Terrible news.

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

Postby scorpion » Tue Jun 01, 2010 5:19 pm

I agree with Cheer. Good thoughts your way Lew.
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Postby Rose2 » Tue Jun 01, 2010 6:04 pm

Lew,
You have been a brave, shining light for me and I send good vibes thru the internet sky to you.
Sincerly, Rose ;)
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Postby Daisyduck » Tue Jun 01, 2010 8:35 pm

Bruce: In response to your post, I had surgery at Stanford one year ago in June and will be going back for my checkup end of June. A year ago Dr. Dake place four stents into my veins: Left jug, both subclavian, and the azygous.
I had nice improvement in bladder and bowel functions, heat resistance, ability to better ambulate, loss of discolouration of hands and feet, and I began to lift my left leg and foot rather than dragging it aacross a stoop or step. I also had had huge sinus type headaches, as well as a very painful stiff neck. Both symptoms never disappeared but became much much better after surgery at Stanford.
About February of this year I began having down days,I thought at first, but then I really began to think that I was no longer feeling the benefits of the procedure at Stanford, except for tyhe headaches, neckache and that I was still picking up my left foot and leg rather than dragging it.
Skin colour on hands and feet had turned bluish again (circulation impaired); my ambulation worsened. No more heat resistance!
My appointment is 6/24 at Stanford, and I will be talking to Dr. Dake about this unfortunate problem or these problems. I would be glad to relay to you what we discussed, to a degree, and as it relates to what he thinks in this regard. In fact, if any of you have questions for him, let me know, okay?
Lastly I put myself on a health food substance called Nattokinase, a soy product which is a natural blood thinner. No results so far as I just started two days ago. Take care and try not to dispair. Daisyduck
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Postby LR1234 » Wed Jun 02, 2010 3:39 am

Hey Daisyduck,
Sorry to hear things seem to be getting worse again.

I remember watching the UK MS/CCSVI meeting and a woman mentioned something about the blood flow evening out after a period of time. (something like that)

Do you think initally the increased blood flow really helps then the blood flow goes back to being slow flowing despite the stenosis/issues being fixed?

If that is the case once treated for CCSVI we need to find a med that keeps blood flowing (not just a thinner).

I posted this on Dr Sclafani's thread as a question but I don't think at this time such a drug exists??? or does it??? I know we have stuff like Ginkgo which is supposed to help blood flow. I also read about a drug called Serc which treats vertigo and might increase blood flow???

Any thoughts??
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Postby skincoll » Wed Jun 02, 2010 5:52 am

Have you guys heard of NITRIC OXIDE (not to be confused with nitrous oxide - which is pretty good fun anyway :wink:)? The body produces it naturally and it promotes vein dilation, but it can also be encouraged by the amino acid 'l arginine', actually the active ingredient in Viagra). There are many supplements containing this, for example this one which I've tried before http://www.selfhealth.co.uk/Products-fo ... itrox.html
I'm probably going to start taking this again after/if I have the procedure done next week in Poland. Peace and Love!
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Re: Terrible news.

Postby costumenastional » Wed Jun 02, 2010 6:14 am

eric593 wrote:Why on earth would your hopes be hung on the outcome of a single person???? Isn't that a bit ridiculous?


More than a bit.

Follow up dates for Dake's patients come closer and we ll see...
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Postby Daisyduck » Wed Jun 02, 2010 7:33 am

Thanks for your support and interest. As I woke up this morning, I remembered that after surgery last year I was able to walk to the bathroom without touching walls for balance and support. Not true any more.
I would not be as concerned about the experiences of one single person, but from reading this site it looks to me there are several of us who seem to be regressing. Blood flow could be the reason, I just do not know. This is all brand new science, and even Dr. Dake may not know some of the why's. There seem to be people who donate blood and feel better after, comments I read spoke about blood thickening around the stents, and the entire stent and ballooning idea comes from finding inadequate impaired blood flow in us, so it's a good guess?
I emailed Dr. Dake about my first outing poolside, that I felt I had lost my heat resistance, and he wrote back that maybe it was just a bad day. I truly believe that having a lot of information is a good thing, and I am still grateful for having been part of this innovative program, but if it's blood flow then there is some reason to think we can get a handle on it? I am making notes, comparing the results after surgery a year ago to changes I feel I am experiencing at this time. Maybe that would point to where the problems are? What do you think? Daisyduck
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Postby tzootsi » Wed Jun 02, 2010 7:35 am

