Marie's Stents CCSVI

Tell us what you are using to treat your MS-- and how you are doing.

Postby Loobie » Sun Jul 05, 2009 12:14 pm

I will use this 4th as a barometer for camping trips for sure. This was my hardest to date, by a long shot. There were plenty of times my legs just said "I"m done", and I was weak and could hardly walk more than 50 ft. or so a time or two the rest of the day. The only good thing was that the weather showed great mercy. We were in jeans and sweatshirts on the 4th! It was 66 degrees and overcast. But I did do it, but it was so hard I don't know how much I'll camp again if things don't improve.

It sounds like you had some significant 'in retrospect' improvement. Hey, as long as the walking's not getting worse and you're able to do more than you could weeks ago, you got it goin' on. This is all so wonderful to hear. I'm in a horrible place (for me) right now and love reading this kind of stuff. Thanks Marie!
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Postby catfreak » Sun Jul 05, 2009 4:51 pm

Marie,

Sounds like you had a wonderful holiday weekend with your family!

I love the really good days like that. I will tell my husband "can you believe I am still going strong or I could not have done this last week".

Maybe your good days are here to stay and your walking will get better over time.

Cat
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby CureOrBust » Mon Jul 06, 2009 7:46 am

Marie, I know my walking can get better or worse day to day. One of my "measurements" of my status, is how the walking is after walking for an extended time. It would appear, that it may be possible with your improved stamina (or it just fatigue?), that your walking will not deteriorate as quickly as before? a possible blessing to be counted?
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Postby peekaboo » Mon Jul 06, 2009 8:13 am

Cure wrote:

that your walking will not deteriorate as quickly as before? a possible blessing to be counted?


If your fatigue is failing and you are able to walk or do any exercise a little bit each day I would think then you will get stronger a little bit each day. You are on your way.
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Postby mrhodes40 » Mon Jul 06, 2009 1:48 pm

So far walking is not seeming to get better but I have only been off bedrest like 10 days :lol: Let's hope it does get better and better....I can't wait for that
m
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Postby mrhodes40 » Tue Jul 14, 2009 9:44 am

...............and I'm back on bedrest or at least light duty. I got a thrombosis in my calf so no ellipse for me. It happened because I had a huge bleed in my calf after I was sitting in a chair and pulled my legs up in a repositioning and smacked my calf on the bar under the chair--it bruised as those things do on coumadin, but this one kept growing until it was covering my whole calf. Then it kept refreshing itself, a chance tapping into the spot turning over in bed and it got all blue again, a tap into anything and it hurts and starts over. Then finally the spot that started it all got a big clot in it. This is not a deep vein thrombosis it is nearer the surface so it is not "dangerous", but painful and requiring--yet again-- less activity :evil:

I asked doc how did this happen? and she said coumadin makes it less likely to make a clot but once one starts it makes it harder to clean up because coumadin blocks one of the enzymes that breaks clots down too.

SO, I am on lumbrokinase in addition to the coumadin and getting blood work 2 times a week.

Comfort wise, my neck still hurts on the right. The left is fine. This is greatly improved by not typing on the computer for a day--hard to do! I know Jeff seemed to get over the hurting part better than I have done. Both stents occasionally hurt if I twist my head too much or something. ie last night at midnight the smoke alarms for some reason decided they need a new battery.. CHIRP CHIRP CHIRP!!...... what the heck is that ......CHIRP CHIRP CHIRP!! wandering around like a sleepy goon I was right under it when it went off and my head popped up and around to look.........OUCH! and the stents made themselves noticeable. They feel about what I have come to know as "normal" today, but I know I have stents personally. They are not totally un noticeable. It is not a big deal discomfort wise though, I'd take this any day over MS progression!

I also still have slightly limited range of motion in my right arm, the left one is normal. But the right arm was the broken one so I can't say how much of that is simply lack of complete rehab there...I was using it in a strange way before the surgery (lifting it with the trapezius according to rehab doc) and that does not work now, so it does not go up well, say to put in a barrette. My left arm was limited for a long time but it is really good now. I can lift it up high to do whatever.

Enough of the complications!!! :evil:

Now the good stuff:
spasms are different and changing still. They seem to be evolving. I stopped taking Requip and no trouble at night without that. I have dropped the half baclofen from my 'one and a half' and suspect a half will be fine by itself.

