Sunday, January 18, 2015
Wednesday, January 14, 2015
The quest begins / Erin Hunter.
The quest begins / Erin Hunter.: Three young bears of different species--one black, one polar, and one grizzly--travel on a perilous quest to the Northern Lights, escorting a shape-shifting grizzly cub whose destiny will affect them all.
The quest begins / Erin Hunter.
The quest begins / Erin Hunter.: Three young bears of different species--one black, one polar, and one grizzly--travel on a perilous quest to the Northern Lights, escorting a shape-shifting grizzly cub whose destiny will affect them all.
Friday, October 24, 2014
All The Things I Wish I Could Say...
"How are you? You look great!" Pause & think, "Moron! God! The only thing that I want to do at this very minute is crawl into bed & hibernate there indefinitely." Instead the answer that leaves my mouth is, "thanks! Things are great!" Why do I respond this way? Because no one really cares if a person is tired, or depressed, or if a progressive disease has robbed them of their dreams. They often don't even know what MS is! How do you explain fatigue that has become so crippling that death would be an easier alternative than constantly pretending?
Ok! Enough with the dark & gloomy! Let's try again, "How are you?" Well a lot has happened since my last blog in 2010. CCSVI was a miracle for me until August of 2013. I had no fatigue, no vertigo, & I no longer needed disease modifying drugs! I felt great! Not only did I have two young children, I worked as a nurse for a private company, volunteered at various organizations, & worked out 3-5 times per week. Unfortunately due to federal budget cuts, our family was transferred from Manitoba to Alberta in May of 2013. I started a full-time job in a very busy emergency department working with children with mental health & addiction concerns. I loved it! But as you can imagine the emotional & physical stress of such a job, a relocation, & caring for 2 young girls took my health downwards. By October of 2013, I was taken off of work & placed on Tecfidera. I no longer have feeling in my left leg, I experience severe facial & leg pain, & the fatigue...!!!
At this point, I'm on long term disability & will likely never return to work. I'm angry that a disease of all things has taken away my dreams & aspirations! I worked hard to become a specialized nurse! I had a nearly perfect GPA & scholarships that paid my way through university all while just having been newly diagnosed with MS!! I was excellent at my job & I know I made significant differences in other people's lives. It hurts the hell out of me when people comment, "well at least you can stay home with the girls. I would love to be able to not have to work." How does one with MS respond to such a statement?" "Ya, I love that I can't fulfill my passion anymore, duh!" It's one thing to personally choose a new normal vs being forced into a new normal.
Don't get me wrong, in all of the above-mentioned misery, I do count my blessings. I am beyond blessed to have an amazing neurologist, psychologist, & family physician who genuinely care about the best interests of me & my family. I am thankful that my husband is so helpful & understands when "I just can't..." I am thankful that because I'm not working, I do have a bit more energy that I can give to my kids.
Well those are the things I wish I could say & I've said them! What do you wish that you could tell someone when they just don't get it?
Ok! Enough with the dark & gloomy! Let's try again, "How are you?" Well a lot has happened since my last blog in 2010. CCSVI was a miracle for me until August of 2013. I had no fatigue, no vertigo, & I no longer needed disease modifying drugs! I felt great! Not only did I have two young children, I worked as a nurse for a private company, volunteered at various organizations, & worked out 3-5 times per week. Unfortunately due to federal budget cuts, our family was transferred from Manitoba to Alberta in May of 2013. I started a full-time job in a very busy emergency department working with children with mental health & addiction concerns. I loved it! But as you can imagine the emotional & physical stress of such a job, a relocation, & caring for 2 young girls took my health downwards. By October of 2013, I was taken off of work & placed on Tecfidera. I no longer have feeling in my left leg, I experience severe facial & leg pain, & the fatigue...!!!
At this point, I'm on long term disability & will likely never return to work. I'm angry that a disease of all things has taken away my dreams & aspirations! I worked hard to become a specialized nurse! I had a nearly perfect GPA & scholarships that paid my way through university all while just having been newly diagnosed with MS!! I was excellent at my job & I know I made significant differences in other people's lives. It hurts the hell out of me when people comment, "well at least you can stay home with the girls. I would love to be able to not have to work." How does one with MS respond to such a statement?" "Ya, I love that I can't fulfill my passion anymore, duh!" It's one thing to personally choose a new normal vs being forced into a new normal.
Don't get me wrong, in all of the above-mentioned misery, I do count my blessings. I am beyond blessed to have an amazing neurologist, psychologist, & family physician who genuinely care about the best interests of me & my family. I am thankful that my husband is so helpful & understands when "I just can't..." I am thankful that because I'm not working, I do have a bit more energy that I can give to my kids.
