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 The vertigo diet is no longer in effect!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
Wednesday, June 30, 2010
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 >>
Thursday, June 3, 2010
One Week Post-Op
It has now been one week since I underwent an angioplasty to improve the circulation of my internal jugular veins and azygos vein. I have noted some improvements. First of all, I feel less fatigued. Today, I woke up at 5:30 AM (before my alarm went off) and drove into work alert. If you recall in my very first blog prior to the procedure, I wrote about driving to work feeling as if I could fall asleep at the wheel. Secondly, I feel warm. My feet actually sweat now. Some of my co-workers who didn’t even know I had the procedure remarked that I looked “really good and rested.”
I also want to mention how truly thankful I am to everyone for their supportive comments and positive thoughts. It really means a lot. I also greatly appreciated when one of our neighbors came over the morning that we arrived back in MB and cut our grass. Our yard is not small, so this was so greatly appreciated! Additionally, a good friend of mine dropped off a full dinner for our family on our first day home. Acts of kindness such as these truly motivate me to be a better person and to appreciate the value of paying it forward. Thank-you, words will never express how truly appreciative I am.
Although I will continue to provide updates as my body heals, I find it hard not to focus on every little pain or muscle jerk. I keep asking myself, “is this the MS, or is it truly a headache etc.?” I have spoken to a few other individuals who were also “liberated” and they too notice that they are consumed with every little thing their body is doing or isn’t doing. I don’t think that this is necessarily helpful in recovery but it is a hard thing to try and ignore.
My “liberation sisters” as we have affectionately named ourselves are also doing remarkably well reporting an increase in energy and physical mobility.
I also want to mention how truly thankful I am to everyone for their supportive comments and positive thoughts. It really means a lot. I also greatly appreciated when one of our neighbors came over the morning that we arrived back in MB and cut our grass. Our yard is not small, so this was so greatly appreciated! Additionally, a good friend of mine dropped off a full dinner for our family on our first day home. Acts of kindness such as these truly motivate me to be a better person and to appreciate the value of paying it forward. Thank-you, words will never express how truly appreciative I am.
Although I will continue to provide updates as my body heals, I find it hard not to focus on every little pain or muscle jerk. I keep asking myself, “is this the MS, or is it truly a headache etc.?” I have spoken to a few other individuals who were also “liberated” and they too notice that they are consumed with every little thing their body is doing or isn’t doing. I don’t think that this is necessarily helpful in recovery but it is a hard thing to try and ignore.
My “liberation sisters” as we have affectionately named ourselves are also doing remarkably well reporting an increase in energy and physical mobility.
Tuesday, June 1, 2010
Home Sweet Home!
After travelling for a total of almost 48 hours, we made it home late last night! My eyes were burning and red from not sleeping for almost 2 whole days! Regardless, we are HOME! I slept for about 8 hours and woke-up feeling refreshed. I woke-up even before my daughter got up!
It was beyond amazing to see my little angel again! While she looked confused expecting to see her grandma, when she saw me, her little face lit right up with a gorgeous smile and a sweet, "Momma!" All morning, she clung onto me like a little monkey and just rocked back and forth in my lap. This is true and pure love.
As for what I am going to do post-procedure...I am going to look after myself. I decided to quit drinking coffee as well as I will avoid consuming all caffeinated drinks/food as caffeine is a vasoconstricter. I plan to join a rehabilitative gym for not only my body but also my mind and I plan to take more time to be "present" with my family. For the last while, my mind has been so consumed by CCSVI that I was doing everything at a level that was not 100%. I will still focus a lot of my energy towards working with the CCSVI Manitoba Awareness group to ensure CCSVI treatment in MB but I will dedicate these hours when my daughter is asleep or when my husband is busy with work etc.
I feel that I have been reminded that life and love should not be taken for granted. I feel very blessed, very lucky, and so very thankful to everyone in my life.
It was beyond amazing to see my little angel again! While she looked confused expecting to see her grandma, when she saw me, her little face lit right up with a gorgeous smile and a sweet, "Momma!" All morning, she clung onto me like a little monkey and just rocked back and forth in my lap. This is true and pure love.
As for what I am going to do post-procedure...I am going to look after myself. I decided to quit drinking coffee as well as I will avoid consuming all caffeinated drinks/food as caffeine is a vasoconstricter. I plan to join a rehabilitative gym for not only my body but also my mind and I plan to take more time to be "present" with my family. For the last while, my mind has been so consumed by CCSVI that I was doing everything at a level that was not 100%. I will still focus a lot of my energy towards working with the CCSVI Manitoba Awareness group to ensure CCSVI treatment in MB but I will dedicate these hours when my daughter is asleep or when my husband is busy with work etc.
I feel that I have been reminded that life and love should not be taken for granted. I feel very blessed, very lucky, and so very thankful to everyone in my life.
