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.