Well those are the things I wish I could say & I've said them! What do you wish that you could tell someone when they just don't get it?
Wednesday, June 30, 2010
One Month Post Liberation Update
Hello to all of my faithful followers!
I'm so sorry for not writing an update sooner, but as you all know, life is crazy busy!
It has now been five weeks post liberation and I am happy to report that things are going well. I have only had a half of a day with mild vertigo. I used to experience vertigo at least twice a week and it was severe enough that I would need to crawl on the ground. I would also constantly vomit from the vertigo. As such, since coming back from Egypt I have gained seven pounds! The vertigo diet is no longer in effect! I have had no headaches and no neuropathic pain. I do continue to struggle with finding words, and experience some mild numbness on the left side of my face. I feel that my energy levels have improved, however I find that my body and my MS are affected by hormonal levels which ultimately caused about a week of short-lived crushing fatigue.
Many people ask me if I am afraid that my veins will re-close and ask me what I will do if they do re-close. There is a lot of variation on the re-stenosis rate ranging from 20-50%, however I have absolutely no control over if my veins will re-close. I have made the decision that instead of worrying about if my veins will become narrowed again, I will put my energy instead into believing that they won't re-stenose. At this point in time in my life, I feel that I need to take comfort and be surrounded by people who are optimistic and hopeful otherwise it is far too easy to go down the "slippery slope" of despair and doom and gloom. If I continue to feel good, then I will not even think of the chance of re-stenosis.
I was completely amazed this past week after learning that a friend of mine with primary progressive MS and who was liberated in Costa Rica is doing amazingly well. I can say with no word of a lie or embellishment, that this young man struggled to walk and had severe ataxia. His MS course was quickly progressing and I watched him and his family struggle through every single day dreading what the next morning would bring in terms of loss of function. Until people walk in these shoes they truly will never understand the true meaning of despair and loss of control. I am happy to report though, that my friend is doing fantastic. He is able to walk longer periods without his cane on a daily basis, his ataxia has improved to the point that he can do a deep knee bend. I truthfully have made CCSVI skeptics into believers when I have shared the video of my friend before the procedure and post-procedure. If this is a placebo effect, then my friend is the best actor I have EVER seen.
So there is no guarantee that this procedure will work miracles for every person with MS, but a large portion of the recipients are reporting at least a mild degree of improvement in some aspect in their lives. I continue to fight, hope, and pray that CCSVI diagnosis and treatment WILL be offered in our province.
Take care, stay hopeful, and give your loved ones an extra hug today.
Nicole
I'm so sorry for not writing an update sooner, but as you all know, life is crazy busy!
It has now been five weeks post liberation and I am happy to report that things are going well. I have only had a half of a day with mild vertigo. I used to experience vertigo at least twice a week and it was severe enough that I would need to crawl on the ground. I would also constantly vomit from the vertigo. As such, since coming back from Egypt I have gained seven pounds! The vertigo diet is no longer in effect! I have had no headaches and no neuropathic pain. I do continue to struggle with finding words, and experience some mild numbness on the left side of my face. I feel that my energy levels have improved, however I find that my body and my MS are affected by hormonal levels which ultimately caused about a week of short-lived crushing fatigue.
Many people ask me if I am afraid that my veins will re-close and ask me what I will do if they do re-close. There is a lot of variation on the re-stenosis rate ranging from 20-50%, however I have absolutely no control over if my veins will re-close. I have made the decision that instead of worrying about if my veins will become narrowed again, I will put my energy instead into believing that they won't re-stenose. At this point in time in my life, I feel that I need to take comfort and be surrounded by people who are optimistic and hopeful otherwise it is far too easy to go down the "slippery slope" of despair and doom and gloom. If I continue to feel good, then I will not even think of the chance of re-stenosis.
I was completely amazed this past week after learning that a friend of mine with primary progressive MS and who was liberated in Costa Rica is doing amazingly well. I can say with no word of a lie or embellishment, that this young man struggled to walk and had severe ataxia. His MS course was quickly progressing and I watched him and his family struggle through every single day dreading what the next morning would bring in terms of loss of function. Until people walk in these shoes they truly will never understand the true meaning of despair and loss of control. I am happy to report though, that my friend is doing fantastic. He is able to walk longer periods without his cane on a daily basis, his ataxia has improved to the point that he can do a deep knee bend. I truthfully have made CCSVI skeptics into believers when I have shared the video of my friend before the procedure and post-procedure. If this is a placebo effect, then my friend is the best actor I have EVER seen.