I have not had any strong head to toe spasms in bed for a long time :D I used to wake up and every time I tried to roll over I'd freeze up partway there until I'd relax so it was a many step process to get out of bed. like this: start to roll over and the legs tight down, the low back freezes and arches my back HARD and my stomach tightens down so hard I marvel at my strength and wonder if this is good stomach exercise..........then I relax, I'm halfway turned over.....then I attempt to continue the roll onto the other side and everything fires off again. I have to relax again then comes the big roll out of bed and the right legs stiffs out like a ballerina while my left leg, "lefty the good", hits the floor and holds me up until that last spasm is done. And frankenstein's ballerina has gotten out of bed.

I now get out of bed with very little spasm, maybe 20% of what there used to be. :D The back arch and stomach squeeze ones are gone, and I think this may actually--I am not kidding--be resulting in some weakness!! I am going to have to do stomach crunches to make up for the lack of automatic ones!!!. :wink:

I still have a little bit of leftover restless legs, which means an uncomfortable feeling while resting, such as in bed, that compels movement of the legs (not spasm). There's not much left, and as I said I stopped taking the requip and this seems to be fine with my body! this is a big improvement. In the last 15 years I have only been off requip for a short period when I had a temporary lessening of symptoms during my years long stint on abx.

I have not yet noted changes in walking but as queen of complications you can't expect me to do everything! YET, that is...

I can't report walking changes yet, but I can say that a huge part of my walking issue with my right leg is spasticity in that the knee does not want to bend so it wants to stay stiff out straight when I try to walk--and the foot is dropsy so that side is really hard to drag around . The knee does not yet seem to be bending more easily so far as a result of the reduced overall spasticity...it is still really stiff. I HOPE this reduces as the other spasms have if I give it a little time!

I feel pretty good in general and when my INR got high and we reduced my coumadin I felt quite a bit better so I assume once I am off that there will be more energy and things.

So I expect really good days ahead when I can get off coumadin. And the reduction in spasms is really good news. I am hopeful more changes will come in time. Just a little difference in the walking spasticity would make a big difference . Fingers crossed it is on its way!

I want to add that I am glad I did this, and I still really notice the improved function in the heat. I can sunbathe and feel pretty good walking in after even an hour in the direct sun....big changes there. the last time I got my sunshine vitamin I was out for about 2 hours and was shocked that I really walked back into the house the same way I walked out, bad but not worse than usual... It is tarting to feel normal to be that way 8)

I also still enjoy normal ability to keep myself warm: no freezing in the car when someone else is cooking.

The spasm reduction is feeling normal too........I can see pretty soon I won't even remember how it used to be 8) 8) 8)
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Wed Jul 15, 2009 6:45 am

Marie - thanks for the detailed update. Your recovery has been more difficult than the rest of us, and I think it is important for those thinking about the procedure to understand this is not necessarily a "walk in the park". Sorry to hear about the leg thrombosis -- just think though --only a few more weeks and hopefully you will be off some if not all the blood thinners. :lol: :lol: Yea! I am thinking that some of my bruises are where I might have a weakness in the vascular system...maybe just exertion in the area causes the bleed.

The "good stuff" - wonderful!! Doesn't it feel great to notice an improvement?

I am going to have to do stomach crunches to make up for the lack of automatic ones!!!.

Pilates is great for the core strength. I am still unable to do a postion called the "100's" because of my shoulder issues, so we just modify it a bit.

I feel pretty good in general and when my INR got high and we reduced my coumadin I felt quite a bit better so I assume once I am off that there will be more energy and things.


My INR has stabilized..I am on 5 mg M<W<F<S<S - 7.5 mg T<Th. It will be interesting to see how much the Coumadin has affected our energy levels.

Marie, it is all good - "your movin' forward" - something that I do not think you have felt in a long time
Sharon
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Postby mrhodes40 » Wed Jul 15, 2009 9:56 am

:D yep forward is good. I had coagulation issues before I ever started this adventure so my doc was not surprised we ended up with trouble there in fact we'd been complimenting ourselves on how easy it hd been...oops!

I'm fine I am just frustrated beyond understanding that I am not on the ellipse. You lose a lot of muscle when you are on bedrest.

But hey my stomach is fine!! all healed up!

I understand the idea of vascular weakness I too have bruises where no known thwack ever was. :?

