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.


  1. Well said Nicole! I could not agree with you more. As with you the doctors in Poland also advised me that I would need to be
    re-evaluated 3-6 months after my treatment. Since I have a stent placed this is a great concern to me as well as my family. Where can I go to have this done without having to spend an additional amount of monies and well as time away from my family.

    CCSVI has brought a choice to MS patients that they did not have before...why not let the patients choose their own treatment.

    Be well and travel safe,
    Alison fellow CCSVI patient and Manitoban

  2. Great post, Nicole! I think what most of us are upset with, is the fact that the Canadian medical establishment is not allowing US to make a decision concerning our health and potential treatments. At least that's how I see it.

  3. Great post, Nic. Safe travels home. xoxo

  4. congratulations Nichole! I am off to Poland on Friday and will be 'liberated' next week. I haven't been feeling well this past while and I've been a nervous wreck wondering about so many things. You did put my mind at rest with your objective post.
    I might add, I was on Rebif for 15 years, I thought I knew about many side effects, but I hadn't heard about the thyroid one. I wonder if that's why I have lesions on my thyroid...hmmmm. Anyway, I went off of it last year and I'm not looking back. I was concerned to find out by googling side effects when they reformulated, that there is actually a significant chance of hep C and other blood diseases, and that was after their own doctor's assured me there was no way any of those would survive the formulation process. As if we don't live with enough risk alrady?
    take care and keep well!

  5. How do you feel now? Do you continue to inject Rebif?