CCSVI patients' log

LR1234 · Post by **LR1234** » Thu Sep 03, 2009 10:10 am

I can also say for sure that when I strengthen my stomach muscles by doing sit-ups my symptoms improve. (I need to get back to doing that).
It straightens my back and corrects my posture.

zap · Post by **zap** » Thu Sep 03, 2009 10:40 am

Now that's really interesting, and supports my (baseless?) intuitions.

Wanna start a new thread about posture and symptoms, see if others find the same thing?

LR1234 · Post by **LR1234** » Thu Sep 03, 2009 10:46 am

If you like Zap:) Feel free to start a new thread. I am going to make a real effort this week to work on my stomach and to improve my posture. If a few of us fancy testing the theory even better.
50 sit-ups daily using my rollator thing (not sure what it is called) (20 for the side stomach muscles and 30 for the centre stomach muscles)

Sharon · Post by **Sharon** » Thu Sep 03, 2009 1:27 pm

Hi Mark!

Sorry to hear your follow-up was not what you expected. You said you are in a wait and see mode...will you be returning to Stanford for another follow-up?

This is all so new and we stenters have had different issues to deal with. Maybe we will find out more next week and, obviously Dake is learning with each of us.

Take Care,
Sharon

mrhodes40 · Post by **mrhodes40** » Thu Sep 03, 2009 2:16 pm

Mark I am glad the original stent looks good. Yeah for no coumadin!! I don't blame you for waiting a bit to see what is what with regards to the next phase. It sounds like at the minimum you are better off than you were the first trip? At least some partial blood flow improvement?

Blessings to you
marie

CureOrBust · Post by **CureOrBust** » Thu Sep 03, 2009 4:38 pm

MaggieMae wrote:Why would this happen - new stenosis - and so soon after your initial surgery?

I don't know what I am talking about here, but, the vascular system is a "system". I personally have been thinking that some of the "stenosis" that have been seen, may not be a localised physical restriction or "defect" in themselves, but the effects of low flow through the vein due to an abnormality somewhere else. I am thinking that the collapsible veins are like fire-hoses, that are only "open" when there is internal flow/pressure. The fire-hose may be perfectly good, but if there is no flow, it will lay flat on the ground. If there is some other abnormality in the system, the flow through it will be "incorrect/abnormal". I am also thinking of the flow diagrams Zamboni presented in his paper. But I repeat, I don't really have any medical basis for these thoughts.

Mark, if I may ask, how do you respond to steroids?

CureIous · Post by **CureIous** » Thu Sep 03, 2009 6:17 pm

skydog · Post by **skydog** » Thu Sep 03, 2009 7:09 pm

Ah no place like home… we are back and all is well after a great trip visiting friends and taking in the sites along the way. I filled the camera with some awesome shots of the SF bay area from vantages that only few get to see. Thank you all for the well wishes. Lots of great out of the box thinking. I like the fire hose analogy. It does kinda fit with my low BP and is something Dr. Dake and I discussed. You know it is what it is so we just get on with it and hope for the best. Dr. Dake was very reassuring that we will find out what this means. I guess that is the good part of being the odd duck in all this. Please for me keep the faith. I am the exception not the rule so do not let my little stumble stop anyone from pursuing testing and treatment for CCSVI. My hope is that this will pan out as another piece to the puzzle. Peace and Health, Mark

whyRwehere · Post by **whyRwehere** » Thu Sep 03, 2009 11:28 pm

Like your attitude Skydog, and what Cureorbust said is a good idea. Have you, Mark, always had low blood pressure?

LR1234 · Post by **LR1234** » Fri Sep 04, 2009 1:25 am

It is things like this that lead dr's to the answers Mark, hopefully it means that Dr Dake will start checking your whole vascular system to see if something somewhere else is leading to the increased pressure in the jugulars. There is a reason this has happened and I really hope Dr D along with Dr Z are the guys to work back to lead them to the cause.
I hope also that Dr D and Dr Z and Dr Simka discuss your case together.

skydog · Post by **skydog** » Fri Sep 04, 2009 5:41 pm

Cheer: Yes on staying positive! I am going back to the garden and my healthy life style. I guess I threw a curveball for the upcoming conference hope it sparks some lively discussion. LR1234: I did not get a recheck on the venous pressure. We are leaving the stenosis as is for now. Who knows with some good old positive thinking it might disappear as quick as it appeared. The sweet taste of relief keeps me thinking positive for the future. Zap: Going back on the rack/inversion table. Good posture and breathing does help. I have kept my a toned tummy since a skiing injury when 18 yrs old left me with a choice surgery or strong muscle tone. I opted for the toned muscles and do sit ups daily. Sharon: I will go back when ever Dr. Dake wants to see me. Hanging loose for now… mrhodes: Yes a little better. Some pluses some minuses but will keep on keeping on. WhyRwehere: BP 100/60 plus or minus a little is the norm for me. Peace, Mark

skydog · Post by **skydog** » Fri Sep 04, 2009 6:22 pm

Cure, Never done the steroids, but I have taken vitamin d daily for a while and plan on returning to a daily dose when the sun starts to settle lower on the horizon. Cheers, Mark

catfreak · Post by **catfreak** » Fri Sep 04, 2009 7:43 pm

Mark,

I am just now getting to read all the other post while I rest in the hotel tonight. I too am very sorry to hear about the new stenosis. Since my procedure is so new the only change I have so far is no more ringing in my left ear. I also had a constant ringing or buzzing, it is gone for now.

Wait and see is best since I imagine there will be many lively discussions about your restenosis. Hang in there and I am keeping the faith!

Cat

Terry · Post by **Terry** » Sun Sep 06, 2009 5:51 am

Cure wrote

MaggieMae wrote:
Why would this happen - new stenosis - and so soon after your initial surgery?
I don't know what I am talking about here, but, the vascular system is a "system". I personally have been thinking that some of the "stenosis" that have been seen, may not be a localised physical restriction or "defect" in themselves, but the effects of low flow through the vein due to an abnormality somewhere else. I am thinking that the collapsible veins are like fire-hoses, that are only "open" when there is internal flow/pressure. The fire-hose may be perfectly good, but if there is no flow, it will lay flat on the ground. If there is some other abnormality in the system, the flow through it will be "incorrect/abnormal". I am also thinking of the flow diagrams Zamboni presented in his paper. But I repeat, I don't really have any medical basis for these thoughts

I am wondering if maybe the collaterals come before the stenosis. Maybe from upregulation of VEGF?
Ischemia causes upregulation of VEGF, so from that, you would think that the stenosis comes first. But, also causing it is too little zinc and also EBV. I'm sure there is more.
What if the collaterals form first, taking enough blood flow from the jugs as to cause them to flatten?
Just a thought. Feel free to shoot it down.
Terry

zap · Post by **zap** » Sun Sep 06, 2009 8:37 am

Funny, I woke up this morning with the same notion.