I am really big on disclosure and honesty my posts reflect that....

but I'd do it again in a heartbeat.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Islandgirl » Sun Jul 19, 2009 9:42 pm

Marie, I am sooooo happy you are seeing continued improvements. I just know that in the future when you can really begin to move and tighten up the improvements will be exponential. IG
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Postby mrhodes40 » Sat Aug 08, 2009 11:51 am

Return to Standord Update:

On August 4-5 I went back to Stanford. We drove from WA.

I had a CT scan as my insurance did not pay for a repeat MRV---well the first one was 8,000 so I understand that as a CT is like 1 grand. SO I had to take high doses of benedryl and steroids again to tolerate the iodine dye. That is 50 mg benedryl at 6 pm, bedtime, and the morning of treatment. that is a LOT of bendryl, total 6 times as much as a sleeping pill dose.

Big change there: when I got the benedryl for the venograms/surgery 2 months ago my bladder shut down I had to get a catheter as soon as I got in to the admitting.

THIS TIME; My bladder worked well all night long. No problem! I slept great woke up like 3 times to go to the bathroom then went back to sleep. I was totally surprised as I EXPECTED to be miserable and to need to self cath. I was shocked in part because I had not noticed anything in my daily life to suggest big changes were happening there.

As far as walking, Stanford trip one on may 18; I made it to MRI by myself with my rollator but only just barely. Later in the day I got an orderly to push me in a chair to dopplers and Angela came and got me for Dr Dake in a chair.

This time I was prepared to get the orderly, but I decided on the spur of the moment to try it and get one if I needed one. I walked to CT, at least as far as the MRI had been, and I was OK.

Then it came time for the lab, again got there with the rollator no trouble. Then walked out front for Hubby to get me...... and we immediately went shopping at Safeway for groceries and I PUSHED A CART... in the store.... for half an hour! Then we returned to the room and unpacked our food rested for literally only half an hour and then I was dropped off at the front of the hospital again for the after noon tests. Doppler was first; third floor across from f unit, I got there with the rollator again.
\
I had assured myself I could use an orderly-- but I was fine even though this was like the 4th big thing I did that day. I did not walk fast but the leg just kept working its same bad way instead of quitting on me. I felt tired and disabled as I walked, per usual but I was able to keep going.

after that test--I had a wonderful guy who had read the Z papers and understood what we are on about here (dopplers were normal BTW)-- I went to the cafeteria and got a soy yogurt and sat in the sun in the courtyard to eat. Sharon called me on the phone and we had as lovely chat...using up the battery.

Then it was time for the MRI and it was in the Blake Wilbur building. I saw a building out the door where the sign poipnted and thought that was it....
Noooooooo. Blake Wilbur is through the courtyard, past the building you see, through the parking garage, across the street and down. If I'd have realized I'd have gotten an orderly cause I'd have assumed I could not go that far, but by the time I realized the building I had thought was it was not, and I had to go across the parking garage, I was partway there so I decided to go for it.

This was outside, in 80 degree heat at 5 in the afternoon. 8O

I did it with an even but slow pace, feeling disabled and like it was hard but the last step of that walk was nearly like the first so in other words not stumbly and risky walking as I would have expected.. Bill estimated the walk at 1/4 mile and the total day's walking at at least a mile. He's a track jogger so I believe he is probably close. It FELT like 5 miles but that's just me :wink:

the next morning I walked to dr Dake's office as well. From the front of the hospital it is probably 1/4 mile. I walk slowly and with effort--sort of DELIBERATE if that makes sense, but there just seemed more assurance and almost none of the feeling that "I am going to trip any second".

Everything was normal and I am off coumadin, follow up in 10 months. The office is BUSY. we were kind of a squeeze in...he had a guy on the table (in the OR) and had just gotten out of an emergency staff meeting....

Back at home, I took the opportunity to drive myself to the lab. I put on shorts expecting afternoon sun though it was only 68 and cloudy as yet. I got in the car and was all the way to ALbertson's, 11 miles before I realized I DID NOT HAVE THE HEAT ON IN THE CAR....FURTHER IT WAS BLOWING COOL AIR ON ME THE WHOLE TIME....AND i WAS NOT FREEZING!!!! or spasming or anything. I felt cool but I was keeping my body warm.

This has been one of my "100%" symptoms. Get in the car, freeze, so turn on the heat no matter how anyone else feels about it....unless it is 90 and I already got too warm, then demand the AC :roll: . I just could not regulate my temperature. SOOOooo much better now.