Sunday, May 30, 2010
The Things I Learned In Egypt
We are now embarking on our journey home to Manitoba from Egypt.
I would like to share a few important life lessons I have learned on this journey with everyone:
1) As a fair skinned, blonde, blue eyed, female I experienced what it is like to be stereotyped against. It wasn’t until the local females grew to know me as a person that they became more accepting of me. The males LOVED me albeit I encountered countless “cat calls” and some very obscene gestures. It was a very different perspective being the anomaly. Having had this experience I hope and believe that I will be a lot more sensitive to people who appear to be culturally displaced.
2) At this point in time I am truly bewildered as to why Canada will not perform the “liberation” procedure for people with Multiple Sclerosis (MS). Working in the medical field I UNDERSTAND the hesitation given that this procedure has not been studied enough to evaluate its safety on people living with MS. For example what if by opening up the veins the extra blood flow causes a reaction that could be very detrimental for those living with MS?
However, after critically examining this question and by living through the liberation procedure, I have realized that I felt a lot more informed about the procedure and its potential complications than I ever felt about the potential complications of the interferon Rebif that I take every other day. I was never informed by a health professional about the possible and very serious long-term side-effects of Rebif, but yet the doctor here in Egypt made sure to go over every single potential complication as well as what to expect symptom-wise before the angioplasty procedure.
As I have recently learned, taking Rebif may have caused a large tumor on my thyroid, and it has also almost wiped my entire immune system out. I think at this point in time, the risks associated with Rebif are far more severe than having had an angioplasty of my internal jugular veins and azygos vein to make them function as they normally should. The doctors all mention that they are uncertain as to the long-term benefits of having the liberation procedure, however Rebif is also a new medication and there is absolutely no way to predict the long term benefits OR complications of this medication.
When I get home I am confused as to whether or not I will resume taking my Rebif. Although my immune system is compromised, I feel forced by the MS Clinic to continue to take this medication. Is this really to my benefit? I really wish an informed healthcare professional could take the time to go over this question with me. However, in reality there are no informed healthcare professionals because they truly do not know the benefits.
In summary, I think that our government needs to let the MS community make an INFORMED consent about whether or not they would like to participate in the liberation procedure. By taking the 10 minutes of time to outline to the patients that at this point in time there are no known benefits or that there are no known long-term complications and having the patient sign a waiver the doctors are “liberated” from liability. People with MS live every day not knowing if they will be able to wake up walking and talking so I highly doubt they will care that if in 5 years there is no known benefit or they end up having a stroke. If they do care, then well, they don’t have to have the procedure performed.
3) I have seen MIRACLES performed on this trip. People with MS who could not walk without the assistance of a walking aid, people with MS who could not bend to pick-up a fallen object, people with MS who could not spin around, all who now CAN do these simple everyday tasks! I watched in amazement as one lady from the U.S. who dragged her feet in to visit me in the hospital on the day of my procedure who just yesterday after being “liberated” stood on one foot and raised her other leg directly up to her head! I’m not making this stuff up. There is no way in my mind that the miracles that I have witnessed are a placebo effect.
In my case most of my MS symptoms were invisible so it is hard for others to objectively gauge my improvements. I came here to be liberated for my family and me. I got liberated to hopefully stop the progression of my MS course before I got to the point of being unable to walk. This procedure does the exact same thing as the interferon medications that the MS Clinic pushes and forces, “HOPEFULLY stops the progression of MS symptoms.”
4) Big question, “Would I do this again if my veins become re-blocked?” My answer, not immediately. If my veins became re-blocked in a year and I noticed an improvement with my MS symptoms, then YES. However, if my veins became re-blocked within months of this procedure, likely I would wait until there is an APPROVED venous stent that would indefinitely keep my veins open they way they were intended to be. It is hard traveling great distances for procedures such as this and being away from my daughter.
The doctor in Egypt made recommendations that because my veins were so seriously blocked that I should be re-evaluated by ultrasound and MRV within three months. Unfortunately, I know that this can’t happen in Canada which is very sad. I’m not sure what happened to the important concepts of health promotion and prevention?
5) PLEASE Manitoban doctors, I hope you are able to read through this very long blog and consider some of it. It is important that people in Manitoba with MS have the RIGHT to make informed decisions concerning their health and well-being.
I would like to share a few important life lessons I have learned on this journey with everyone:
1) As a fair skinned, blonde, blue eyed, female I experienced what it is like to be stereotyped against. It wasn’t until the local females grew to know me as a person that they became more accepting of me. The males LOVED me albeit I encountered countless “cat calls” and some very obscene gestures. It was a very different perspective being the anomaly. Having had this experience I hope and believe that I will be a lot more sensitive to people who appear to be culturally displaced.
