procedure improvements

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

procedure improvements

Postby numbness23 » Mon Apr 16, 2012 11:29 am

All,
battling ms 4 years. Not walking. Horrible spasticity and horrendous heat intoleance. Lots of finger and feet numbness. Has anyone that has had the procedure found lasting improvemnts in these areas? Please those of you with 0 and 1 etc on the edss need not reply...i want to hear from some people who have it more extreme. thanks
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Re: procedure improvements

Postby 1eye » Mon Apr 16, 2012 7:30 pm

My EDSS was 6.5-7.0. It is probably now back to that. But I have had improvements. I can't play guitar, but I'm making progress on piano. Not in wheelchair much anymore but walker is still too slow for prime time. Hardly any falls these days. Can do about 4 hours easy work if I take pain-killers. Good luck and better health.
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Re: procedure improvements

Postby numbness23 » Tue Apr 17, 2012 6:13 am

thanks one eye. glad for you. discouraged that the post isnt flashing with multiple improvement reports..
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Re: procedure improvements

Postby CureIous » Tue Apr 17, 2012 11:27 am

You basically asked people with higher EDSS scores only to answer 2 questions, one of which doesnt relate to EDSS, and those who could answer specifically to the issue of heat intolerance, to not answer unless they had a high enough score, regardless of their improvements, even though the score and heat intolerance are two completely separate things.

IOW, would like to answer your questions, and I'm sure many others also, but the criteria is inflexible and inconsistent.
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Re: procedure improvements

Postby numbness23 » Tue Apr 17, 2012 11:56 am

CureIous wrote:You basically asked people with higher EDSS scores only to answer 2 questions, one of which doesnt relate to EDSS, and those who could answer specifically to the issue of heat intolerance, to not answer unless they had a high enough score, regardless of their improvements, even though the score and heat intolerance are two completely separate things.

IOW, would like to answer your questions, and I'm sure many others also, but the criteria is inflexible and inconsistent.



walking, heat intolerance, spasticity, and numbness...thats four...the idea is im hearing very little from anyone in the progressive boat about lasting improvements, or any at all for that matter. Believe me I am all for the theory. Already done it once and keep progressing. Trying to formulate my next move. Lots of wonderful things from those with less disability, very little im hearing from those that are f'd up like me. Please feel free to share if you cant walk, cant feel most your body, having trouble seeing, cant be in the heat, debilitating spasm and pain, and the procedure is making you feel better. As i quickly run out of options and nothing seems to work, I am weighing out another treatment, but the ten thousand clams is holding me back since i am low income, but if I could get better life quality I am game...Perhaps I didnt explain it properly...
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Re: procedure improvements

Postby AnCap » Tue Apr 17, 2012 2:25 pm

numbness23 wrote:
CureIous wrote:You basically asked people with higher EDSS scores only to answer 2 questions, one of which doesnt relate to EDSS, and those who could answer specifically to the issue of heat intolerance, to not answer unless they had a high enough score, regardless of their improvements, even though the score and heat intolerance are two completely separate things.

IOW, would like to answer your questions, and I'm sure many others also, but the criteria is inflexible and inconsistent.



walking, heat intolerance, spasticity, and numbness...thats four...the idea is im hearing very little from anyone in the progressive boat about lasting improvements, or any at all for that matter. Believe me I am all for the theory. Already done it once and keep progressing. Trying to formulate my next move. Lots of wonderful things from those with less disability, very little im hearing from those that are f'd up like me. Please feel free to share if you cant walk, cant feel most your body, having trouble seeing, cant be in the heat, debilitating spasm and pain, and the procedure is making you feel better. As i quickly run out of options and nothing seems to work, I am weighing out another treatment, but the ten thousand clams is holding me back since i am low income, but if I could get better life quality I am game...Perhaps I didnt explain it properly...


My condition is very similar to yours except I've had it for 3 years and not 4 and I'm still walking reasonably alright. I'm getting there though and pretty quick. My full story is here:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19553.html

Have you had your spine checked yet, especially the upper cervical spine? I think that CSF flow problems, on the whole, may contribute more to MS progression than venous flow problems. For example, cheerleaders's husband Jeff benefited tremendously from having his IJV ballooned. More than likely, that was the bulk of his MS contributing factors. For people like you and me, we probably have some CSF flow problems, plus CCSVI, plus bruxism (Dr. William's research will eventually expose a major factor in most cases of MS I think), plus other stuff that is leading to just constant progression.

