Marie's Stents CCSVI

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

Postby Loobie » Sun Aug 09, 2009 4:48 am

Great, great, great!! You've inspired me to walk the whole damn thing now too!
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Postby catfreak » Sun Aug 09, 2009 8:18 am

Marie,


All this sounds great! Any improvement is definitely an awesome thing and that is progress and proof this intervention works!

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Holly - Shine On You Crazy Diamond - Pink Floyd

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 mrhodes40 » Sat Aug 22, 2009 8:23 pm

Update at 3 months out:

I have been off coumadin for 2 weeks now.

Bad stuff first: I still have neck and shoulder pain.. Loobie has talked about that as well. I believe it is the accessory nerve that probably was pinched during surgery causing this dysfunction. I am hoping it resolves but so far it has healed a great deal from the initial feeelings, but it is stubbornly stuck at a level where it is decidedly "better", but still a problem. On a scale of 1-10, 10 being terrible. it is a 2-3. Occasionally it still bothers me a lot, like a 6 for an evening but those days are rare, maybe one in 2 weeks when I do something like vacuum the whole house them mop all 600 feet of wood floor (guilty).

My stent on the right is a 12 mm; on the left 8. The left is not painful -it is the right one that hurts. Dr Dake is using smaller stents now as he has decided he did not need as much capacity as he first thought and he would see people do better in the pain and recovery department. I knew this kind of thing would be learned along the way and willingly accepted the possibility that the later surgeries would be better than those of us first in line. That was always OK with me.

The accessory nerve runs in the same sheath as the jug and carotid on each side. They all go through the jugular foramen (hole in the bottom of the skull) together. I believe the larger stent simply is pressing on the accessory nerve and possibly pinching it which makes the trapezius weak and causes the scalenes rhomboids and levator to overwork (this is a known syndrome that happens after the accessory is hurt) and this seems to fit my type of experience with this. Dr Dake has not signed up for any particular theory but he is aware of it as a possibility. Like Lew, my shoulder blade is wacky, but mine it not severe and it still is getting better it seems.

That's the only bad part........... and it is not that bad. :arrow:

Now on to the good. I got back from California on a friday, the following Friday I took a trip to my sister's place to visit for 4 days. I saw my new baby nephew and did many fun auntie things. Every day was full (fancy restaurants, Harry potter, house hunting), but day 3 went like this:

get up and get dressed go to the Macy's to buy a suit for my son who is graduating ...then decide to buy several suits so he can pick. Use the rollator for this to be safe but walk pretty good.

go to another Penney's and shop there too. try stuff on too.

then Target.

Then go to an airfield to pick up Dad who is a pilot and stand on the tarmak waving like a fool, but having ditched the rollator and using a cane cause there is no room in the car for the rollator.

Go to lunch at a Greek place again with the cane....

then go to a flight museum with my cane and wander around looking at plane things and look at the b-something bomber that was giving rides and shows cause that's what Dad likes for 1.5 hours (no where to sit either), then when Dad flew away glance at the watch and realize it is 15 minutes to Julie and Julia, shall we go? Mom and sis look at me as I am the deciding factor. Let's go!!

Off we go and I take my cane to the movie rather than the rollator, but I am walking VERY slow at the multiplex cause I am pretty tired by now and do not want to fall. We watch the movie and walking out I trip but do not fall even though it is just the cane--yeah!-- then we go to dinner...then back to the motel.

Guys this is a huge day for me to have done. I did not get too tired. I was tired but not MS tired , as in "I can't stand another minute get me outof ehre NOW" tired, do you all get that? not only that, there was a conspicuous lack of the usual "Marie, you look beat, let's call it day we can go home and watch DVD's" And this came after two other days of fun.

no naps. walking without my rollator just a cane for goodness sake. I did have a brace on my foot.

I still felt disabled all day. it is not like I felt strong. or zippy. on my feet it is just that I had stamina that I did not used to have. it's just that I kept going. the feet kept on going one in front of the other and I did not collapse.