2) At this point in time I am truly bewildered as to why Canada will not perform the “liberation” procedure for people with Multiple Sclerosis (MS). Working in the medical field I UNDERSTAND the hesitation given that this procedure has not been studied enough to evaluate its safety on people living with MS. For example what if by opening up the veins the extra blood flow causes a reaction that could be very detrimental for those living with MS?
However, after critically examining this question and by living through the liberation procedure, I have realized that I felt a lot more informed about the procedure and its potential complications than I ever felt about the potential complications of the interferon Rebif that I take every other day. I was never informed by a health professional about the possible and very serious long-term side-effects of Rebif, but yet the doctor here in Egypt made sure to go over every single potential complication as well as what to expect symptom-wise before the angioplasty procedure.
As I have recently learned, taking Rebif may have caused a large tumor on my thyroid, and it has also almost wiped my entire immune system out. I think at this point in time, the risks associated with Rebif are far more severe than having had an angioplasty of my internal jugular veins and azygos vein to make them function as they normally should. The doctors all mention that they are uncertain as to the long-term benefits of having the liberation procedure, however Rebif is also a new medication and there is absolutely no way to predict the long term benefits OR complications of this medication.
When I get home I am confused as to whether or not I will resume taking my Rebif. Although my immune system is compromised, I feel forced by the MS Clinic to continue to take this medication. Is this really to my benefit? I really wish an informed healthcare professional could take the time to go over this question with me. However, in reality there are no informed healthcare professionals because they truly do not know the benefits.
In summary, I think that our government needs to let the MS community make an INFORMED consent about whether or not they would like to participate in the liberation procedure. By taking the 10 minutes of time to outline to the patients that at this point in time there are no known benefits or that there are no known long-term complications and having the patient sign a waiver the doctors are “liberated” from liability. People with MS live every day not knowing if they will be able to wake up walking and talking so I highly doubt they will care that if in 5 years there is no known benefit or they end up having a stroke. If they do care, then well, they don’t have to have the procedure performed.
3) I have seen MIRACLES performed on this trip. People with MS who could not walk without the assistance of a walking aid, people with MS who could not bend to pick-up a fallen object, people with MS who could not spin around, all who now CAN do these simple everyday tasks! I watched in amazement as one lady from the U.S. who dragged her feet in to visit me in the hospital on the day of my procedure who just yesterday after being “liberated” stood on one foot and raised her other leg directly up to her head! I’m not making this stuff up. There is no way in my mind that the miracles that I have witnessed are a placebo effect.
In my case most of my MS symptoms were invisible so it is hard for others to objectively gauge my improvements. I came here to be liberated for my family and me. I got liberated to hopefully stop the progression of my MS course before I got to the point of being unable to walk. This procedure does the exact same thing as the interferon medications that the MS Clinic pushes and forces, “HOPEFULLY stops the progression of MS symptoms.”
4) Big question, “Would I do this again if my veins become re-blocked?” My answer, not immediately. If my veins became re-blocked in a year and I noticed an improvement with my MS symptoms, then YES. However, if my veins became re-blocked within months of this procedure, likely I would wait until there is an APPROVED venous stent that would indefinitely keep my veins open they way they were intended to be. It is hard traveling great distances for procedures such as this and being away from my daughter.
The doctor in Egypt made recommendations that because my veins were so seriously blocked that I should be re-evaluated by ultrasound and MRV within three months. Unfortunately, I know that this can’t happen in Canada which is very sad. I’m not sure what happened to the important concepts of health promotion and prevention?
5) PLEASE Manitoban doctors, I hope you are able to read through this very long blog and consider some of it. It is important that people in Manitoba with MS have the RIGHT to make informed decisions concerning their health and well-being.
Friday, May 28, 2010
Walk Like An Egyptian
Helllooo!
I really feel good! I'm not sure if it is because I have been able to sleep in and not get up at 6:00 AM everyday with my daughter or if it is because of being liberated. I guess once I'm back at home, I'll be able to really determine my energy level! Regardless, I don't feel depressed, I have a ton of energy, my husband noted that I am actually really funny and haven't cracked jokes this much since we met 11 years ago. My feet still are warm and pink, my eyes still are a teal color as opposed to a dark blue.
Today we walked, and walked, and walked. We walked downtown Alexandria for about three hours today, sat by the sea, and had a fantastic lunch. We also played "Frogger" trying to cross the busy highways here. What an experience! We are greatly enjoying the weather, food, and friendly people here. Egypt exceeded my expectations.
Tomorrow a whole new group of people get liberated here. One more day in Egypt and we then embark on our 30 hour destination back to Manitoba!
I really feel good! I'm not sure if it is because I have been able to sleep in and not get up at 6:00 AM everyday with my daughter or if it is because of being liberated. I guess once I'm back at home, I'll be able to really determine my energy level! Regardless, I don't feel depressed, I have a ton of energy, my husband noted that I am actually really funny and haven't cracked jokes this much since we met 11 years ago. My feet still are warm and pink, my eyes still are a teal color as opposed to a dark blue.