So there is no guarantee that this procedure will work miracles for every person with MS, but a large portion of the recipients are reporting at least a mild degree of improvement in some aspect in their lives. I continue to fight, hope, and pray that CCSVI diagnosis and treatment WILL be offered in our province.
Take care, stay hopeful, and give your loved ones an extra hug today.
Nicole
Saturday, June 12, 2010
Two Weeks Post-Op Update
It has now been two weeks since my liberation procedure in Egypt. I must admit, I thought things were not progressing very well for me over this last week when I suddenly felt very tired and my neck really started to hurt. After a few more days my throat got really sore and I thought to myself, "aha, you're getting sick!" I ended up with strep-throat and let me tell you, I actually felt okay. A little more tired than the week previous but that was it! When I would get sick prior to being liberated, I would literally collapse from the couch to the bed, from the bed to the floor and just pray that the day would end. Today I feel great again. Lots of energy, no pain, no numbness, no headaches.
Because of the strep-throat, I visited my family doctor this past week and provided him with my angioplasty reports and pictures of the procedure. We didn't have a conversation around CCSVI, but he was willing to accept the reports and he is referring me for an ultrasound of my thyroid. I didn't feel defeated this time which was a great feeling. I hope that physicians continue to keep an open mind about this procedure and to explore both sides as objectively as possible.
Family life has been great. My daughter continues to keep me hopping and continues to give me a lot of strength. We have also been greatly enjoying time with our neighbors/friends this week. I honestly don't know what I would do without our very kind and supportive neighborhood. It seems like whenever I am feeling lonely or down, someone will show up at the door with a great big smile and a tomato plant!
Take care everyone.
Because of the strep-throat, I visited my family doctor this past week and provided him with my angioplasty reports and pictures of the procedure. We didn't have a conversation around CCSVI, but he was willing to accept the reports and he is referring me for an ultrasound of my thyroid. I didn't feel defeated this time which was a great feeling. I hope that physicians continue to keep an open mind about this procedure and to explore both sides as objectively as possible.
Family life has been great. My daughter continues to keep me hopping and continues to give me a lot of strength. We have also been greatly enjoying time with our neighbors/friends this week. I honestly don't know what I would do without our very kind and supportive neighborhood. It seems like whenever I am feeling lonely or down, someone will show up at the door with a great big smile and a tomato plant!
Take care everyone.
Friday, June 4, 2010
Important Info From Dr. Simka
I received this info from the doctor in Egypt. Dr. Simka in Poland wrote this. I think the last paragraph speaks for itself:
Our main goal of diagnostic procedures is to find all significant (i.e. impairing the outflow) venous lesions. Consequently, we perform Doppler sonography and MR venography as screening tests. Theoretically, both these examinations are not necessary, but in some patients (~10%) they are very important (anatomical variants, borderline pathology, unoperable lesions). Doppler sonography and MRV are only screening tests, i.e. they reveal that there is a pathology and in most of the cases they predict were the pathology is situated. But they are not 100% accurate. Intraoperative venography is far more reliable, but even this test is not perfect. So a combination of Doppler + MRV + intraoperative venography is better. Now, we think about applying also IVUS (intravenous ultrasonography), but it will substantially increase the cost, so most likely we will use it only in selected cases.
Regarding the treatment, we opt for the most safe and the most efficient treatment, which of course is not possible, since those two parameters don't meet it every case. Balloon angioplasty has already been demonstrated to be very safe in a short time, and most likely safety in long time is also nearly perfect. But balloon angioplasty is not very efficacious. In some cases it doesn't work at all, in the others there are late restenoses. The short-term efficacy of an alternative treatment - stenting is much higher. But long-term efficacy (risk of late occlusion) is not known. Although occluded stent can be opened, but probably not in every case. And of course there are known early complications related to stents, namely the migration, that exclude some anatomic variants from stenting (at least using currently available stents). There is also possible the open repair of the vein, but risk and efficacy of such procedures are not known. Thus, all treatment modalities should be regarded as experimental, with still unknown efficacy and safety. The doctors always try to balance the risk and the efficacy factors, but the best solution is not always possible and is not always chosen (importantly, we don't have data on long term consequences of ballooning or stenting).
Now, what about impact of the treatment for CCSVI on clinical course of MS. Our data indicate that the things are far more complicated than it might be suspected.
1. CCSVI is not an equivalent for MS; most likely, MS = CCSVI + some (probably more than one) other factors
2. Consequently, treating CCSVI does not mean that MS is gone. Most of the patients experience good and bad days following surgery, importantly, during infection, stress, etc. the symptoms usually go back. But the symptoms also go back in a case of restenosis.
