Hi,
Glad to hear you are safely home and still enjoying improvements,
and hope the improvements continue for many months to come.
How is your daughter doing? I am certainly sending positive thoughts & prayers to both of you.
Thanks for posting. It is good to hear about all your experiences.
QueenMum
Katie41 in Poland!
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newlywed4ever
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Katie41
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6 weeks post procedure:
I was so excited on Mother's Day to walk several places without the crutches at Disneyland and California Adventure! My walking is much stronger and my balance much better! I would never walk in a crowd, even with the crutches. Mother's Day, I walked with and without crutches in A CROWD! I wasn't afraid I would fall or get knocked over!
Algebra, which was always difficult for me to understand, is now quite accessible to me. I can even think algebraically - is that a word? LOL
I was so excited on Mother's Day to walk several places without the crutches at Disneyland and California Adventure! My walking is much stronger and my balance much better! I would never walk in a crowd, even with the crutches. Mother's Day, I walked with and without crutches in A CROWD! I wasn't afraid I would fall or get knocked over!
Algebra, which was always difficult for me to understand, is now quite accessible to me. I can even think algebraically - is that a word? LOL
Good news, Katie. Can I borrow your crutches? Grin.
I do have to wonder at your oxygenation, though... spending the day at Disney would make me dire.
Algebraically works for me. I did not even have to train the infernal spell check on here - that cannot allow uni0n to be spelled U-n-i-o-n without the dashes, and puts squiggly red lines under perfectly legitimate words like phlebologist, or humour, or rancour, or grey.
I do have to wonder at your oxygenation, though... spending the day at Disney would make me dire.
Algebraically works for me. I did not even have to train the infernal spell check on here - that cannot allow uni0n to be spelled U-n-i-o-n without the dashes, and puts squiggly red lines under perfectly legitimate words like phlebologist, or humour, or rancour, or grey.
My name is not really Johnson. MSed up since 1993
Katie, that's really nice news to hear!
So could it mean I would dear to go into that Rocket of Disneyland Paris again?! ...my husband wants absolutely to go to Disney with the kids this summer...huh, no don't think so...already back in 1999 it scared me to death from its violence - even without MS diagnosis
So could it mean I would dear to go into that Rocket of Disneyland Paris again?! ...my husband wants absolutely to go to Disney with the kids this summer...huh, no don't think so...already back in 1999 it scared me to death from its violence - even without MS diagnosis
) and says he will not even attempt to play chess with me then -
Katie41
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Thanks, you guys! It's always so surprising to be able to do the "little" things that you could do before MS.
Zeureka - I didn't go on any rollercoasters and held (supported) my neck when on Pirates and anything that jerked at all. My daughter, however, went on a large rollercoaster and seemed to do fine. Not sure I would have done that, though.
AmcG - I teach 6th graders and have always struggled with the advanced algebra. Now, I understand it and even chose it to do problems I wouldn't have used it for before. I really surprised myself.
ndwannabe - gee, maybe I'll try scrabble with my very smart son-in-law! LOL
Johnson, not - I did great with the oxygenation. Every once in awhile, I still have some difficulty with that, but didn't that day. So, will have to keep the crutches for the moment. Can't wait until summer and swimming. That will be a real telling point, since I always do much better when I'm exercising.
Badger - it IS such an exciting time!
Magoo -
Zeureka - I didn't go on any rollercoasters and held (supported) my neck when on Pirates and anything that jerked at all. My daughter, however, went on a large rollercoaster and seemed to do fine. Not sure I would have done that, though.
AmcG - I teach 6th graders and have always struggled with the advanced algebra. Now, I understand it and even chose it to do problems I wouldn't have used it for before. I really surprised myself.
ndwannabe - gee, maybe I'll try scrabble with my very smart son-in-law! LOL
Johnson, not - I did great with the oxygenation. Every once in awhile, I still have some difficulty with that, but didn't that day. So, will have to keep the crutches for the moment. Can't wait until summer and swimming. That will be a real telling point, since I always do much better when I'm exercising.
Badger - it IS such an exciting time!
Magoo -
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Katie41
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3 1/2 month update! What an amazing journey! My husband had me create a rating chart of my symptoms, on a scale 1 - 10. Before Poland - 168, right after Poland - 17, currently - 55.
I found out about May-Thurner Syndrome on a Monday, called local Dr. and got appointment Tues., diagnosed Wed, am having procedure this Wed, one week later!! I found out about May-Thurner, and the local dr., on TIMS. Thank you Cheer for having this terrific forum, Val for your valuable info, and CCSVI Husband for your valuable info. It all came on the same day. I figured it was meant to be.
That should take care of at least 14 more points: like left foot and ankle swelling, left foot discoloration, and crutches required! Maybe more, who knows. My right leg is quite strong and has remained so. Left leg improved immediately after Poland, but has returned to old ways.
I get blood clots in the left leg, it swells, it is severely discolored. My right leg has never done that. Now, I finally have another piece of the puzzle.
Fascinating
Katie41
I found out about May-Thurner Syndrome on a Monday, called local Dr. and got appointment Tues., diagnosed Wed, am having procedure this Wed, one week later!! I found out about May-Thurner, and the local dr., on TIMS. Thank you Cheer for having this terrific forum, Val for your valuable info, and CCSVI Husband for your valuable info. It all came on the same day. I figured it was meant to be.