Today we walked, and walked, and walked. We walked downtown Alexandria for about three hours today, sat by the sea, and had a fantastic lunch. We also played "Frogger" trying to cross the busy highways here. What an experience! We are greatly enjoying the weather, food, and friendly people here. Egypt exceeded my expectations.
Tomorrow a whole new group of people get liberated here. One more day in Egypt and we then embark on our 30 hour destination back to Manitoba!
Thursday, May 27, 2010
Now the Veins are Flowing Like the Nile
Just a quick update. I had my second doppler ultrasound done this evening and my veins are completely normal! I made the doctor scan his own neck just so I could compare mine with his! My veinous valves were both not working before the procedure but now they were flapping away and very quickly I might add.
I met some more people today at the clinic who were having the procedure done on Saturday. One other Canadian who was diagnosed with CCSVI right before my eyes (the doctor also called me in so I could compare my normal scan to a scan that was abnormal). There were a few Saudi people also coming in for a doppler scan and to be diagnosed with CCSVI. They were all very pleasant, hopeful, and optimistic. It was such a pleasure to speak with these people and to learn about their culture and their medical system. What an amazing experience this has been. We also shared a cab this evening with the new Canadian who recently came here for the procedure on Saturday and we had such a blast with the cab driver. He cranked up some English tunes and the recently diagnosed CCSVI Canadian's sister started dancing in the car (and she is also blonde)! The driver started to hit on her and it was so beyond funny as she tried to explain to him that her husband was arriving the next day. These are moments I will never forget!
As for improvements with symptoms: My eyes are a different color...really!; I don't feel as fatigued, my neck doesn't hurt as much, and my feet are still pink! The other Canadian has reported an increased sense of balance and improved energy. The person from Greece also has reported an increase in energy. The procedure was successful for all three of us who were treated yesterday in the sense that the veins remain open and functional.
I did ask the doctor if he had noticed any correlation between very twisted veins and the symptoms associated with MS and he said there is no correlation in any regard. He gave numerous examples of others such as myself with beginning stages of MS and extremely twisted veins. The doctors here are so beyond patient, understanding, kind, and attentive. I sincerely thank them for all of their time and generosity shown towards me and my husband. Thank-you!
I look forward to my continued improvements and I so long to be home safe with my sweet baby girl.
I met some more people today at the clinic who were having the procedure done on Saturday. One other Canadian who was diagnosed with CCSVI right before my eyes (the doctor also called me in so I could compare my normal scan to a scan that was abnormal). There were a few Saudi people also coming in for a doppler scan and to be diagnosed with CCSVI. They were all very pleasant, hopeful, and optimistic. It was such a pleasure to speak with these people and to learn about their culture and their medical system. What an amazing experience this has been. We also shared a cab this evening with the new Canadian who recently came here for the procedure on Saturday and we had such a blast with the cab driver. He cranked up some English tunes and the recently diagnosed CCSVI Canadian's sister started dancing in the car (and she is also blonde)! The driver started to hit on her and it was so beyond funny as she tried to explain to him that her husband was arriving the next day. These are moments I will never forget!
As for improvements with symptoms: My eyes are a different color...really!; I don't feel as fatigued, my neck doesn't hurt as much, and my feet are still pink! The other Canadian has reported an increased sense of balance and improved energy. The person from Greece also has reported an increase in energy. The procedure was successful for all three of us who were treated yesterday in the sense that the veins remain open and functional.
I did ask the doctor if he had noticed any correlation between very twisted veins and the symptoms associated with MS and he said there is no correlation in any regard. He gave numerous examples of others such as myself with beginning stages of MS and extremely twisted veins. The doctors here are so beyond patient, understanding, kind, and attentive. I sincerely thank them for all of their time and generosity shown towards me and my husband. Thank-you!
I look forward to my continued improvements and I so long to be home safe with my sweet baby girl.
CCSVI Liberation in Egypt-The Good, The Bad, The Ugly!
First and foremost I would like to thank everyone who has supported my fundraising endeavors, to my family, friends, neighbors, and strangers for their generous donations towards getting this procedure done in Egypt. The complete cost of having this procedure done in Egypt cost over $15, 000 including the operation, transportation around Egypt, the medications, the airfare, and accommodations. Although, I still had to use every last penny of my savings, your generous support has greatly helped to make the experience of CCSVI liberation a possibility for me and my family.
Now, I’ll share about liberation in Egypt and will try to include every detail that I can remember.