The next day we went home and we stopped for lunch on that trip walking a couple blocks--with just the cane-- to get to the restaurant Sunset mag said was good. (Public House, Port Townsend) When I got home I was tired, but I unpacked and started laundry of course. then slept like I was dead. :wink:

but the next day I got up and went to the mall alone to exchange and return some suits for the right size and then I got some stuff for me. I Was using the rollator though, but then I came home and cooked a goodbye meal for our son.

The next day I was tired. Really tired. "I ain't doin' nuthin' tired".

I tell you this excruciating detail because people wonder if I am "better".

I do not feel better stronger or even less tired. I still feel disabled, walking feels like a struggle but somehow some way I can do stuff I just couldn't before. this detailed description is my attempt at quantifying it, though it defies genuine quantification in such a way. how about we call it stamina.

The movie and airshow day was what I used to do in a week. I would NEVER have planned so many activities in one day. NO way. And absolutely never after 2 other days of activities with the new baby and out to lunch and dinner and ferry trips and carrying suitcases about etc etc. And frankly if we tried to tough out such a day the others would have given up; they used to SEE the fatigue...they'd take me home claiming they were done.

so stamina is my word. I have much more stamina. I am sleeping well too.

And I still do not use baclofen or requip. The spasms are still there but a teeny fraction of what they were. Like this: I used to take both baclofen and requip at bedtime and then I'd still get flexor spasms in the night. A flexor spasm is a spasm in a flexing muscle in my case usually the legs would pull up hard in a "marching" way and or my back would arch hard and or my stomach. So I'd suddenly "pull" into this twisty pretzel situation right in bed. If laying on my stomach. the knees pulling up would force me up onto my knees. These wracking spasms used to come in jags where for a half an hour or more I would have this happen every 10-15 seconds--hundreds of spasms. And that was after the medicine. Sometimes I'd get up and take more then take another run at bed/sleep in half an hour.

now if I have any spasms at all. and I often do not, I might have 2 or 3 very light spasms (if I lay on my back especially) that I can relax away with my mind, or just turn over and have it stop completely--and that is IT. No more. I can't tell you great this is in my world to have the spasms be so manageable and no medicine. I did not even take any baclofen on the trip...

urgh what a long thing. I hope this absurd detail is helpful in understanding how it can be that feel as if I am doing better without really walking any better or feeling less disabled? :oops:
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 catfreak » Sat Aug 22, 2009 8:43 pm

This is just great news Marie. I am so excited for you. Now, I am ready to go and get mine done!!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

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 Loobie » Sun Aug 23, 2009 5:05 am

Absurd detail, have you seen some of my blog postings!? :lol: . We sound a lot a like in just about everything. The not 'feeling' unsick, but yet able to accomplish a little more and a little more. It is VERY hard to quantify because how can you quantify "I could put forth more effort today, I know I was trying really hard, but I couldn't before, yada, yada". The 'improvement' is wierd feeling that's for sure. Your statement about 'walking is still a struggle' but someway you go a little farther. That's what I'm dealing with. I want to feel stronger so I can say "I'm feeling better". But I don't really yet and it's mostly things that are so hard to put your finger on like being able to go a little farther and recovering a little quicker.

Thanks so much for sharing. The shoulder is still a complete f#*%^er and you're right, that does start to wear you out. I got more from your explanation of where the accessory nerve actually resides than I did from that paper. Sometimes those things lose me and I appreciate your explaining it clearer. My wife said "you've got a pinched nerve somewhere", and I guess she may be right! She's so new to the RN thing, but she seems to really have an old nurses understanding of stuff. I tell her it's because she did her schooling over the age of 40 and REALLY paid attention :D . Usually that gets me hit, but I think part of it may be right. She wasn't worrying about going out and doing youthful things. She was very dedicated to learning.

