Going to Katowice, Poland from June 23-30

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Trish317 » Sat Jul 03, 2010 5:18 am

JoyIsMyStrength wrote:I'm sorry I haven't updated this. I had some wonderful improvements:

- Fatigue cut in half
- Balance greatly improved
- Able to walk slowly unassisted (but probably would at least need a cane as foot drop still there)
- Faster movements, e.g., getting in and out of the car no longer a prolonged, slow ordeal requiring assistance - I could do it myself
- Insomnia completely resolved - this is huge

Today I am sad to report that I am back to being a slow-moving sloth. None of the improvements lasted. I wish so much that I had recorded an "after" video while the going was good, but the improvements got better every day and I was waiting a bit. Unfortunately when I awoke the other day, it became increasingly clear that I was back to square one.

The only improvement that stayed, to my surprise and delight, is the resolved insomnia. For the first time in my life I can sleep, when I'm tired, without fighting wakefulness for hours on end before drifting off. That's a wonderful thing and I'm grateful for it.

I assume I have restenosed. I'm hoping someone will tell me that the improvements could come back over time. We had hoped for stents to help ensure that restenosis would not occur, and we told the doctor we were ok with stents, but I guess it's a judgment call for them so that's that.

Right now my left foot is so purple the toes look almost black but this is not continuous -- the discoloration comes and goes in varying degrees of red, purple, and near-normal. There is pitting edema in both feet. My left leg aches off and on during the day. I know this subject has been beaten to death but could that earn me a venogram state-side to test for May-Thurner? I don't know how to approach it.

I feel a bit beaten up after all of this. My Poland adventure didn't match the fairy tale in my head. I was already quietly working on going local and had an MRV done before I left, but when the opportunity to get this done sooner than the estimated "hopefully sometime next year" came along, my weary body said "yes" and my weary, longsuffering, patient husband said "yes." We took the lifeline. We did what we felt was right for us before I wound up bedridden. The positive thing that came out of this is: We know treatment for CCSVI works. We know that opening up my jugular veins caused remarkable improvements. We know this is the right course.

Anyway I will be posting more about the reality of treatment in Poland in a separate thread.

Thanks to everyone for all the support. I enjoyed meeting so many wonderful people in Poland... I missed a lot of the folks who wanted to meet up and I'm not sure what happened to them... but I hope and pray that they were helped and that their improvements have continued.

Joy is STILL my strength! There is disappointment, sure, but I'll get over it. Joy isn't dependent on circumstances and it bubbles up inside me and fights against the gloom. My outlook is sunny. I will not give up and I will not give in. 8)


I was moved to tears by the last thing you said, Pam. I'm sorry that your improvements didn't last. I'm glad you still have hope. You're an inspiration.
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Postby JoyIsMyStrength » Wed Jul 21, 2010 5:52 pm

Trish what a sweet thing to say! Thanks! :)

Anyway... it's been almost a month so here's an update. Things have been up and down for me... currently down, but I'm seeing very encouraging changes, sometimes just for a few days, like:

    - People tell me that my voice is stronger; they're not having to ask me to speak up on the phone.
    - I can sing better and on pitch (voice too weak before).
    - Some days I can tell that I'm moving faster, with foot "drop" instead of "drag."
    - Last week my (adult) daughter was staring at me. I said, "What??" and she said, "Your hands! Look how fast you're typing!" I hadn't even noticed but I was suddenly flying across the keyboard without thinking about it. Usually my hands are so numb and clumsy that I have to look down at the keyboard, I hit Caps Lock constantly, and make lots of mistakes.
These improvements seem to come and go but it's fun to see what each day will bring. I'm not sure what it means unless the veins are still open but not quite as open as they should be?? I'm working on getting my MRV and venograms to an IR closer to home, naturally I can't share about that in a public forum (nor privately, yet) but it's nice to have a diagnosis and not constantly wonder.

I'll update the tracking thread at my true one month mark. :)

Best wishes to all,
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Postby Katie41 » Wed Jul 21, 2010 6:10 pm

Pam, so glad to hear about your improvements. It's amazing, the tiny things you don't even realize have improved. I hope you continue to feel and see more improvements daily, or at least every other day! LOL!
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