Those darn expectations we all have! They either make us proud or really bum us out. I told everyone before leaving for this procedure that I had NO expectations about the results of the procedure or about Egypt. Having no expectations for these two events greatly helped my psyche because the outcome was better than I expected. However, I had the expectation that the liberation procedure would be a “piece of cake.” Perhaps for others it was, but for me it wasn’t that easy. I’ll start from when I arrived to the hospital:
Arrival: We went to one of the hospitals in Egypt where we registered. A nurse came down and greeted us and took us to our private room. The room was gorgeous with a huge ensuite and a fresh flower bouquet on the table. My nurse spoke English which was very helpful and explained that I needed to take a shower with an anti-bacterial wash and then change into a set of hospital pajamas and slippers. She then proceeded to take my vitals. Of course, as I went to have a shower the shower head fell off the wall and made quite a huge mess! The only thing my husband and I could do was laugh.
Following the shower, the nurse started an IV and gave me IV antibiotics and a pain medication as I had a very severe migraine that actually kept me from sleeping the night before. The nurse then proceeded to insert a foley catheter which was very uncomfortable. Their sterile technique was also not to the Canadian standards. I inquired as to why I needed the foley as I would be awake during the procedure. She explained that the procedure would be long and they could not stop for a bathroom break.
The doctor then came and greeted me and answered all of my questions. He gave me a booklet of information concerning the procedure, the possible complications, what to do post-procedure, the medications to take, and most importantly what to expect for improvement of symptomatology. The doctor writes that the earlier in the course of MS that you have CCSVI treatment, the results will be better. He also states that this procedure will benefit all forms of MS (RRMS, primary and secondary progressive) however the greater benefit will be for those with RRMS. Also, signs of improvements may be immediate or delayed up until about three months post-operative. There also may be some deterioration during the first three months up until the body adjusts to the increased blood flow. Lastly, there is a 20% chance of re-stenosis of the veins which will require another balloon angioplasty.
This particular doctor does not use stents due to the risk of migration. As a result the angioplasty performed is in excess of one hour or more. The doctor stated that if stents were used the procedure would only take 20-30 minutes. He feels that within the next year there will be a stent specifically developed for the internal jugular veins and azygous veins.
Procedure: I was wheeled into a pre-operative suite where I received more antibiotics and sedative through intravenous. From there I was taken to the OR. The anesthetist noticed that I was very anxious so decided to give me a lot of “happy medications.” I was almost put completely out and didn’t feel a thing other than some pressure in my neck and chest as the balloons were dilated. I could talk, I could participate by holding my breath etc. but I was VERY drowsy and had no real idea what was going on. The doctor exclaimed that I had the worst veins he has ever seen in his 30 years of practice. Apparently my azygous vein was twisted twice. So I now know that there is no correlation between vein stenosis/blockage and MS symptomatology and disease progression. The procedure took about an hour and a half.
Post-op: This is where my expectations let me down. I expected the procedure to be simple and that I would jump off of the bed, eat a meal and be fine. Nope! I was nauseated, dizzy, fatigued. My neck, chest, and back were so sore and I threw up about five times. I was given something for the nausea which greatly helped and was reassured by the doctor that the pain was normal as my veins had just been stretched from being nothing to a “normal” size. He then pulled the covers off of my feet and exclaimed, “LOOK!” My feet which were blue before the procedure (we have pictures) were completely pink. I smiled a bit, but still told him that I regretted the procedure because of how I felt. He told me that I was the best candidate for this procedure as I was young, my disease was in the early stages, and my veins were a disaster. He reassured me that I would feel better and better with each passing day. He also shared some very amazing successful stories of other patients that he has treated. As he shared these stories there were tears in his eyes. He told me that he makes little to no money from doing this procedure on foreigners but because he believes in the results he wants to help everyone out regardless of where they are from. He stated that he can not believe that Canada does not offer this procedure and mentioned that if even one doctor performed the procedure on one individual with CCSVI, they would become so addicted to keep performing the procedure as the results can be truly staggering.
Overall: The hospital was gorgeous, the staff were very courteous, attentive, and helpful. On post-op day one, my neck, chest, incision site, and back still hurt. I am no longer tired or nauseated and my feet are pink. My husband also mentioned that my complexion is also pinker. So from now, I will be taking the Egyptian equivalent of heparin subcutaneously for 3 days twice a day, Aspirin for a year, and Plavix for a couple of weeks. I have a second ultrasound scheduled for later this afternoon to ensure that my blood is in fact flowing from my brain. I will finally be able to see what “normal” looks like on the ultrasound scan.
Also, the other Canadian that was treated yesterday who could not walk without her walker albeit being completely dizzy and nauseated from the medications took steps without her walker yesterday! I can’t wait to see her today!
So would I do this again? At this point in time I honestly don’t know. I do feel warmer, and it feels like I can breathe easier. I hope that my symptoms either a) stay the same as they were forever and ever b)get better.
I will continue to provide updates as my symptoms improve or exacerbate as well as provide updates of how the other patients are doing.
Now, I’ll share about liberation in Egypt and will try to include every detail that I can remember.
