Something Worth Sharing: Her Story, Her Health

This is my friend Jessi, and this is her story. One that I think many should read as this is about MS. Something that affects so many in our world, and may not have to.

Jessi and Sean

I want to share some information about my health to any of my friends who are interested.

[Please forgive, it may be a little lengthy!]

I have been going through some health issues that started a decade ago and I realized that some of my closest friends don’t know the details. In 2000, the right side of my head/face and my right arm went numb, like it had fallen asleep, only it didn’t wake up for a month. After numerous tests and doctor’s appointments, an MRI showed demyelinization of the fatty sheaths that protect the nerves in my brain, there were small holes in these sheaths, which is a symptom of MS. But the doctors didn’t diagnose at that time because the condition “multiple” sclerosis indicates that symptoms occur more than once. The numbness went away on its own and besides taking vitamins and changing my diet a bit, my life went along for eight years without further symptoms.

But then in June of 2008, I began getting vertigo. Nothing major, I wouldn’t fall over, but felt dizzy and uneasy on my feet at times. An MRI showed further demyelinization, four new lesions, and I was officially diagnosed with MS. I was in tears when Sean picked me up from my appointment (the main reason I had gone to the doctor was for allergies, I hadn’t expected the results from this MRI to show anything) and Sean said with conviction “all this does is solidify that I want to spend the rest of my life with you” We were pregnant the next month and engaged soon after. He meant business 😉

During the second trimester of my pregnancy, I started to have some health issues, that were most likely related to the disease. One interesting symptom that really flared up during the 2nd trimester was a “ringing” in my right ear, which wasn’t actually a ringing sound, but a loud sound of my blood flowing to the beat of my heart. It got so loud during pregnancy I couldn’t hear the tv at times and it kept me up at night. I still have this symptom and it sounds like a storm, wind, pressure all in my right ear. I had scans done to make sure that I would be ok in labour, and everything showed normal. Since having Linden, I have had chronic fatigue (one of the worst symptoms in patients with MS) and chronic headaches as well as overall weakness.

Around a year ago, a doctor from Italy came up with a new theory of what MS is, his name is Zamboni (how fitting considering my love of hockey!) and his wife has MS. He studied patients and noticed that all of them had high levels of iron in the blood in their brains. He scanned their jugular veins and they all had stenosis, narrowing of their jugular veins. Blood that was supposed to be draining from their brains was actually flowing back up, increasing the levels of iron in their brains, causing toxicity, and creating the damage to nerves. MS can cause a whole host of symptoms because nerves can’t send impulses correctly when their protective covering has holes in it. It can create cognitive issues, mobility issues, emotional issues, so many symptoms. So Zamboni performed a simple procedure to open the narrowed veins in patients, he performed angioplasty-opening the veins with a balloon. The blood immediately started to drain from patients’ brains and the results for most patients have been amazing. People with numb limbs report increased feeling immediately after the procedure. People with chronic headaches for years say they went away while they were still on the operating table. People report improvement in energy which only gets better over time. Some people could even walk when they hadn’t been able to before the procedure. Zamboni’s findings challenge what MS is. Always thought of as an autoimmune disease where the body attacks its own nerves without any reason, he is now saying it is a vascular disease-a problem with the shape of the vein. To me, it makes perfect sense. I can actually hear the issue with my jugular vein, every day! I can put pressure on this vein and the loud noise in my ear stops.

But neurologists are not jumping on this theory. The medical community wants to do research, studies, and prove that this theory is correct. The problem is, these studies are going to take a lot of time (at least two years of just scanning the veins, without performing angioplasty on anyone) and the MS community says we cannot wait. Zamboni said himself that performing the procedure at the earliest stage, before major damage to the body is done is best. In two years time, many patients will be in wheel chairs and some damage is too severe to improve. Many countries will perform the procedure for about $10,000 but no one is doing it in Canada (at least openly, two patients talked their doctor into doing it in Victoria and both had incredible results, but the doctor got in a lot of trouble for doing it). So the fight is on, with MS patients arguing that regardless if this vein issue causes MS or if it is a symptom, if a person has a malformed vein that can be fixed, for eff’s sake fix it! People with clogged arteries get angioplasty all the time, so why not help people with narrowed veins?

So I wanted to share just in case anyone has MS, or knows anyone with MS and let them know of the facebook fan page CCSVI in Multiple Sclerosis that has provided me with a wealth of information. A woman named Joan started the group and her husband underwent the procedure with great results. Joan is an amazing advocate for CCSVI (the medical name coined by Zamboni for the narrowing of jugular veins) and for anyone who is interested or wants to support the cause, this is a great fan page with so much info. Joan is answering the questions of 15,000 people on her page, day and night. She knows her stuff!

My next step is to get scanning through a private clinic in Vancouver, False Creek Clinic, sometime in the winter. I am able to pay to get specialized scans done to see the quality of my veins in my neck, but there is no where in Canada where I can get them fixed if there is an issue. Even though I am certain in my mind I have a problem with my vein, it will be nice to see what the test results say. Hopefully treatment will be sped up with all the pressure MS patients are putting on the medical community and no one will have to wait two years to get this simple, low risk treatment.

Another reason I wanted to share what is going on is because I haven’t been able to attend a lot of fun things because of my health! I wanted to say thank you to everyone for understanding when I miss events and birthdays, I am always sad to miss out. But I am also blessed with the most incredible, amazing support system anyone could ask for! My parents are unreal, they help me withour son on almost a daily basis. They cook dinners for us and let us eat and run so we can get home and get our child to bed. They are incredible people who love us so dearly and would do anything to help. Mama and Dad, thank you a million times over!

And my husband. My unbelievably wonderful husband. He is so hard working and picks up the slack on days when I am unable to help. He loves me unconditionally and makes sure I know how much he loves me and our son every day. Everyone who knows him, knows how special a person he is, but to see him rise above this tough situation with the love and strength he has, means everything to me! Next time you see him, give him a huge hug and know he is working so hard for his family. The universe was very good to me to have set me up with such a catch 🙂

I am so grateful every day for my life, my friends, and my wonderful family. Despite feeling pretty rotten, I am so incredibly happy. I am also so hopeful, I believe that Zamboni is onto something really big here. I have so much support from my family, Sean’s family and all my friends. I am one lucky woman.

Here is the link to the Facebook fan page. I’ll keep anyone who is interested posted on my health. Thanks for taking the time to read my story! Lots of love to everyone ❤ Jessi

Another option to get in touch with Jessi is to contact me and I will pass on your information to Jessi to get in touch with you! Thanks so much for a great post Jessi!

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10 thoughts on “Something Worth Sharing: Her Story, Her Health

  1. Thanks for sharing this Jessi! I can’t even imagine living with MS and I hope you all the best in getting that surgery. It’s ridiculous that the surgery isn’t being allowed in Canada, especially since it has been proven to work! I think that it should be up to the individual – if they want the surgery, let them have it.

  2. Thank you so much for posting my story! You are welcome for sharing, thank you for your words of encouragement! I wish it were up to the individual too!

  3. Thank you for sharing! This really was a great post that I am sure will help so many people! Jess– you are amazing! I actually have heard about this theory but being in Canada…. kind of limited info. I wish you nothing but the best and please keep us updated of your progress!
    XO
    Barbara

  4. Thank you all for the wonderful comments! A little update, I am heading over to Vancouver tomorrow to get my neck scanned at Aim Medical Imaging, so I will know if I have a malformation in my veins. I will keep you posted! Much love!

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