So it's good to hear Marie. I know it's huge when you don't have to use your rollator. You probably feel like it like I do about my cane since I've never had to use a rollator. It's all relative. You keep having those days where you accomplished more than you thought you could. Those are fun and soul satisfying. I think I will be getting more stents this time and hearing that they will be smaller and less irritating is music to my ears. I told you about the lump behind my ear. I'm starting to conclude that maybe due to it's bigger size, that that is what is pinching that nerve; in the jugular foramen as you stated. That is probably clearance through bone, so swollen things are going to pinch other things (that's my medical jargon!) Every time I put shaving cream on and go over it I keep thinking "is that supposed to be like that?". I guess I'll find out in a few weeks!
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Postby Sharon » Sun Aug 23, 2009 7:40 am

What a grand story, Marie! I think the detail is important not only for the readers but for the writer. We are recognizing that something good is happening...you can't see it, but you can feel it....it is hard to describe, but it is there.

You, Lew and I with our neck and shoulder issues...whew! Like you, I knew that being one of Dr. D's first patients, he was going to learn from us...and he has! My shoulder is doing much better...still have a weakness in the left arm and my range of motion is not back to before the procedure. (Funny thing is though, my range of motion is better than some of my friends who have arthritis..so I am not complaining too loud!). I am doing some exercises with a theraband which concentrate on the posterior deltoid and the lateral rotators. I will send to you if you would like. Tomorrow I go back to the chiro..I think the two ribs which the muscle spasms had misplaced, are okay..this is just a check-up to make sure. Then to my six month neuro appointment---oh, my--that should be interesting :roll:

Marie, I wonder how many MS'rse can say they were ever able to get off the Requip and the Baclofen once they started the medication? I doubt there are many or even a few. You are "one of a kind"--I am so happy for you!

Awaiting the next chapter.... :)
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Postby mrhodes40 » Sun Aug 23, 2009 8:46 am

Cat not long now!

Sharon you are right it is nearly impossible to describe. Lew touched on it yes I'm trying hard (placebo anyone?) but I couldn't used to do that much. If I tried I would get so exhausted I'd finally admit I could not go on and 'leave me at the hotel so you can all go; l I'm too beat'. I'd get so tired I'd fall asleep. It just is not like that, its different even though I am still really disabled.

Lew said
You probably feel like it like I do about my cane since I've never had to use a rollator


One thing I have learned about the old MS: No matter how bad you feel about your "new" level of function, no matter how you feel you've drawn a line in the sand, it used to always get worse and I'd be horrified all over again. An MSer was always wise to appreciate how well they function today because the day would come when they would see today's function a prize to wish for.

My sincere hope is that we can stop that crazy slide and just adjust and cope with how we are; Maybe gain some skills or equipment that makes it possible to live life with challenges but not to have to worry about losing even those.

That will be a blessing; to not have to worry about a wheelchair, the ground I have not yet crossed, to think a bioness or walkaide might be the way I get around from now on, and that I'm done losing ground! fingers crossed on that!

thanks for the input guys!
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 LR1234 » Mon Aug 24, 2009 2:11 am

Hi Marie,
Its good to hear that you are still feeling better than you were pre-treatment!

A quick queston I was thinking about Lymph nodes and I have read there are quite a few of them near the internal jugular veins, if these nodes are swollen could they be the reason why the jugulars may be occluded? or cause the jugulars to collapse again after the treatment if a balloon procedure is done? I just wonder if the lymph nodes may be contributing in someway to blood flow issues (especially if MS has an element of chronic viral or bacterial causes).
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Postby mrhodes40 » Mon Aug 24, 2009 4:55 pm

LR that is an interesting idea and I do think perhaps such a thing could possibly be a blocking factor. It is known that it is possible for a person to have a tumor, like if they had lung cancer for example, that blocks the superior vena cava.

This syndrome causes confusion and neuro problems and should be repaired even though it will not prolong life or cure the cancer. So in that case overgrown tissue nearby causes a stenosis of the SVC which causes neuro issues. This is a known syndrome.

