Are we really any better, and other sacrileges

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

Are we really any better, and other sacrileges

Postby 1eye » Thu Oct 14, 2010 9:44 am

October 13, 2010.

They brought the 33 Chilean miners out from the cave-in today.

While they were doing that, I was selfishly thinking of myself. What I was trying to figure out (while they rescued the rescue worker) was, has it all been worth it? It was likely to be dire, since I spent the day coping with a bad stomach, which I blame squarely on Canadian Thanksgiving. I will spare you the details; it wasn't fun.

I should be in bed, but I spent a lot of today in bed already. So, a self-assessment:

My right ear rings. My left is quieter. That I would call a slight improvement.

I talk more clearly. Cognition is not much of an issue. Another improvement.

Paralysis: left arm and foot. No real improvements. I will soon get an exercise machine that may be of help. I was visiting one once a week at a Community centre, now might be able to do it every day.

Head still hurts. Legs still restless (I mean restless -- even if everything else wants to sleep, nope, legs still want to thrash.) Still can't walk past the Seniors' Centre on account of fatigue, non-dorsiflexion of left foot, atrophy of trunk muscles.

A positive benefit has been that I use the walker at all. I was resigned to the wheelchair.

Unsure, I asked Suzanne. She gave me an unequivocal yes. I guess all the little things add up, and she says they were definitely worth it. I am just so frustrated that it is so gradual. But hey, I'm only 56.

I think they have given up on Mrs. C. She has restenosis, clots, and a lot of pain. Drs. won't touch her, because of the blood thinner death. Too public, too risky. Is there no more stuff that can be done? Not on Dr. Zamboni's road. Once when she explained her plight to him (pre-clots), he said something like: it is for you that I do this.

I am off a few medications that I hated anyway. Effexor will effectively prevent any sexual gratification you might attempt. It will also arrange things so that you don't give a damn, too. For some people this might be a good thing. So off that stuff; only 75 mg anyway. Baclofen does what it's advertised to: eliminates spasticity. But in the process, for me at least but I suspect others too: it made the waterworks overflow. So out with the baclofen, for me at least.

Also, I make stupid noises on the piano. This is an adaptation due to complete loss of considerable ability to play the guitar. But I am realistic. Suzanne asked me who I was listening to. God. God? Well, that's what Fats (Thomas) Waller used to call him. Art Tatum. Like I said, I'm realistic.

So I guess the word is that something did something. Will it last? Don't ask a person with stomach troubles. Gives you a very bleak outlook on the future. Those miners were probably better off. Families wanted to visit? Perfect. Put them in the tubes and send them down to visit... you know the drill, if you've ever had a bad stomach.

One of the miners said they were down there with God and the Devil, but God won. Of course, being an atheist means one has to have a different kind of translator standing by. God did not do this. He was too busy with the line-up of souls in places like Afghanistan. The Chilean people, with help from all over, did this. While people often get the blame, for miraculous things they don't often get the credit. This time, I think they deserve it.

And all of you Americans: beware of turkeys...
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Postby sbr487 » Thu Oct 14, 2010 9:51 am

:)
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby magoo » Thu Oct 14, 2010 10:57 am

:D :D :D
Congrats on the improvements.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby David1949 » Thu Oct 14, 2010 1:04 pm

Well considering that you're suffering a stomach ache and that you've stopped taking the happy pills, it might not be the best time to assess your MS condition. Also if you take the CRAB drugs you probably know that some of them can cause depression. Add all that up and it's no wonder you aren't feeling all that great. This is just a suggestion but you might want to wait until you've at least recovered from the stomach ailments before you decide how you're feeling. I hope things will look much better then.

PS I'll take your advice on the turkey. :lol:
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Postby 1eye » Thu Oct 14, 2010 1:49 pm

About happy pills: still on a very high dose of a different one. Not to worry. I am aware of depression: one of the most common 'MS' symptoms. The effexor wasn't helping. My worst problem now isn't depression: it's very illogical, namely pseudo-bulbar affect making me burst into tears with no justification. I take DM syrup which helps some.
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Postby Cece » Thu Oct 14, 2010 1:49 pm

1eye, I am encouraged by what you wrote, those are at least improvements. Hang in there! Who knew Thanksgiving posed such a threat.

Is it too much to hope that in one year's time, the Canadian government will have caved and be offering this treatment locally? By then anyone who has had the treatment now and hopefully had improvements or avoided some progression will then be able to get further treatment and maybe further benefits.
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Postby Jugular » Thu Oct 14, 2010 5:47 pm

Al Pacino's character had something to say in the movie Any Given Sunday that you might find apropos
Al Pacino wrote:You know when you get old in life
things get taken from you.
That's, that's part of life.
But,
you only learn that when you start losing stuff.
You find out that life is just a game of inches.
So is football.
Because in either game
life or football
the margin for error is so small.
I mean
one half step too late or to early
you don't quite make it.
One half second too slow or too fast
and you don't quite catch it.
The inches we need are everywhere around us.
They are in ever break of the game
every minute, every second.

On this team, we fight for that inch
On this team, we tear ourselves, and everyone around us
to pieces for that inch.
We CLAW with our finger nails for that inch.
Cause we know
when we add up all those inches
that's going to make the f%$@*&$ difference
between WINNING and LOSING
between LIVING and DYING.

