Tuesday, June 29, 2010

My sister in law Kim had these questions, so I thought I'd share my answers with all of you. Thanks for caring so much Kim. Love you.

Is it unusual to have the initial scan detect narrowing and then not find it in the venography? Yes, very common. Pretty much everyone who had the MRV's results did not match up, so they have done away with the MRV. It is a miserable experience and it is just not accurate enough. The most accurate way to see narrowing in the veins is to go inside the veins and look at them.

How can they be sure they got it all? I guess there's no way to be certain, but Dr. Fallas was extremely thorough. He showed us all the pictures of my veins, and they looked wide open, except for where they were narrowed:)

Will you have a follow-up MRI? Doppler? Well, the MRI and the doppler have not proven to be at all reliable, so I'm not sure. I'd imagine that if my symptoms return, that will be a clue that my veins have restenosed, in which case I would need another venogram. Hopefully, if that happens, by that time it will be a widely accepted procedure in the US. There is about a 30 percent restonisis rate, so there is definitely a possibility of that happening.

And for the vein that is affected (May Thurner Syndrome), can they refer you to a Dr. in the states that can fix it? Will your insurance pay for that? I can just find a vascular surgeon in the states. I already know of a good one. And yes, insurance should easily cover May Thurner Syndrome.

Do they want you to take any MS drug treatments post-Liberation? If so, which drugs? Why? Dr. Zamboni and any other dr. we've talked to does recommend that you stay on any treatments that you are already on. Many people have gone off their drugs and feel great, but many people are opting to stay on them. I will definitely stay on LDN because it's an inexpensive pill that doesn't have any side effects and it has helped me immensely. The drs do not know why LDN works, but it does, so I'm not going to mess with success. Maybe it prevents more stenosis? Who knows. Nobody.

What kinds of follow up will you need? Not sure. I'll ask Dr. Fallas at my appointment today.

Have other patients had any improvement as far as the presence or absence of lesions is concerned? Can you anticipate that any/all of your lesions will go away? Remain? There have been mixed reports about this. Some people have reported that some of their lesions are disappearing. Others say their functions are returning and their lesions remain..that their neurons have been able to find new pathways around the lesions, etc.

Do you feel Liberated? Do any of your MS symptoms remain? YES!!! YES!!! YES!!!!!!!! WEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!! I really, really, really do. I feel more clear headed, more balanced, more energized, and more strong. I feel more coordinated, and I have before and after tests that prove it. It's amazing. When I came out of surgery, I was laying on the operating table and tried to do the test with my feet that, just hours before, I could not do. And I was doing it!!!! I was still half out of it, but I was tapping my left foot back and forth on the edge of my bed and couldn't believe it. I literally could NOT do that a few hours before. The past few months, my balanced had gotten really bad. Even when I wasn't at all dizzy, I would tip one way and the other constantly, especially when trying to focus on looking at one thing. Anyway, it's so hard to type out in a few paragraphs but I think you'll see the differences when you see me again. Love you all!!!


  1. toby, what does ms do to you? i tried googling it and it was all gibberish to me...can you sum it up?

  2. Thanks for anwsering my questions Toby! I'm so happy for you and I'm so glad that you get to come home soon. We will keep praying that your symptoms do NOT return! Love you!

  3. HOORAY! Toby I'm so excited for you. Your kids deserve to have their awesome mommy feeling 100% herself. I posted a link to your blog on my blog and put your family picture on there too. Let me know if you'd rather I take it off. I have many family members and friends who are also affected by MS so I thought they'd like to see your blog. THanks!

  4. Toby!! This is Jackie from Freshman year...I read Kristins blog! I have always wondered how you are doing and where you are! I am glad that I can keep tabs on you now! :-) (sorry, that really sounded like a stalker comment!) Glad to hear you are feeling well. Love you!

  5. I think you were really good at hiding a lot of your inabilities or difficulties before. I am excited for your family. I love to hear you updates. It is so incredible.