That should take care of at least 14 more points: like left foot and ankle swelling, left foot discoloration, and crutches required! Maybe more, who knows. My right leg is quite strong and has remained so. Left leg improved immediately after Poland, but has returned to old ways.
I get blood clots in the left leg, it swells, it is severely discolored. My right leg has never done that. Now, I finally have another piece of the puzzle.
Fascinating
Katie41
Last edited by Katie41 on Thu Jul 15, 2010 10:08 pm, edited 1 time in total.
Excellent news Katie! That's interesting about the MT syndrome too. Great report!
Mark
Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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CCSVIhusband
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I don't typically read a lot of others reports, but I'm glad I was of help Katie ... (and happened to log in tonight and see what was going on).
Can I ask what method was used to diagnose May-Thurner Syndrome in your case (since you haven't had the procedure yet)?
Best of luck with your procedure. Balloons or stents in there (do you know)?
Short term and intermediate patency of stents in relation to MT has really been studied and you should be comfortable with them - if that's what is chosen ... vice ballooning, where occlusion rates are almost 100% in the fairly short term.
Can I ask what method was used to diagnose May-Thurner Syndrome in your case (since you haven't had the procedure yet)?
Best of luck with your procedure. Balloons or stents in there (do you know)?
Short term and intermediate patency of stents in relation to MT has really been studied and you should be comfortable with them - if that's what is chosen ... vice ballooning, where occlusion rates are almost 100% in the fairly short term.
Hi Katie, thank you so much for your report. This is great you are getting closer to the vein-puzzle of your body !!! And the scale is also a very good idea. It illustrates a trend that seems many are following after procedure: A higher up in the start, a period of ups and downs and then a kind of middle stabilisation.
Very interesting this May-Thurner syndrome! I saw on Wikipedia that it may have to do with the left common iliac vein being compressed against the lumbar spine by the right common iliac artery? And that this can cause deep venous thrombosis (DVT) blood clots forming in the iliofemoral vein in the leg (and guess can then lead to circulatory blood flow problems/symptoms in extremities, i.e. feet?)
http://en.wikipedia.org/wiki/May-Thurner_syndrome
Would you know from your experience with this Dr. what type of intervention is applied to treat May-Thurner syndrome and what are the tests could ask my generalist to prescribe to get checked on? A doppler of the legs? Numbness in right foot is worse than in my left and had for a longer period a bluish toe..but now gone.
Sorry that did not read Vals and CCSVI Husband's info. Otherwise where can I find it?
Thanks so much, Stef
!!! And the scale is also a very good idea. It illustrates a trend that seems many are following after procedure: A higher up in the start, a period of ups and downs and then a kind of middle stabilisation.Very interesting this May-Thurner syndrome! I saw on Wikipedia that it may have to do with the left common iliac vein being compressed against the lumbar spine by the right common iliac artery? And that this can cause deep venous thrombosis (DVT) blood clots forming in the iliofemoral vein in the leg (and guess can then lead to circulatory blood flow problems/symptoms in extremities, i.e. feet?)
http://en.wikipedia.org/wiki/May-Thurner_syndrome
Would you know from your experience with this Dr. what type of intervention is applied to treat May-Thurner syndrome and what are the tests could ask my generalist to prescribe to get checked on? A doppler of the legs? Numbness in right foot is worse than in my left and had for a longer period a bluish toe..but now gone.
Sorry that did not read Vals and CCSVI Husband's info. Otherwise where can I find it?
Thanks so much, Stef
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Katie41
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Post-procedure report Yes, I did have May-Thurner Syndrome. The left iliac vein was 90% occluded and was stented with a very wide, long stent. I had quite a bit of pain during the procedure and severe pain afterwards. I have a high pain tolerance (4 kids natural childbirth - one weighed 10lbs. 8 oz. and I'm only 5"3'), but I would rate this as a 10. Today it fluctuated between 4-8. The dr. said I would have lower back pain for up to two months. A far cry from the day after my procedure in Poland when I climbed 70 cathedral steps! I'm so glad that we found out about this, though, and it is now fixed.
The dr. treated me on my history of blood clots, moderate to severe discoloration, and swelling of left foot and leg. The tests could be a MRI and the venogram. He used the MRV I had at Stanford to check the jugulars. Of course, I had the venogram when he was doing the procedure.
While he was in there, he ballooned the two jugulars, as they have been restenosing somewhat. The azygos have stayed wide open. Too early to tell much of anything regarding improvement since I've been in bed most of the time since the procedure yesterday. It seems that I must give my body much time to figure out what to do with all the new flows of blood. Yesterday, it was saying, "What were you thinking???!!!". Today, it's getting used to the idea of things working correctly. LOL
Thanks again to all who post. Such info would be hard to come by if not for all of you.
Katie41
The dr. treated me on my history of blood clots, moderate to severe discoloration, and swelling of left foot and leg. The tests could be a MRI and the venogram. He used the MRV I had at Stanford to check the jugulars. Of course, I had the venogram when he was doing the procedure.
While he was in there, he ballooned the two jugulars, as they have been restenosing somewhat. The azygos have stayed wide open. Too early to tell much of anything regarding improvement since I've been in bed most of the time since the procedure yesterday. It seems that I must give my body much time to figure out what to do with all the new flows of blood. Yesterday, it was saying, "What were you thinking???!!!". Today, it's getting used to the idea of things working correctly. LOL
Thanks again to all who post. Such info would be hard to come by if not for all of you.
Katie41
Last edited by Katie41 on Fri Jul 16, 2010 5:14 am, edited 1 time in total.