Marie's Stents CCSVI

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

Postby Sharon » Wed Nov 18, 2009 7:36 pm

Don't mind a bit -- the more questions asked, the more we learn from one another.

Sharon
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Postby mrhodes40 » Thu Nov 19, 2009 5:00 pm

There is a lady in my hometown that has called me to check on my progress after CCSVI and I would love to have her talk to you, Sharon and Lew.


I do not mind at all if she PM's of course!

I won't tell anyone to do it though...... :wink:
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
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Postby mrhodes40 » Thu Nov 19, 2009 5:34 pm

Sharon said
So, when you are now walking without the cane you are having to retrain all those brain responses. You have used the cane for many years --


Yeah 5 full time years now. I want to be clear I still use the cane when I walk anywhere other than PT where they are ready to grab me. I am TRYING to walk in the house without using the wall or anything to practice. I only succeed some times. I went to the mall today and was frustrated I felt too scared to go without my rollator to be really sure (I can't fall and break my arm again) 10,000 repetitions. I believe it. this is very hard.

now anyone want to wager how much is mental and how much physical :lol: :lol: :lol: :?:

Gibbles said
I'm about the same as you especially with the morning stiffness and the standing up stiffness and the spasms. My eye deficit is also very rare. In fact I'm going for days and days without noticing it at all. At any rate I really hope that the bioness machine can assist in retraining your walking. I wonder if they have a bioness skiing machine!!


Alex did your pre stent spasms resemble mine: they used to fire off about one every 10-20 seconds when I went to bed and they'd do that dwindling down over 30-60 minutes or so as I fell asleep and my bedtime drugs kicked in. I felt WRACKED by spasms I tell you!! I'd take the drug and that would calm them but they'd not go away altogether; they could start back up any time. I'd often wake to go to the bathroom and they'd get going again, sometimes I'd have to take a second dose to go back to sleep and I'd lay there trying to will those things away somehow and hoping not to wake hubsy. Ugh.

During the day I would get them too. Occasionally just standing I'd get them the knee would just yank itself up for no apparent reason and whack whatever was in the way; an open drawer, countertop whatever. Once I had one that attacked when I was standing next to the couch and as it fired off my foot got stuck under the bottom of the couch but the spasm went on, twisting my knee till it popped. It hurt for weeks after that. It was like dealing with a physical rebellion, I didn't trust my body at all.

Having these be gone cannot be understood by persons who don't have them. I don't know if everyone will get this change, I know Holly in the 2 months we had to talk about it did not notice a change, but then again, this did not really kick fully in until the last few weeks for me though it has been improving this whole time.

Sharon has the right of it the changes are subtle almost unnoticeable until they accumulate.

But anyway I just hope that if your spasms were like mine were and the change you have is really similar maybe this is something others may look for, but I am not sure any others with stents had these like we did... I'm pretty sure Lew and Sharon didn't have them.
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 gibbledygook » Fri Nov 20, 2009 11:37 am

Marie, I never had day spasms but the night spasms were a nightmare. I would count every 7 seconds and my right leg would jerk around, keeping my wide awake. This would carry on for hours with the baclofen fairly impotent. I guess on average the jerking would carry on for about 2 to 3 hours before I could drift off. I sometimes thought and my husband is convinced that the baclofen actually made the spasms worse! What did work was half a bottle of wine or more. In fact I was something of a wineo after the spasms started 5 years ago. Now I don't need to be drunk to get to sleep!! I still get a few spasms and last night I needed to crush the offending foot/leg with my other leg which immediately calmed the spasms down. It is like a liberation to be able to sleep.

Realistically, the idea of going skiing is ridiculous but I still harbour a dream that maybe in a few years...
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby mrhodes40 » Fri Nov 20, 2009 2:19 pm

Realistically, the idea of going skiing is ridiculous but I still harbour a dream that maybe in a few years


I know, me too. I plan to try to do something if I can get functional enough, perhaps the 1/4 mile cross country trail at Levenworth Washington for example, it is not the thrill of a double diamond downhill run, but at least I would be out there. I have a hard time imagining it because I would need minimally a bit of knee bending skill which right now seems impossible.

I read an article about a MS lady who learned to do snowboarding because her weak leg could take a ride with the strong one doing the work... if I think about it, it sounds good in theory, but I imagine I'd spend a lot of time plowing the snow with my face if I tried to do that in reality... :lol: :lol:

Thanks for adding your spasm experience to this thread for readers! Yours is so like my own. It is incredible to not have them, the stent surgery was worth it for that alone.............