3. Treatment of CCSVI does not guarantee improvement. There were some patients (not much, still, they were) who experienced worsening. Most of those patients presented with severly narrowed veins that could not be sufficiently managed with ballooning or stenting, but there were also cases with "perfectly" done surgery. So, a patient can improve after surgery (a majority, especially relapsing remitting patients), but no improvement or even worsening is also possible. A reoperation can improve the symptoms in the latter two groups, but again, not in all cases.
4. Probably, surgery for CCSVI + pharmaceutical treatment will improve outcomes. Try to continue your neurological medication if it were working before surgery.
5. Many patients who suffered from transient worsening of symptoms, improved after inclined bed therapy. You can try it, even if not efficient, at least it is 100% safe6. Postoperative Doppler examination is sometimes puzzling. In most of the patients the flow just after the suregery is still pathologic. Threfore we don't perform it after operation (we don't want to stress the patients). Even after some days there are still flow abnormalities, especially after ballooning. So, we think that patient should look at his/her symptoms first.
And, importantly, current situation when patients must travel thousands of miles to have the treatment is neither normal nor is it safe. At the moment healthcare systems seem to overregulated. It must be changed. Especially, cooperation with neurological community and big universities with access to big public money is pivotal. Surgery is not the only solution, it must be augmented by something else.
Marian Simka >>
Our main goal of diagnostic procedures is to find all significant (i.e. impairing the outflow) venous lesions. Consequently, we perform Doppler sonography and MR venography as screening tests. Theoretically, both these examinations are not necessary, but in some patients (~10%) they are very important (anatomical variants, borderline pathology, unoperable lesions). Doppler sonography and MRV are only screening tests, i.e. they reveal that there is a pathology and in most of the cases they predict were the pathology is situated. But they are not 100% accurate. Intraoperative venography is far more reliable, but even this test is not perfect. So a combination of Doppler + MRV + intraoperative venography is better. Now, we think about applying also IVUS (intravenous ultrasonography), but it will substantially increase the cost, so most likely we will use it only in selected cases.
Regarding the treatment, we opt for the most safe and the most efficient treatment, which of course is not possible, since those two parameters don't meet it every case. Balloon angioplasty has already been demonstrated to be very safe in a short time, and most likely safety in long time is also nearly perfect. But balloon angioplasty is not very efficacious. In some cases it doesn't work at all, in the others there are late restenoses. The short-term efficacy of an alternative treatment - stenting is much higher. But long-term efficacy (risk of late occlusion) is not known. Although occluded stent can be opened, but probably not in every case. And of course there are known early complications related to stents, namely the migration, that exclude some anatomic variants from stenting (at least using currently available stents). There is also possible the open repair of the vein, but risk and efficacy of such procedures are not known. Thus, all treatment modalities should be regarded as experimental, with still unknown efficacy and safety. The doctors always try to balance the risk and the efficacy factors, but the best solution is not always possible and is not always chosen (importantly, we don't have data on long term consequences of ballooning or stenting).
Now, what about impact of the treatment for CCSVI on clinical course of MS. Our data indicate that the things are far more complicated than it might be suspected.
1. CCSVI is not an equivalent for MS; most likely, MS = CCSVI + some (probably more than one) other factors
2. Consequently, treating CCSVI does not mean that MS is gone. Most of the patients experience good and bad days following surgery, importantly, during infection, stress, etc. the symptoms usually go back. But the symptoms also go back in a case of restenosis.
3. Treatment of CCSVI does not guarantee improvement. There were some patients (not much, still, they were) who experienced worsening. Most of those patients presented with severly narrowed veins that could not be sufficiently managed with ballooning or stenting, but there were also cases with "perfectly" done surgery. So, a patient can improve after surgery (a majority, especially relapsing remitting patients), but no improvement or even worsening is also possible. A reoperation can improve the symptoms in the latter two groups, but again, not in all cases.
4. Probably, surgery for CCSVI + pharmaceutical treatment will improve outcomes. Try to continue your neurological medication if it were working before surgery.
5. Many patients who suffered from transient worsening of symptoms, improved after inclined bed therapy. You can try it, even if not efficient, at least it is 100% safe6. Postoperative Doppler examination is sometimes puzzling. In most of the patients the flow just after the suregery is still pathologic. Threfore we don't perform it after operation (we don't want to stress the patients). Even after some days there are still flow abnormalities, especially after ballooning. So, we think that patient should look at his/her symptoms first.
And, importantly, current situation when patients must travel thousands of miles to have the treatment is neither normal nor is it safe. At the moment healthcare systems seem to overregulated. It must be changed. Especially, cooperation with neurological community and big universities with access to big public money is pivotal. Surgery is not the only solution, it must be augmented by something else.
Marian Simka >>
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