Co-workers wife had the tests with Dake yesterday......

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

Co-workers wife had the tests with Dake yesterday......

Postby Jamie » Wed Aug 26, 2009 3:52 pm

Bi-lateral IJV occlusion.

Bi-lateral stents inserted to restore blood flow, surgery today.

She had very similar symptoms to Mel lets hope she gets the same results!
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Postby CureOrBust » Wed Aug 26, 2009 7:54 pm

best wishes to your friend.
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Postby mrhodes40 » Thu Aug 27, 2009 6:02 am

Jamie,

You hinted once that Mel may feel a little guilty with her feeling so much better after treatment, but I want you to know that for Mel and now her friend to be treated is really important information for the rest of us.

I do not think this treatment can tell the medical community much when they look at me, I am too brain damaged to show much. Anything I gain is going to some after a lot of rehab and work, perhaps in a couple of years if I am fortunate.

Knowing that there are people whose MS was in such an early stage things literally seem to turn around for them is VERY heartening for me.

I am so grateful someone as able bodied as Mel decided to go ahead and do this.... My many thanks to her.

I will hope that her friend has the same results!
Marie
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Postby Jamie » Thu Aug 27, 2009 6:17 am

Your attitude is incredible Marie.

I think axonal repair is crucial for you guys, this is only phase one.

For those lucky enough to still be within the range of plasticity and see dramatic results this really could be the end of MS in their lives.

For others with a lot of accumulated damage this isn't the end but the beginning of the end.
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Postby mrhodes40 » Thu Aug 27, 2009 6:30 am

For those lucky enough to still be within the range of plasticity and see dramatic results this really could be the end of MS in their lives


Yes I have grown children. I cannot tell you what a relief it is to me to know that if they get this it will never be for them as it is for me.

I have had this guilt hanging over my head that maybe I "gave" them MS. That is gone :D :D

After 18 years of this and failure after failure of treatment to have one that is real is amazing
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
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Postby LR1234 » Thu Aug 27, 2009 6:45 am

Just to add....even though you have got damage Marie the body can heal itself....I have read many books on people with MS who have managed to regain function so its not out of the question. Fingers firmly crossed for you.
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Postby catfreak » Thu Aug 27, 2009 7:13 am

I feel myself getting worse month by month but I am still mobile and Dr D thought I could really benefit from CCSVI. He said I was the type patient he had seen the most success with.

I hope that is true. That I am like Mel and have a dramatic recovery. Just the thoughts of this is so overwhelming I could break out in tears of joy. I am trying to reserve the happy excitement and tears until later.

One week from today I will be getting ready for my procedure. 8O

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Postby daniel » Thu Aug 27, 2009 9:00 am

In terms of axonal / nerve repair... the most interesting results I've read were from Dr Terry Wahls who was in a wheelchair for years due to MS and managed to alter her diet in such a way that she is now able to walk again and even go bike riding. She suggests eating lots of sulfurous vegetables (kale, broccoli, etc) and fruits daily... 9 cups of all-colours fruits/vegetables minimum plus mixed with neuro-stimulation (like in physical therapy) to get your muscles working to release the proper endorphins (or other relevant chemicals... forgive me I can't seem to find all her previous posts on her site..)

I think the general idea is to provide your body's cell's mitochondria with the optimal possible food/energy nutrition sources and to stimulate your body (either through exercises or neuro-stimulation) so that you're in the best condition to allow your body to repair itself.

General diet recommendations:
Eat a wide variety of fruits, and vegetables, Include red, blue,
purple, yellow, and green fruits and vegetables. Gradually increase
the number of servings per day, with a goal of at least 9 cups of
vegetables and fruits per day. Three cups should be dark green
(spinach, chard or mustard greens) or from the cruciferous (cabbage,
kale, collards, broccoli) family, three intensely colored (red,
orange, blue, purple, black) and three others. Do not count corn, rice
or grain in the vegetable count. Eat fish two to three times a week
and organ meats once a week. For those who do not eat fish, you can
eat omea-3 enriched eggs ( from or chickens who have been fed flax
meal, or allowed to free range and eat bugs, crickets and greens).
Other options go get omega 3 fatty acids are fish oil, flax oil or
hemp oil. One to two tablespoons of flax or hemp oil daily would be
comparable to 2 to 4 grams of fish oil daily.