Do you have a history of any head or neck trauma?
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Re: procedure improvements

Postby Cece » Tue Apr 17, 2012 2:51 pm

you might find some reports from people with higher disability in the improvement reports thread
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic16157-240.html
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Re: procedure improvements

Postby numbness23 » Wed Apr 18, 2012 10:19 am

AnCap wrote:
numbness23 wrote:
CureIous wrote:You basically asked people with higher EDSS scores only to answer 2 questions, one of which doesnt relate to EDSS, and those who could answer specifically to the issue of heat intolerance, to not answer unless they had a high enough score, regardless of their improvements, even though the score and heat intolerance are two completely separate things.

IOW, would like to answer your questions, and I'm sure many others also, but the criteria is inflexible and inconsistent.



walking, heat intolerance, spasticity, and numbness...thats four...the idea is im hearing very little from anyone in the progressive boat about lasting improvements, or any at all for that matter. Believe me I am all for the theory. Already done it once and keep progressing. Trying to formulate my next move. Lots of wonderful things from those with less disability, very little im hearing from those that are f'd up like me. Please feel free to share if you cant walk, cant feel most your body, having trouble seeing, cant be in the heat, debilitating spasm and pain, and the procedure is making you feel better. As i quickly run out of options and nothing seems to work, I am weighing out another treatment, but the ten thousand clams is holding me back since i am low income, but if I could get better life quality I am game...Perhaps I didnt explain it properly...


My condition is very similar to yours except I've had it for 3 years and not 4 and I'm still walking reasonably alright. I'm getting there though and pretty quick. My full story is here:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19553.html

Have you had your spine checked yet, especially the upper cervical spine? I think that CSF flow problems, on the whole, may contribute more to MS progression than venous flow problems. For example, cheerleaders's husband Jeff benefited tremendously from having his IJV ballooned. More than likely, that was the bulk of his MS contributing factors. For people like you and me, we probably have some CSF flow problems, plus CCSVI, plus bruxism (Dr. William's research will eventually expose a major factor in most cases of MS I think), plus other stuff that is leading to just constant progression.

Do you have a history of any head or neck trauma?



THE only major trauma is this damn MS. No injuries to speak of. I swear I am progressing so fast. Fatigue is so bad i can barely keep my eys open and all day....
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Re: procedure improvements

Postby DougL » Wed Apr 18, 2012 10:57 am

numbness23 wrote:THE only major trauma is this damn MS. No injuries to speak of.
are you 100% sure. my partner said the same thing. then one day a few weeks ago, she told me she fell down a flight of stairs at age 3.

that sounds like it could be major to me even though she said she was okay when it happened. did she hurt herself and not know about it?
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Re: procedure improvements

Postby AnCap » Wed Apr 18, 2012 1:20 pm

numbness23 wrote:THE only major trauma is this damn MS. No injuries to speak of. I swear I am progressing so fast. Fatigue is so bad i can barely keep my eys open and all day....


It's hard to imagine that ONLY congenital factors are at play in your case. Have you asked your parents about any falls from a crib or when you were too young? Rough birth maybe? Does your MRI show any skeletal abnormalities? Do you have a normal neck curvature?

Also, do you grind or clench your teeth? It's hard to know if you do at night without someone observing, but what about during the day?

Also, where are your lesions?
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Re: procedure improvements

Postby Tracker » Wed Apr 18, 2012 4:43 pm

I and 2 other pwms that I know started taking Low Dose Naltrexone (LDN) and 4-aminopyridine (4-AP), and it has been a life-changing for all of us.
Both these drugs are cheap and VERY effective.
The LDN takes away Heat Intolerance, Gross Fatigue, Incontinence and more.
The 4-AP helps leg strength.
Another drug, Baclofen, helps greatly with spasticity
You should be able to get prescriptions for Baclofen, 4-AP & LDN from your general practioner (no neuro needed)
4-AP & LDN are non-toxic, have been taken by pwms for decades, and WORK. A compounding chemist has to formulate them into capsules. The dose rate for both of these drugs is an individual thing.
You should not take more than 3mg LDN if you suffer from spasticity, otherwise it may worsen.
4-AP can have side effects, in that you can feel unwell if you have the incorrect doseage for you.
I take little & often ie 5mg every 4 hours, & that is perfect for me. 10mg makes me unwell, but a fellow ms'er takes 10mg & is fine..
I take 25mg Baclofen every 4 hours.
My heat intolerance, gross fatigue, spasticity, stiffness & general well-being are managed with Baclofen, 4-AP & LDN. I wouldn't be without them.
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Re: procedure improvements