I get asked if I feel lke my MS is "gone". I don't FEEL that different and these changes are subtle. MY Bill thinks I walk better and obviously the distance I CAN walk with the rollator (a walker type device) seems greatly improved , but I do not have a FEELING of being "cured" nor do I feel like I am less disabled. I still walk badly, but I have to tell you; the last time I tried the mall a year ago it was awful, I am thinking I may try it again soon. I think I might be able to do it.!

I am also thinking of the walk aide or bioness, that process got cut short for stanford so I may be ready to take that on now. I used a walkaide in the office and for a day at home, it was OK, but I kept knocking the tilt sensor off. I may try the bioness too before making a decision The goood thing about that is that the bioness uses a tilt sensor on the shoe and I can rent it for a w hole month and see IF I like it.

my insurance paid them off already at Stanford!!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby peekaboo » Sat Aug 08, 2009 1:34 pm

oh marie - it is so good to hear from you and all your positive news :!: I am going to share your report w/my family (sisters & parents). Since you and I are the later types of MS. They are very supportive of the CCSVI theory and intervention and impressed with all U TIMS folks our there. I am almost to tears in a happy way....

H
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Postby Sharon » Sat Aug 08, 2009 2:29 pm

Marie -

I am really impressed - walking to Blake Wilbur from the hospital. I was a "weenie" and had the golf cart shuttle pick me up.

So many good news items: less spasticity, regulation of your body temperature, the bladder improvement.

You wrote:
I get asked if I feel lke my MS is "gone". I don't FEEL that different and these changes are subtle.

I feel the same - the changes are very small, but I believe they are starting to accumulate.

Now that you are off the Coumadin, have you decided what supplements you are going to be taking? Also, what about the Copaxone? I decided to go back on LDN at 2 mg a night.

Looking forward to more great news.
Sharon
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Postby cheerleader » Sat Aug 08, 2009 3:20 pm

Great report, Marie! Glad you got the cool young doppler guy this time (instead of the nasty gal). He and Jeff hit it off too, and he was truly excited to read the Zamboni and learn about all of this.

Thrilled to read about your walking adventure, and your bladder change since last time. It's good to be able to compare from your last visit to Stanford. Small, but important changes! The body temperature regulation really makes a difference!

And I love to hear about the decreased spasticity. Jeff is of his baclofen, too. Sleeping thru the night without waking to pee, feeling really rested during the day.

I'm so glad you're done with the blood thinners!!! Now, back to the elliptical and walking, and more healing. Brava, my friend.
xox,
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Postby mrhodes40 » Sat Aug 08, 2009 5:30 pm

Thank you dear friends!

Holly
Since you and I are the later types of MS.
let's keep hoping for more as we go forward... give it itme to heal and adjust to things. If I can just hold the line I don't have to tell you what even that kind of victory would bring...you know

sharon
have you decided what supplements you are going to be taking? Also, what about the Copaxone? I decided to go back on LDN at 2 mg a night
Cop controls my arthritis--I have that disease too I am LUCKY it helps that disease. I am just revamping my regimen. I am taking fish oil 3000 of dha/epa for arthritis and general antiinflammatory, vit d 8k, NAC for glutathione, CA, MG, MULTI vitamin code raw wise woman formula (probiotic in it too!!) chlorella, hmmm. think that's it. my hope is to wean off the cop with ample arthritisd supplements

cheer
Small, but important changes! The body temperature regulation really makes a difference!
Yes I have to be content with small changes for now Venous ulcers heal about 50% of the time in 4 months...that suggests this may take some time. I bet by then I won't even remember how I used to be. :lol:

thanks!!
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Sat Aug 08, 2009 7:31 pm

Marie wrote:
Yes I have to be content with small changes for now Venous ulcers heal about 50% of the time in 4 months...that suggests this may take some time. I bet by then I won't even remember how I used to be.


I hope we can delete our"before posts" so that we will not be reminded how we used to be. H(ope) and H(ealing)

Your supplement regimen is similar to mine -- I also take Zyflamend a natural anti-inflammatory and COX-2 inhibitor. I have taken this for about fifteen years...supposed to deter arthritis... I do not have arthritis, but I will not go out on a limb and tell you it is because of the Zyflamend. :wink:

Sharon
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