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
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