Postby Thekla » Thu Apr 19, 2012 1:15 pm

I have taken both LDN and 4AP. After my 2nd procedure with Dr Sclafani (July 2011), I went off both for several months and functioned just as well without. I stopped LDN because I started to have more side effects especially spasticity and bladder issues. I just restarted at a much lower dose of 2.5mg with no problems. I don't seem to be incredibly heat intolerant although I can't sleep with a thick comforter and expect to move in the morning! I also take magnesium for spasticity. It has been a huge help. I just ordered some magnesium oil so I can take it orally and also absorb it through the skin. I don't like baclofen---heard too many people have problems with it or because of it. I also seem to do better with vitamin D3 supplementation. If I drop down, the spasticity gets worse. I would have liked more improvement with my legs but didn't get it. My feet have gradually been getting warmer though. I started following Dr Terry Wahls who got out of a w/c with intensive nutrition and ems therapy. I have gained further improvements from this. Who knows how much is possible? I have increased core strength and slightly stronger legs now. I am also looking into being evaluated for Atlas Balance/Dr Amir since I have had repeated whiplash/soft tissue damage right before diagnosis.
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Re: procedure improvements

Postby 1eye » Thu Apr 19, 2012 2:59 pm

1eye wrote:My EDSS was 6.5-7.0. It is probably now back to that. But I have had improvements. I can't play guitar, but I'm making progress on piano. Not in wheelchair much anymore but walker is still too slow for prime time. Hardly any falls these days. Can do about 4 hours easy work if I take pain-killers. Good luck and better health.


I have, sad to say, had more falls since my post on this thread on Monday, than I have had since I came home from Albany in 2010.

I am at the end of my walking improvements and ready to get back in my wheelchair. I think there is plenty of evidence that a) it can improve many things, including walking, for years, maybe indefinitely, and b) it is often temporary. I am not saying anything about placebo effect. These are real improvements, and they can last indefinitely, but often (and I don't know how often) are lost again. At least one doctor says it's not a matter of if, but when. Is it 'loss of improvements' or is it a relapse? If it's a relapse, then the diagnosis by at least two 'MS' neurologists, of 'SPMS', makes no sense. I have heard of 'RP' (relapsing progressive) but it all sounds like pin-head angels to me. That goes for any treatment, too.

So, I still say, discuss it with your doctor, and go for it if you want to. There's a slim chance you get worse,. You might not benefit, it might not last, or you might and it might. The best outcome, for me, was too good to pass up a chance on, and after one heart attack I was not afraid of a catheter. So I got some radiation, ok. That's another good reason to use IVUS. Also, I went to a Parliamentary subcommittee meeting, which a guy who had gone to Poland was also at. He spoke there, I think. He had been in a long-term nursing place, but now had his own apartment. He was now walking. I saw him do that, uphill, too, across a busy street. Of course I'd never seen him before, so he could have been lying, but I doubt it somehow.

It's still early in the life of this treatment. A very difficult decision for some, natural to others.
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'MS' is over - if you want it
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Re: procedure improvements

Postby Cece » Fri Apr 20, 2012 7:20 am

I do not think it has to be temporary. 1eye, I have been concerned since you restenosed as seen on doppler and not that many months after your procedure. Underdiagnosed, undertreated? Falls and wheelchairs. I would rather procedure #2 be imminent than a wheelchair be imminent. The procedure does not work for everyone, but those who had improvements and then lost them after restenosis are in a good position to try again. :(

Dang politics and money and common everyday angioplasty mislabelled as investigatory. Ten thousand clams.

Numbness, if you aren't hearing from people who had the procedure and had improvements despite a high EDSS, do you want to open this up to anyone with a high EDSS whether they had improvements or not? I don't think we can conclude that people with a high EDSS do not have improvements. I think we can conclude that there are not many people with a high EDSS who have had the procedure who are posting on TiMS these days.
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