skincoll wrote:Have you guys heard of NITRIC OXIDE (not to be confused with nitrous oxide - which is pretty good fun anyway :wink:)? The body produces it naturally and it promotes vein dilation, but it can also be encouraged by the amino acid 'l arginine', actually the active ingredient in Viagra). There are many supplements containing this, for example this one which I've tried before http://www.selfhealth.co.uk/Products-fo ... itrox.html
I'm probably going to start taking this again after/if I have the procedure done next week in Poland. Peace and Love!


Careful with nitric oxide, which is a powerful oxident. It has been implicated as an aggravating factor in MS, as it is bad for nerve regeneration. The direct-ms website has some papers on nitric oxide.
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Postby Loobie » Wed Jun 02, 2010 8:07 am

Hey I'm flattered as hell! Most of the time when folks are talking about me it isn't so flattering! lol. At any rate, keep in mind that I'm still walking WAY better than I was before the procedure. Way better. No cane and no limp until I walk a good distance. Don't forget I needed to be wheeled through the airport the first time out. All these comparisons are from my new baseline which is significantly higher than it was pre-procedure.

But the stuff I posted about is real. The new clonus, the dragging the throw rugs around and tripping over 1/4" high thresholds, plus leg weakness on the left side; mostly in the hamstring area. It's there for real but I have to qualify it a little better at least in terms of my interpretation of it.

Since I'm known as analogy boy, let's use the floods in Nashville as a reference. Let's say your house was underwater for days and days (active MS). If it stayed underwater it would be considered to be 'under attack'. But let's say the flood waters recede. Your house is still standing and the source of the active damage is gone. Is your drywall in good shape just because the water went back? Are the water stains and water saturation and actual damage going to go away? No, it's now waterlogged even though there is no more active damage. And it's deteriorated and will not fix itself just because you took the damage away. And it never will. IT NEEDS REPAIRED. That's my CNS. I don't have inflammatory MS (RR). I have SP, so there's damage that doesn't go away when the inflammation is removed.

So I'm now aging with weak drywall. It's going to deteriorate naturally much faster than good drywall would have. So I suspect there's some of that going on. To be cliche, it is what it is. My nerves that are damaged are aging more quickly than healthy nerves age. So as many of us suspected, if you have an actual damaged CNS, and not a CNS affected by inflammation, you're going to need Step 2; repair. Is it stem cells? Is it something else? No one can say yet as this is, as Joan has pointed out, new stuff; we were guineas of the highest order.

My spirits are good. I'm pissed that I didn't get the results of people like Rhonda and Mel, but I don't begrudge them one bit. The flood waters were at their doors, but still behind the sandbags. So when the waters receded, the symptoms did too. THAT IS AWESOME NEWS. Why? Because maybe if CCSVI gets researched to death, it may become the first thing you do upon diagnosis. Then maybe nobody has to progress to progressive and deal with the damage that has already happened to me and all of us SP'rs and PP'rs.

I am absolutely grateful to have been a part of this. I am now in the camp of "I've done everything physically possible to beat this disease", it's just that everything possible still isn't a cure and a fix.

BTW, I was on Tysabri and progressed the WHOLE TIME, so there will be no talk of me going back on that crap. It didn't work; period. Hell, they even tell you it won't work when you're progressive so this line from LeAnne:

"Lew stopped Tysabri medication after he had the CCSVI operation and my feeling is that maybe we need to stay on the meds until we know the true impact of CCSVI. It may be a case of CCSVI and meds together to beat this disease."

isn't really anything I'd even remotely consider because why pump myself full of high priced poison (my opinion) if it isn't working? What's the definition of insanity? Doing the same thing over and over and expecting different results. It simply didn't work and I'm not going to stay on drugs that aren't working. It doesn't even make a modicum of sense. If there was even an inkling that it worked, I'd never have stopped it. Read the Tysabri book. The big marker for using Tysabri is to keep you from going progressive or getting past EDSS 3.5. I was a 4.5, so I shouldn't even have been on it in the first place. Maybe it helps RR patients, but it didn't do anything for me except drain my wallet.