The reality is that no matter how good of a treatment this may be, it may be too late for us. We is damaged goods. We're probably going to have to wait for myelination treatments for significant improvements. Take comfort in the fact that you were a Pioneer in a new treatment that might spare countless others the suffering we endured.

In the meantime, keep 'clawing' away at it. Without being soaked in used blood, potentially new neuropathways and workaround solutions might be there for your body’s nervous system to discover.

Inch by painful inch.
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Postby 1eye » Thu Oct 14, 2010 7:18 pm

Cece wrote:the Canadian government will have caved


I was once called Eeyore by a person in my office. I'm not always pessimistic, but given the happenings of this year I don't think this next one will be *that* good. But I know Dr. Duncan is still on the case because she never stops. And with any luck we'll get rid of these pork-chops in power. I've been alive a long time, and I have never seen anything this lamentable.

What a travesty.

The stuff about stomach flu was all written yesterday. I feel some better; thanks for the kind words. Thank you too Jugular. Now I have another movie to watch... Hey if there is a stone I will not leave it unturned. Same for you. And while you are at it if you hear of a surefire way to clear a clot, lemme know.

Keep your mouth closed in the rain. I learned that from turkeys.
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Postby Cece » Thu Oct 14, 2010 7:25 pm

My timetable of a year may be way off, but I think the Canadian government will cave and CCSVI will be proven through research results. Just not sure in which order those two will happen! Or when.

1eye, a clot? :(
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Postby 1eye » Thu Oct 14, 2010 9:49 pm

No not me but close. Ms. C. was there at the gym one day about a year ago, and she mentioned Zamboni etc. I thought I was hip because I had read about it. We got excited about it almost in parallel. She started a group and we had meetings that seemed to get bigger each time, painted signs, went on the National, went to Parliament.

Along the way I realized some people were going to have to be first in line. Ms. Farrel is one. But I likened Ms. C., and Mr. K., the man who also did a lot of organizing (who also has CCSVI pretty bad), to parents in an emergency, on a plane when their oxygen masks drop. They have to get theirs on first. Then they can help the kids.

Those meetings aren't happening as often, and are more sparse. Mr. K, the fellow I mentioned before, went on his own, in a wheelchair, to India. He has young kids too, but had to leave them home. Everybody has to start somewhere, and they probably had not yet been to the course. So they tested him, said he did not have CCSVI, and sent him home. He was not happy. He still has not been treated as far as I know.

Ms. C. had been to Dr. Haacke, and got very good MRVs. She went to Albany for angioplasty. She didn't have much result, so she went back, and got stents. She then got clots and now both jugulars are blocked. There is no where else she can go, though she is on blood thinners and being 'followed' by a hematologist, I believe in Montreal. Though I was at first jealous, though happy for her, now I feel guilt and a sense of urgency and frustration that there does not seem to be anything more that can be done. Maybe the blood thinners will work. She's in pain.

I often wonder if my long shaves (slow hands) with an electric razor are helping or hindering with re-stenosis. If I knew, I could recommend shaving! For men, anyway. The only advice I have, without any knowledge of whether it's good advice or not, is exercise. Try to keep the blood flowing.

I just saw a show about a strange disease that drives people mad by keeping them awake. Knowing what we know about jugulars maybe the only option is to learn to sleep standing up. Not enviable.

No, no clots for me yet. I was thinking of Ms. C.
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'MS' is over - if you want it
Patients sans/without patience
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Postby hope410 » Fri Oct 15, 2010 2:59 am

Who is Ms. C? Is her tale of worsening/doing poorly on TIMS somewhere that I can read? I'm sorry to hear of the serious troubles.

I think your reflections really emphasize the need for realistic expectations. We have to be accepting if we don't see improvement and not be psychologically affected. More will be known in as little as the next year, and we'll be in a whole different ballgame then. That needs to be okay with us if that is what happens. We're still so much further ahead with that scenario than we were a year ago.

It's tough, but going in without any preconceived expectations is really vital to our mental health, I think.
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Postby Cece » Fri Oct 15, 2010 6:10 am

Can Mrs. C afford to travel again? If Dr. Siskin can't help her, another IR might be willing to try. It was said elsewhere on the forum that clots become permanent after three months, I have no idea if this is accurate or not, but it adds to the urgency if it is. It has also been said that restenosis is best caught when the vein is narrowed and not closed completely. I am worried for your friend too, I would think she needs an IR to make these decisions, not a hematologist.
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Postby David1949 » Fri Oct 15, 2010 11:49 am

It seems like some folks have adverse reactions to ballooning and or stents. It makes me wonder if there isn't some sort of test that be done to screen out those people who are likely to have problems.

Also I understand that one of the doctors who is doing the Liberation treatment will only do one vein at a time. My initial reaction to that is that its a huge waste of time and money for the patient. On the other hand if the patient happens to be one of those who has an adverse reaction then it's certainly better to have just one screwed up vein than 3.
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Postby Cece » Fri Oct 15, 2010 2:59 pm

There are two doctors doing this one vein at a time: Dr. Mehta in Albany and I forget the other.... I'm not sure if two weeks is long enough to see if this sort of problem is going to occur. But it could be a way to separate your normal cases from your problem cases. For people traveling in, Dr. Mehta will do the jugs one the first day, the other the next, so not much time in there for problems to show.
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