Electrical stimulation has been shown to increase muscle mass in paralyzed individuals. Thus it is likely to be able to increase mass in people with MS. But I predict that stim alone will not be enough to restore walking. It is a long slow process to restore strength. The stim should help produce more muscle mass -- but without the exercise program the gait is less likely to return -
Application of both is likely to be the most beneficial -having a base of slowly growing the muscles should allow the gradual increase of volitional exercise. Having a PT can help identify which exercises to add to get the most benefit for the effort expended.

I don't know what happens with stim alone - there would be some rationale to think the biochemistry in the brain would be improved even without exercise -- but restoring more normal walking, sitting or other muscle functions probably requires exercise and re-education of the brain - muscle pathways.

Re the food/ micronutrient/ supplement questions

I can only report my observations on my own experience. Food - will have more micronutrient content than supplements alone -- But there may be benefits from targeted augmentation with supplements in addition to food - particularly if tailored to the individual based on medical family history etc.
Your observations about the dilemma for most who are struggling to get by is unfortunately too common - and I am sure makes it frustrating for anyone who is trying to regain their health.

Food alone -- won't solve MS - because it is multifactorial - with toxic exposures, micronutrient deficiencies, food allergies, genetic differences and infection exposures and current infections all adding up to each person's unique experience with the disease. That makes providing and finding a generalizable solution so elusive. Finding out what are you own contributions to the disease state -- requires finding someone who can unpeel the onion of all these factors.

From my own experience -- very few physicians understand this -- and I am unraveling the onion slowly myself. An organization -- institute for functional medicine has international membership of physicians and other health professionals who view chronic disease including MS through this lens. Going to there web site - you can find the pages for providers and look under the international provider listings to find someone who does.

Unfortunately I don't have many answers - only questions and my personal observations/ experiences which may or may not be generalizable to others -- I wish that I did -- and I wish that we'd get the study approved so that we could begin accumulating experience with others.


from Terry Wahls' site (link)
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Postby mrhodes40 » Thu Aug 27, 2009 10:44 am

Hey thanks guys!

I am personally hopeful. I can walk without a cane for short distances. I usually use one though outside the house. I think this means I have potential to regenerate things. The Brain That Changes Itself is great for encouraging a person that way! I am getting a walkaide or a bioness too which is muscle stimulation as Dr Wahls suggests. The cool thing is that without constant hits from the wonky circulation it should "stick"!

But the recovery of people with little disability is still really great news to me. I have great hope for Mel's friend!
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 Ernst » Thu Aug 27, 2009 10:57 am

I have red Terry Wahls pages and also have sent couple of mails to her, and she was so kind that she replyid to me. Her ideas are really interesting about mitochondrial health and that muscle stimulation too. Just have to admire her. Her story makes me think the connection to CCSVI? Can the optimal mitochondrial function effect positively to vasculars? who knows.. i dont :)
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 Jamie » Thu Aug 27, 2009 11:54 am

I'm glad you've read that book Marie!

It inspired the crap out of me.

So much so that I keep meaning to write instructions and a reading list for Mel in case I have a stroke.

I'm still in here! Help me get out!

If that woman who had literally half a brain can recover with the right exercises etc, so can MS'ers IF the ongoing damage can be stopped.
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Postby Loobie » Thu Aug 27, 2009 12:08 pm

Jamie wrote:If that woman who had literally half a brain can recover with the right exercises etc, so can MS'ers IF the ongoing damage can be stopped.


I need to get that book because the end of the sentence above is what it's all about for me. Stop the ongoing damage and I can do anything that requires pushing yourself and working physically. I just need to feel like we've stopped the damage. I exchanged emails with Dake today and he reitterated how he's itching to get at my left jug. I can't wait, and like Marie, it's the newbies who've had this done whose stories keep me really inspired.
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Postby Jamie » Thu Aug 27, 2009 12:10 pm

Lew,

Get that book.

Norman Doidge.

http://www.normandoidge.com/normandoidge/MAIN.html

Available on Amazon etc.

J.
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Postby CureIous » Thu Aug 27, 2009 12:27 pm

:)
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Postby mrhodes40 » Thu Aug 27, 2009 1:32 pm

Mark! Yeah!!! Keep the good reports coming. Lew and I both are on record now; we love these stories from you newbies...


marie
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http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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