CCSVI patients' log

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

Postby Loobie » Thu Jun 18, 2009 7:16 pm

As we speak I'm watching "The Song Remains the Same" in HD on Palladia so you know what I just had to do first,,,,,,
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Postby Ernst » Wed Jun 24, 2009 12:13 pm

So how many have been stent-operated? At least four, who are members in this forum? Or are there more in United States? and Italy?
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby mormiles » Wed Jun 24, 2009 2:46 pm

Has any stent insertion patient besides Jeff had an improvement in fatigue? How about imbalance?
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Wed Jun 24, 2009 2:58 pm

I have an improvement in fatigue. I can't say about my balance I have largely been in bedrest and any MSer knows that is a recipe for weakness...

In Dr Zamboni's liberation procedure where endovascular repairs are done, not stents, there were 4 americans.

4 of us TIMSers have been treated by Dr Dake with stents. Gibbledegook is there now and may have stents by now I do not know about that. THere should be more in a week, a couple are going the week of the 6th.

But these are tiny numbers so far.... early days to say how stents work for people with CCSVI other than the immediate results, in other words right in the operating room they tested mine to see how they were working and the collateral veins disappeared because all the blood was going through the regular vein which now has a stent in it so the collaterals just emptied and were invisible to the venogram. SO we know I am getting drainage, will that result in healing? Let's hope so...marie
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 Loobie » Thu Jun 25, 2009 4:55 am

My fingers are crossed.
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Postby Jamie » Thu Jun 25, 2009 10:34 am

I am so happy.
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Postby mormiles » Thu Jun 25, 2009 1:55 pm

Thanks Marie, Fatigue relief is the most enticing! Even taking Coumadin you have fatigue relief. Every time I "tune-in" here, I'm blown away. Hope is energizing and feels so darn good.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby cheerleader » Sat Jul 04, 2009 2:57 pm

Bumped for Alex and Mark...
Please add your info as shown on page 1, it really helps us keep track.
So far: Jeff, Marie, Holly, Sharon, Hub's wife
thanks,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Sun Jul 05, 2009 10:02 am

NEW:
Added to page 1, Alex's Patient's Log
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Postby mrhodes40 » Sun Jul 05, 2009 10:07 am

Cheer I'm glad you got Alex in here....good detail!
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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Re: Gibbledy's Log

Postby NHE » Sun Jul 05, 2009 11:38 pm

Cheerleader wrote:treatment: 3 Abbott Self-expanding stents were deployed. After placement collateral channels were not seen and no significant stenosis seen. Stent in right vein is 4cm by 1cm. Stent in left vein is 4cm by 1cm with additional 2cm by 1cm stent.


This is interesting information. Do you happen to know the typical diameter of the jugular vein?

Thanks, NHE
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Postby mrhodes40 » Mon Jul 06, 2009 8:47 am

It's gotta be close to 1 cm, a little under half an inch, because the goal is to restore anatomical patency and free flow, if it is smaller than it would be normally it will still be a bottle neck............

Veins are also a little distensible--they can stretch some--and they also are sometimes collapsed (closed essentially) You lost that capability with a stent in the location where it is placed. You'd want to place the size that would allow the vein to carry the max load.

I know on my venogram in the OR it looked like the stent was the same size... He also left some stenosis rather than place a second stent. he thought he had enough flow with the worst part of the stenosis opened up well.
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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Re: CCSVI patients' log

Postby NHE » Mon Jul 06, 2009 5:50 pm

OK. I guess the 1 cm is referring to the internal diameter of the stent. I found this paper which suggests that the internal diameter of the jugulars can be around 1.27 ± 0.16 cm and up to 1.44 ± 0.22 cm in the case that one of the jugulars is dominant over the other. I was just thinking about the mechanics of it all. For example, how much the stent might expand larger than the normal diameter of the jugular to insure that it stays in place? Still, these numbers may or many not be too meaningful for veins with severe stenosis. For example, with a vein that's closed down to just a mm or two, expanding it out to 10 mm might be sufficient in order to anchor the stent. I suppose that it's a question that someone that's spoken with Dr. Dake might be able to address.

NHE
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Postby mrhodes40 » Mon Jul 06, 2009 6:24 pm

Anchoring the stent is a technical issue, they did try two one one side and removed the first because he just was not happy with the fit. He had them checking the parameters on the box to see if it was the size he asked for then rechecked the way it fit, then decided it had to come out it was wrong and he changed stent type altogether to something else...then rechecked blood flow decided he was happy and we were a wrap finally.

I know he invented a stent that does not move. I honestly thought part of the reason they left some stenosis on one side on me was to have a narrowing a little downhill of my stent to keep it in there...but I do not know that for a fact; I invented that notion! Dr Dake is ALL business in the OR I did not get many questions answered.... He had better things to do than to answer my curiosity about every thing!! :lol: I was my usual yak a minute and he asked me to be quiet and relax! :lol:

talking patients is a hazard of twilight sedation. :oops:
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 skydog » Tue Jul 07, 2009 9:42 am

Patient: Mark diagnosis: PPMS 5/07 ( at age 50 ) lesions: scattered foci of the T2 hyperintense signal within the pariventicular and subcorttical white matter with involvement of the corpus callosum and colossal skeptical margin. Mild T2 shine through involving largest lesion within left perivvenrticular white matter measuring 7 mm Symptoms: left drop foot, pins and needle feeling in left foot, left leg weak, severe headaches, double vision, loud noises and ringing in ears, urgent bladder and bowel issues, stiff neck, left hand numbness and weakness, not able to perspire, heat intolerance, eyes twitched for days at a time, left side of face would tighten, left foot turned purple, head hot and feet and hands cold. Edss: at present 5.5 Treatments: candida cleanse, antibiotic ( lime disease protocol ), anti viral, Swank diet, chelation therapy 3 months, low dose naltraxone 3 months, reduced stress load from work, 85% raw food diet, eat home grown organic foods, Exercise daily. Diagnosis at Stanford 6/29/09: blockages of both jugular veins high up near the base of skull in upper sinus area, right side jugular had a major twist ( resembled a pigs tail ) left side sharper than normal bends. A more accurate description with correct terminology will be posted when received back from Stanford. Treatment: 6/30/09 two stents placed in the right jugular. At one week I am doing better than expected. Certain issues that I had not even thought about have disappeared, and some still remain the same. Most noticeably my hearing has improved. No longer hear the sounds in my head of a busy welding shop, just a steady ring that would be expected of the years of exposure to loud diesel engines fishing and operating heavy equipment. Fatigue less, and heat tolerance is better. I have not had a cramp or major muscle spasm all this last week. The 7 year dull headache has vanished, and aside from an occasional twinge of pain near the stent area I am pain free. The most surprising has been the clarity in my vision. No need for reading glasses and can see distant objects like in the good old days. Also my wife Brenda says my eyes have lost the glazed over look and are clear and bright. I am able to lift my left leg a little higher, but the drop foot remains the same. The left hand still gets numb and week but recovers quickly with a little rest. Still facing bladder control issues, but the urgency seems less. I broke into a good sweat the second night of our trip home, just the arms and chest area but sweating for the first times in 3 yrs. My forehead has been damp but only when I am just nearly overheated and starting to fatigue. The scaly dry legs are starting to get oily, hopefully the precursor to sweating there also. My apatite has been great, and bowel movement is still slightly spastic but improving. Mood is great and I am very optimistic about the future.
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