might even turn on my phone and post on my new twitter account frostbackbacon as the day goes on, I hope it won't cost to much. If it does Shadow will pay for it anyway. Right big Tod?
We are off for some breakfast.
Ricardo
Sunday, July 25, 2010
CCSVI Info
I am sure that many of you see the letters CCSVI and haven't a clue what it actually means. Here are a couple links to fill in the blanks about this hypothesis that is resulting in either the craziest most unlikely placebo effect in the history of mankind, or craziest most effective treatment of Multiple Sclerosis; a disease that has been always thought of as strictly a neurological condition.
http://www.youtube.com/watch?v=C_RXs5dPh6E
http://www.ctv.ca/CTVNews/WFive/20091120/W5_liberation_091121/
http://en.wikipedia.org/wiki/Chronic_cerebrospinal_venous_insufficiency
Thanks for all the support. It means the world to us. Who knows. Next time you see us we just might be doing this... http://www.youtube.com/watch?v=Ik-RsDGPI5Y
Goodnight!
xo Ricardo
http://www.youtube.com/watch?v=C_RXs5dPh6E
http://www.ctv.ca/CTVNews/WFive/20091120/W5_liberation_091121/
http://en.wikipedia.org/wiki/Chronic_cerebrospinal_venous_insufficiency
Thanks for all the support. It means the world to us. Who knows. Next time you see us we just might be doing this... http://www.youtube.com/watch?v=Ik-RsDGPI5Y
Goodnight!
xo Ricardo
An Overwhelming Breakfast!!
So we went down for our complimentary breakfast this morning, and as we entered the restaurant area, i saw some ladies at a table. they smiled and seemed to be checking me out... not in the 'omg, i can't believe she's wearing that kind of way' but checking me out none the less. when i got up to get some juice, one of them called me over and asked if i was here for the procedure. turns out they spotted another ms-er when i walked into the restaurant! in the next 10 minutes or so, we met 5 people that had the procedure done earlier this week. all were seeing results of some kind!!! it was so overwhelming and exciting hearing first hand how these people are feeling just days after their procedure! one of the men had not stood unassisted in over 10 years and when his procedure was done, he got up off the table by himself!!! unbelievable!! we are so excited and hopeful but at the same time trying to remain realistic that it's going to be different for everyone!
tomorrow i go to the hospital with 2 other ladies. i am the least disabled (one in a wheelchair, one with a brace) so it will be amazing to see their results over the next week too!
well we are off to switch rooms. our room itself is great but it's on the second floor facing a lot with garbage! we are moving to the first floor hopefully poolside!!
xo
ciao
tomorrow i go to the hospital with 2 other ladies. i am the least disabled (one in a wheelchair, one with a brace) so it will be amazing to see their results over the next week too!
well we are off to switch rooms. our room itself is great but it's on the second floor facing a lot with garbage! we are moving to the first floor hopefully poolside!!
xo
ciao
Saturday, July 24, 2010
We made it!
We are here. whew. that was a long day - at the kelowna airport by 7 and didn't get to cabo till 4... i'm pooped! we met with andres, the ccsvi coordinator. he's super nice and totally put us at ease, answering all our questions. I am scheduled to be at the hospital at 8:30am monday morning for an mri, doppler ultrasound and a neurological assessment... and then... drum roll please... the procedure!!!!!!!! :) what a good day! I wish all mondays were that good! we've already met 2 other ladies and their spouses, all arrived today and having the procedure on monday. we also met a guy who has already had it done and said he is feeling amazing!!!! i had shivers! off to dinner! xo
Azure-Dee
Ricardo here...
One of the things that I'd like to point out so far is that Andres said that they have done 46 patients to date. Every single one had a narrowing, blockage, or twisting and every single one saw improvements. That was encouraging. If this is a placebo, it's the best placebo ever. I am still quite anxious to see what the upcoming days, weeks and months will bring. It still hasn't quite sunk in for me yet.
Ricardo.
Azure-Dee
Ricardo here...
One of the things that I'd like to point out so far is that Andres said that they have done 46 patients to date. Every single one had a narrowing, blockage, or twisting and every single one saw improvements. That was encouraging. If this is a placebo, it's the best placebo ever. I am still quite anxious to see what the upcoming days, weeks and months will bring. It still hasn't quite sunk in for me yet.
Ricardo.
Friday, July 23, 2010
CCSVI - Cabo San Lucas
Many friends have been asking for updates on Azure-Dee's health and her upcoming CCSVI procedure in Mexico. We have created this site to keep everyone up to speed on what's happening. We will be making journal entries as this process unfolds.
We have also had many inquiries about fundraising for the procedure as it is very expensive and insurance won't cover any of the costs. We are not doing a fundraising event as we don't want to wait any longer for this procedure and planning a fundraiser takes time. In spite of that, we have received some donations to help with the medical costs and the costs associated with getting the treatment. We are humbly grateful.
We have also had many inquiries about fundraising for the procedure as it is very expensive and insurance won't cover any of the costs. We are not doing a fundraising event as we don't want to wait any longer for this procedure and planning a fundraiser takes time. In spite of that, we have received some donations to help with the medical costs and the costs associated with getting the treatment. We are humbly grateful.
On July 15th, 2003, Azure-Dee was diagnosed with MS, a disease with no known cause or cure. This diagnosis would forever change her life. Daily injections may be slowing the progression of the disease but there is no known cure and until recently, no available treatment of the symptoms.
In the fall of 2009, the media aired a story about Chronic Cerebral Spinal Veinous Insufficiency, as examined by Dr. Paolo Zamboni of Italy. CCSVI is the blockage or twisting of the jugular veins that drain the blood from the brain. This can cause a reflux of blood to travel backwards into the brain, leaving iron deposits in the grey matter, essentially causing brain damage.
To treat this condition, an angioplasty is done in the jugular veins of the neck and upper chest. The angioplasty opens, or balloons, the narrowed vein, allowing the blood to drain smoothly. This process has been having remarkable and unparalleled results. Symptoms are being relieved and people are getting their lives back.
Over the past few months, the MS world has been flipped on it's ear with people demanding access to this treatment. At this time, it is considered experimental in Canada and is thus unavailable. MS patients are travelling the world over to get relief.
On July 26th, 2010, Azure-Dee will be in the hospital in Cabo San Lucas, Mexico, for her chance at this life changing procedure.
In the fall of 2009, the media aired a story about Chronic Cerebral Spinal Veinous Insufficiency, as examined by Dr. Paolo Zamboni of Italy. CCSVI is the blockage or twisting of the jugular veins that drain the blood from the brain. This can cause a reflux of blood to travel backwards into the brain, leaving iron deposits in the grey matter, essentially causing brain damage.
To treat this condition, an angioplasty is done in the jugular veins of the neck and upper chest. The angioplasty opens, or balloons, the narrowed vein, allowing the blood to drain smoothly. This process has been having remarkable and unparalleled results. Symptoms are being relieved and people are getting their lives back.
Over the past few months, the MS world has been flipped on it's ear with people demanding access to this treatment. At this time, it is considered experimental in Canada and is thus unavailable. MS patients are travelling the world over to get relief.
On July 26th, 2010, Azure-Dee will be in the hospital in Cabo San Lucas, Mexico, for her chance at this life changing procedure.
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