Those darn expectations we all have! They either make us proud or really bum us out. I told everyone before leaving for this procedure that I had NO expectations about the results of the procedure or about Egypt. Having no expectations for these two events greatly helped my psyche because the outcome was better than I expected. However, I had the expectation that the liberation procedure would be a “piece of cake.” Perhaps for others it was, but for me it wasn’t that easy. I’ll start from when I arrived to the hospital:
Arrival: We went to one of the hospitals in Egypt where we registered. A nurse came down and greeted us and took us to our private room. The room was gorgeous with a huge ensuite and a fresh flower bouquet on the table. My nurse spoke English which was very helpful and explained that I needed to take a shower with an anti-bacterial wash and then change into a set of hospital pajamas and slippers. She then proceeded to take my vitals. Of course, as I went to have a shower the shower head fell off the wall and made quite a huge mess! The only thing my husband and I could do was laugh.
Following the shower, the nurse started an IV and gave me IV antibiotics and a pain medication as I had a very severe migraine that actually kept me from sleeping the night before. The nurse then proceeded to insert a foley catheter which was very uncomfortable. Their sterile technique was also not to the Canadian standards. I inquired as to why I needed the foley as I would be awake during the procedure. She explained that the procedure would be long and they could not stop for a bathroom break.
The doctor then came and greeted me and answered all of my questions. He gave me a booklet of information concerning the procedure, the possible complications, what to do post-procedure, the medications to take, and most importantly what to expect for improvement of symptomatology. The doctor writes that the earlier in the course of MS that you have CCSVI treatment, the results will be better. He also states that this procedure will benefit all forms of MS (RRMS, primary and secondary progressive) however the greater benefit will be for those with RRMS. Also, signs of improvements may be immediate or delayed up until about three months post-operative. There also may be some deterioration during the first three months up until the body adjusts to the increased blood flow. Lastly, there is a 20% chance of re-stenosis of the veins which will require another balloon angioplasty.
This particular doctor does not use stents due to the risk of migration. As a result the angioplasty performed is in excess of one hour or more. The doctor stated that if stents were used the procedure would only take 20-30 minutes. He feels that within the next year there will be a stent specifically developed for the internal jugular veins and azygous veins.
Procedure: I was wheeled into a pre-operative suite where I received more antibiotics and sedative through intravenous. From there I was taken to the OR. The anesthetist noticed that I was very anxious so decided to give me a lot of “happy medications.” I was almost put completely out and didn’t feel a thing other than some pressure in my neck and chest as the balloons were dilated. I could talk, I could participate by holding my breath etc. but I was VERY drowsy and had no real idea what was going on. The doctor exclaimed that I had the worst veins he has ever seen in his 30 years of practice. Apparently my azygous vein was twisted twice. So I now know that there is no correlation between vein stenosis/blockage and MS symptomatology and disease progression. The procedure took about an hour and a half.
Post-op: This is where my expectations let me down. I expected the procedure to be simple and that I would jump off of the bed, eat a meal and be fine. Nope! I was nauseated, dizzy, fatigued. My neck, chest, and back were so sore and I threw up about five times. I was given something for the nausea which greatly helped and was reassured by the doctor that the pain was normal as my veins had just been stretched from being nothing to a “normal” size. He then pulled the covers off of my feet and exclaimed, “LOOK!” My feet which were blue before the procedure (we have pictures) were completely pink. I smiled a bit, but still told him that I regretted the procedure because of how I felt. He told me that I was the best candidate for this procedure as I was young, my disease was in the early stages, and my veins were a disaster. He reassured me that I would feel better and better with each passing day. He also shared some very amazing successful stories of other patients that he has treated. As he shared these stories there were tears in his eyes. He told me that he makes little to no money from doing this procedure on foreigners but because he believes in the results he wants to help everyone out regardless of where they are from. He stated that he can not believe that Canada does not offer this procedure and mentioned that if even one doctor performed the procedure on one individual with CCSVI, they would become so addicted to keep performing the procedure as the results can be truly staggering.
Overall: The hospital was gorgeous, the staff were very courteous, attentive, and helpful. On post-op day one, my neck, chest, incision site, and back still hurt. I am no longer tired or nauseated and my feet are pink. My husband also mentioned that my complexion is also pinker. So from now, I will be taking the Egyptian equivalent of heparin subcutaneously for 3 days twice a day, Aspirin for a year, and Plavix for a couple of weeks. I have a second ultrasound scheduled for later this afternoon to ensure that my blood is in fact flowing from my brain. I will finally be able to see what “normal” looks like on the ultrasound scan.
Also, the other Canadian that was treated yesterday who could not walk without her walker albeit being completely dizzy and nauseated from the medications took steps without her walker yesterday! I can’t wait to see her today!
So would I do this again? At this point in time I honestly don’t know. I do feel warmer, and it feels like I can breathe easier. I hope that my symptoms either a) stay the same as they were forever and ever b)get better.