The visit to Dake is going to be telling. If he says my jugs still look like McDonald's straws, it won't be what I want to hear, but it will reinforce my theory about aging with damaged nerves. You have to remember, my most recent active symptom when I was sliding was all things left leg, so it's not surprising in the confines of my theory that it would be the first thing affected. However, let's hope he finds some new area of stenosis, or has better insight into the azygous. We DID check my azygous very robustly last time and it was flowing well. Maybe it's the membrane thing that Simka sees. I don't know and neither does anybody else really. If there's flow, it's working right is all I can say. I suspect my theory is right.

And remember one thing. MS sucks and it makes your life hard. BUT it is still simply that; life. This is my life. Michael Phelps' life is his life. No one said all our lives are the same or be at the same level of suckiness. I have this to deal with. Life is harder, but I'm still alive and still searching for what makes me happy and content just like everybody else, healthy or not. How can I "woe is me" this? We didn't know if it would be successful or not. So we were just hoping it would work. That's it, that's really it. If I start deteriorating more rapidly again, guess what? I start all this madness over and move on to the next thing if there is one while I'm still around and kickin'. That is doing all I can and we all need to. The more you learn, the more you realize that you shouldn't do anything you dr. says unless you agree with it also. That's what comes with having a disease with such poorly understood etiology. They don't know shit about this disease, only what they are supposed to prescribe you. Call than an opinion or a fact, but it's obvious no one knows enough about this disease to be super confident recommending ANYTHING.
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Postby LR1234 » Wed Jun 02, 2010 8:25 am

@ Lew, I don't blame you about not wanting to go back on Tysabri. I have never tried any of the DMD's as I also think they could do more harm than good. (I take LDN)

I have heard though about this Tysabri rebound thing when you stop taking it and was just wondering if this could be a factor in whats happening with you at the moment??

If that is the case maybe it will settle down again soon.

I hope Dr Dake can provide some anwsers, x


@ Daisyduck I am hoping that the vascular surgeons/dr's me can put forward some ideas/meds that might increase blood flow through the veins.

Do migraine drugs work on blood flow?



x
Last edited by LR1234 on Wed Jun 02, 2010 9:03 am, edited 3 times in total.
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Postby Cece » Wed Jun 02, 2010 8:53 am

Loving the house/floodwaters analogy....

I think a salient detail here is that even with a recent slide you're still better than you were before the procedure. That would NOT be expected as a SP except with this intervention.

I think the SPs are the ones who really prove the theory...RRs like me are so up-and-down, it's hard to claim with certainty that it's the procedure and not the day of the week or the way the wind is blowing that's responsible for improvements...PPs are not seeing as much improvements although I hope that will change...SPs are where it's very hard to argue that these results would've been the course of the disease anyway!!

Take care Loobie and wishing you the best.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby prairiegirl » Wed Jun 02, 2010 8:55 am

@Lew, Your post is so well reasoned, honest and moving. I just want to express sincere gratitude to you front-line "guineas of the highest order" :D. I hope that your visit with Dr. Dake provides some answers-- hoping for the best for you!
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Postby skincoll » Wed Jun 02, 2010 10:57 am

tzootsi wrote:
skincoll wrote:Have you guys heard of NITRIC OXIDE (not to be confused with nitrous oxide - which is pretty good fun anyway :wink:)? The body produces it naturally and it promotes vein dilation, but it can also be encouraged by the amino acid 'l arginine', actually the active ingredient in Viagra). There are many supplements containing this, for example this one which I've tried before http://www.selfhealth.co.uk/Products-fo ... itrox.html
I'm probably going to start taking this again after/if I have the procedure done next week in Poland. Peace and Love!


Careful with nitric oxide, which is a powerful oxident. It has been implicated as an aggravating factor in MS, as it is bad for nerve regeneration. The direct-ms website has some papers on nitric oxide.


Thanks for that info. I was unaware of its inflammatory role in MS, just it's dole as a vein dilator. So, anyone reading this, please don't take my advice! I probably won't be taking this now after reading the paper on direct-ms.
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Postby Lyon » Wed Jun 02, 2010 12:55 pm

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Last edited by Lyon on Sun Nov 20, 2011 8:33 pm, edited 1 time in total.
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Postby MaggieMae » Wed Jul 21, 2010 6:44 pm

So how are you Lew? Nothing on your web site or here in the last few weeks.
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