I don't see why a lymph node couldn't occasionally be the offending factor in CCSVI, but no one is saying that they have seen such a thing, so that is speculative.

In fact the Zamboni materials so far sort of indicate a anomaly of the vein itself, like a twist or an atresia or something like that which is a factor about the vein itself, and Dr Dake has seen, it seems, a lot of us with these tight necks where the neck tissue in general is just smashing the jugs flat.

I think it could be anything that hinders venous drainage, shoot, if you were a person who had an accident and your neck got hurt and the vein hurt in the process so that over the next years it developed a scar that would to it just as surely as a twist. It's all in the location of the blockage not about what caused it.
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 LR1234 » Tue Aug 25, 2009 3:20 am

Thanks for answering my question Marie (and sorry for kind of hijacking your thread) Speak soon

L x
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Postby Sharon » Tue Aug 25, 2009 1:01 pm

Marie wrote:
and Dr Dake has seen, it seems, a lot of us with these tight necks where the neck tissue in general is just smashing the jugs flat.

Yesterday I was at my chiropractor ...since learning of the CCSVI theory and reading the research papers, he has been anxious for new information. He had a long conversation with Dr. D....both of the good doctors were interested in each other's experience with MS. My chiro treats about 50 MS'rs...he has seen some who have greater success with a chiro adjustment then others. His mother has MS and he has treated her for years...she is in her 70's and is doing quite well. So, now he is wondering that the people who may have a "kink" in the vein, if through adjustments, he is been able to keep the vein open. Interesting thought, and of course he will probably never know. I asked him about the tight necks (this was before I saw this post), and he said absolutely..everyone has space issues throughout their body.
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Postby Arcee » Tue Aug 25, 2009 1:32 pm

Marie, I missed this thread since it doesn't start with 'CCSVI' but I wanted to chime in to say that I think your news is really encouraging. Congratulations! I also really like the term 'stamina' - - I think that captures well my post-surgery experience too.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby mrhodes40 » Tue Aug 25, 2009 2:44 pm

Thanks guys! interesting on the chiro -space issues- I like the phrase.

One thing they've learned from the MRI and venography is how varied these things really are in individuals, we ARE all unique.
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 Loobie » Tue Aug 25, 2009 3:33 pm

mrhodes40 wrote:One thing they've learned from the MRI and venography is how varied these things really are in individuals, we ARE all unique.


How fungent of a statement. Some of us have twists, some of us have spider collaterals, and some of us have the appearance of two jugs on one side, and some have both! Everyday I keep reminding myself that this is learn as you go and many of us may require multiple episodes on the table after something is learned. Hey, as long as we keep moving forward.
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Postby mrhodes40 » Fri Aug 28, 2009 10:06 am

Lew said
Everyday I keep reminding myself that this is learn as you go and many of us may require multiple episodes on the table

Absolutely.

How many people do you know that have had several knee surgeries?

Or a second operation after a hysterectomy to release adhesions?

I'm not hoping for such a thing I'm just saying even in the arena of "known" medicine there is the possibility of repeat surgery as more is learned about an individual circumstance.

I am just grateful to have the first pass attempt. Since I had nothing at all but a long look at the abyss of severe disability complete with loss of independence as I had NO treatment options left at all, I am Soooo grateful to have hope and something to try.

I really believe that this treatment will evolve a lot over the coming years. The treatment people get in 5 years will be better and different than what we have had available to us today.

That's OK. I am just glad that it is here and we are finally moving

I keep reminding myself that instead of CCSVI we could have heard about "amazamab" (amaze-a-mab) which they thought would stop MS in its tracks last December. If such a thing were thought to be true it would still be years and years before they found out even IF it COULD stop disability rather than just appear to reduce lesions.... I have ridden that train so many times I can't even count.

We are so much further down the track with this...........
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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