I will continue to provide updates as my symptoms improve or exacerbate as well as provide updates of how the other patients are doing.
Tuesday, May 25, 2010
Veins are Not Flowing Like the Nile
Good news everyone, I am happy to announce I have a new medical condition (drum roll please)...CCSVI!
After jumping into a taxi that ripped us off and going to some clinic located in a back alley, the radiologist confirmed that I do in fact have CCSVI. My left jugular vein is completely blocked, the valve stays completely shut while my right jugular vein is very stenosed. The doctor also found a 6 cm tumor in my thyroid. He told me that he would provide me with a CD that I would need to bring to my GP so that they can further evaluate and treat this. This provides me with a way to actually get scanned in Canada!
There were 2 other couples that also got scanned today. One young woman with her father were from Montreal. Her RRMS has severely taken a turn for the worse after giving birth to her son a short while ago. She is unable to walk without the assistance of a 2 wheeled walker. The other couple were from Greece. She has secondary progressive MS and while she can walk, she walks with a severe limp and severe pain. All three of us had some problem with our veins that will need to be corrected tomorrow morning.
As I lay getting the ultrasound done (which by the way only took 2 minutes), I was thinking to myself that it is so ironic that I am in Egypt getting this procedure done, when we in MB have the same ultrasound and we supposedly are a first world country? The doctor here in Egypt didn't even need to do a MRV/MRI as it was so obvious that there was a problem with my internal juggular veins. I will end with one word that sums up everything I am feeling right now, "WOW!"
Liberation day tomorrow! I can't wait!
After jumping into a taxi that ripped us off and going to some clinic located in a back alley, the radiologist confirmed that I do in fact have CCSVI. My left jugular vein is completely blocked, the valve stays completely shut while my right jugular vein is very stenosed. The doctor also found a 6 cm tumor in my thyroid. He told me that he would provide me with a CD that I would need to bring to my GP so that they can further evaluate and treat this. This provides me with a way to actually get scanned in Canada!
There were 2 other couples that also got scanned today. One young woman with her father were from Montreal. Her RRMS has severely taken a turn for the worse after giving birth to her son a short while ago. She is unable to walk without the assistance of a 2 wheeled walker. The other couple were from Greece. She has secondary progressive MS and while she can walk, she walks with a severe limp and severe pain. All three of us had some problem with our veins that will need to be corrected tomorrow morning.
As I lay getting the ultrasound done (which by the way only took 2 minutes), I was thinking to myself that it is so ironic that I am in Egypt getting this procedure done, when we in MB have the same ultrasound and we supposedly are a first world country? The doctor here in Egypt didn't even need to do a MRV/MRI as it was so obvious that there was a problem with my internal juggular veins. I will end with one word that sums up everything I am feeling right now, "WOW!"
Liberation day tomorrow! I can't wait!
Monday, May 24, 2010
Where are the Camels?
We made it to Alexandria Egypt! I was beyond shocked getting off of the plane. Indiana Jones tainted my expectations and vision of Egypt. I was expecting pyramids, desert, and camels to be walking around. Instead, I find myself in a place that is highly modernized and a city that literally does not sleep! Some of the building architecture is simply amazing. Yes, there is a lot of garbage and everytime that I enter a room, I capture everyone's full attention. I really should have dyed my hair a dark color. Regardless, we made it here safely, albeit I had finger nail imprints in my hands after the loooong drive from Cairo to Alexandria (about 4 hours). There simply is no way to describe the way the people here drive other than chaotic.
For my fellow MS'ers whose disease is more advanced than mine, please be warned that coming to Egypt from Manitoba is very gruelling. The total trip lasted well over 24 hours. It is virtually impossible to be able to sleep (other than catching a few cat naps here and there). Also for those with bladder/bowel impairments, getting up and down to use the bathroom on the plane becomes a real hassle.
As for my personal MS symptoms, because of lack of sleep, I had extreme vertigo, and had left sided neuropathic pain on the thigh, as well as right-sided eye pressure, and a migraine. After I slept the hardest I have EVER slept last evening, I feel better. I still feel like the room is moving and the ground underneath me is moving, but no one would be able to determine that I am experiencing these symptoms.
On an even more personal note, I feel that this trip/experience has brought my husband and I closer together since having our daughter 17 months ago. It is so nice to know that there is someone sitting next to you that truly has your best interests at heart and someone that you can rely on no matter what. I am terribly missing my daughter and have realized that she has made me an adult. If I came to Egypt before having had her, I would have been far more spontaneous looking for something to satisfy my adrenaline cravings. Now however, I am beyond cautious. I am afraid to approach people or walk alone. I just keep thinking, "I need to make it home, so I can see my daughter again and enjoy life to the fullest." It truly is amazing that children change our entire outlook on life.