I still get a few spasms and last night I needed to crush the offending foot/leg with my other leg which immediately calmed the spasms down


You are a couple months behind me if I have it right so that may go because mine kept getting less and less until the current level was reached. Even 9 weeks ago when I started PT I still had some, but they were manageable with tricks like yours.

Think of this Alex, the bioness zaps my nerve in my leg. That, in the old days, would have sent my knee to my chin. NO WAY I could have done it, now I wear that for hours per day. I sometimes have a feeling like a spasm might go-I know you know what that is-but it never does. I just can't believe 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 catfreak » Fri Nov 20, 2009 9:38 pm

Thank you Marie! You are the best! I will call her.

Cat :D
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 catfreak » Fri Nov 20, 2009 9:40 pm

Thank you to Lew and Sharon too!!! I feel so lucky to be a part of this community!!!

Cat :D
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 MaggieMae » Mon Nov 23, 2009 10:40 am

My husband wants to have this procedure in the hopes that his spasms will subside. That is basically what he is hoping for - no more spasms. They are terrible and the baclofen does little to help them. We are just hoping that we hear from Alex soon. I know, I know, they have not forgotten you. But, I'm really getting worried.
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Postby mrhodes40 » Tue Nov 24, 2009 3:50 pm

I hope it works MM! So few of us spasmy types have done it, it will be interesting to see how that develops for him.

It took a long time after stents to really be full force. Holly didn't feel it in her 2 months, I happen to know because we were actively emailing. It may be true with time she'd have had it gone too, but I don't know.

I spoke with my trusted rehab doc about it and asked if based on her understanding of spasms did this make sense to her she said no because the spasm phenomenon has to do with the lack if inhibition from the CNS and she did not readily see hopw this procedure would cause a change there, but she can see how un spasmy I am
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 cheerleader » Tue Nov 24, 2009 4:09 pm

mrhodes40 wrote:I spoke with my trusted rehab doc about it and asked if based on her understanding of spasms did this make sense to her she said no because the spasm phenomenon has to do with the lack if inhibition from the CNS and she did not readily see hopw this procedure would cause a change there, but she can see how un spasmy I am


but what if the clonus/spasms is due to ongoing cerebral diffuse hypoxia? I really am thinking this is the answer to the short term improvements we're seeing...fatigue, sleep, spasms, relief of cog fog. Any thoughts, Marie?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Tue Nov 24, 2009 4:23 pm

well obviously there has to be an angle like that because it is happening to both Alex and I.

What it means to me is that a lot is really not understood about these mechanisms and they are working on theories, useful as far as they go but potentially flawed.
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 » Tue Nov 24, 2009 6:03 pm

Marie wrote
What it means to me is that a lot is really not understood about these mechanisms and they are working on theories, useful as far as they go but potentially flawed.

I agree Marie - we stenters are, I believe, the only group of people who have had stents inserted into the jugular veins. Dr. D. may have an idea as to why something is happening, but until further research he is not going to have answers to all the questions.

I was beginning to have spasms in my left leg prior to the procedure - obviously minor to what you and Alex have experienced. Those spasms are almost a memory now. The disappearance of my lower backache is my "why" question, with Dr. D's answer "I do not know - I have no idea"
" they are working on theories, useful as far as they go but potentially flawed." Dr. D is in agreement.

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SPMS

Postby iknewit » Wed Nov 25, 2009 3:07 pm

Marie~Thank you for your posts. I was diagnosed in 1988; currently I have SPMS. My last MRI, taken on March 3, 2007, indicated
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Postby mrhodes40 » Wed Nov 25, 2009 5:51 pm

Hi Iknewit Welcome

I was reading your name and saying "Ick -new-it" I wonder what that means :lol: I'm pretty dense!

You'll have to finish your story.......... :wink:
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 iknewit » Fri Nov 27, 2009 2:58 pm

My Internet crashed and it just returned. I was telling you what my last MRI stated. I believe I'm a candidate because the MRI stated " The iron deposition pattern is a bit unusual for patient's age; there is more iron than should be present in this age group, symmetrically located and it is in a nigral paatern probably associated with the muliple sclerosis." Clearly I have unusual iron in my brain, I just need a doctor that will agree do the sonogram and procedure. I live in Florida. I knew it, because I told my husband, after the MRI report in 2007, "There is something more to this iron and they are just shrugging it off." I just had a feeling but two doctors dismissed it and I gave up. Always trust your instincts.
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