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.

Friday, May 28, 2010

Walk Like An Egyptian

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.

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.

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!

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.

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.