So what is next? Well tomorrow is LIBERATION day! As for today, I think we will walk around (sans camels) and explore Alexandria a bit. I will be in touch the day after the liberation procedure.
For my fellow MS'ers whose disease is more advanced than mine, please be warned that coming to Egypt from Manitoba is very gruelling. The total trip lasted well over 24 hours. It is virtually impossible to be able to sleep (other than catching a few cat naps here and there). Also for those with bladder/bowel impairments, getting up and down to use the bathroom on the plane becomes a real hassle.
As for my personal MS symptoms, because of lack of sleep, I had extreme vertigo, and had left sided neuropathic pain on the thigh, as well as right-sided eye pressure, and a migraine. After I slept the hardest I have EVER slept last evening, I feel better. I still feel like the room is moving and the ground underneath me is moving, but no one would be able to determine that I am experiencing these symptoms.
On an even more personal note, I feel that this trip/experience has brought my husband and I closer together since having our daughter 17 months ago. It is so nice to know that there is someone sitting next to you that truly has your best interests at heart and someone that you can rely on no matter what. I am terribly missing my daughter and have realized that she has made me an adult. If I came to Egypt before having had her, I would have been far more spontaneous looking for something to satisfy my adrenaline cravings. Now however, I am beyond cautious. I am afraid to approach people or walk alone. I just keep thinking, "I need to make it home, so I can see my daughter again and enjoy life to the fullest." It truly is amazing that children change our entire outlook on life.
So what is next? Well tomorrow is LIBERATION day! As for today, I think we will walk around (sans camels) and explore Alexandria a bit. I will be in touch the day after the liberation procedure.
Friday, May 21, 2010
Packing and Hair Removal
Less than 48 hours until my husband and I leave for Egypt to be liberated. My denial has passed and the anxiety is starting to set in. There were periods at work today where I would break out in a sweat thinking of all of the last minute things I needed to do! "Oh no, I need to completely hairless for the procedure!" This was just one of the many thoughts racing through my mind as I attempted to concentrate on my patients addiction and mental health problems. Hence, as I type this, I sit in pain!
The doctor in Egypt has told me to record and take note of some of my current symptoms. I find this hard to do given that I hate complaining and honestly and truly consider myself a blessed individual. However as instructed, I have noticed that yesterday and today I have been extremely fatigued. Not just "tired", but "fatigued." What is the difference you might ask? Well there were times as I drove to work or drove home that I felt that I could just fall asleep at the wheel. I'm sure people suffering with narcolepsy can relate to this overwhelming desire to sleep. I also note cold extremities, slight right-sided foot drop, leg spasms, slight dizziness, and word finding difficulties. I also learned that due to my medication, my white blood cell count is dangerously low. As such, I have stopped taking my medication so that my immune system can somewhat recover before the surgery.
My biggest anxiety is not the procedure but it is leaving my gorgeous 17 month old daughter. I have never left her before for longer than a day at daycare. My parents have graciously offered to look after her at our home.
The health minister recently asked me if I was scared to have this procedure done. Of course, I would certainly feel a lot more comfortable and confident if the procedure was done in my own province by the doctors that I know, trust, and work with, however, I confidently replied that I was far more scared of what my future outcome might be given that if I didn't take this opportunity to slow the progression of my MS course. I explained that my worst fear was if my daughter would have to become my caregiver. I am not only doing this for the benefit of myself, but for my family, and for those that depend on my services as a nurse and a caregiver. I have lots to give and greatly look forward to the future.
The doctor in Egypt has told me to record and take note of some of my current symptoms. I find this hard to do given that I hate complaining and honestly and truly consider myself a blessed individual. However as instructed, I have noticed that yesterday and today I have been extremely fatigued. Not just "tired", but "fatigued." What is the difference you might ask? Well there were times as I drove to work or drove home that I felt that I could just fall asleep at the wheel. I'm sure people suffering with narcolepsy can relate to this overwhelming desire to sleep. I also note cold extremities, slight right-sided foot drop, leg spasms, slight dizziness, and word finding difficulties. I also learned that due to my medication, my white blood cell count is dangerously low. As such, I have stopped taking my medication so that my immune system can somewhat recover before the surgery.
My biggest anxiety is not the procedure but it is leaving my gorgeous 17 month old daughter. I have never left her before for longer than a day at daycare. My parents have graciously offered to look after her at our home.
The health minister recently asked me if I was scared to have this procedure done. Of course, I would certainly feel a lot more comfortable and confident if the procedure was done in my own province by the doctors that I know, trust, and work with, however, I confidently replied that I was far more scared of what my future outcome might be given that if I didn't take this opportunity to slow the progression of my MS course. I explained that my worst fear was if my daughter would have to become my caregiver. I am not only doing this for the benefit of myself, but for my family, and for those that depend on my services as a nurse and a caregiver. I have lots to give and greatly look forward to the future.
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