Survey Wish lists for treatment outcomes of CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
Family Elder
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Survey Wish lists for treatment outcomes of CCSVI

Post by NZer1 » Thu May 13, 2010 3:52 pm

I am wanting to get together a list of things that as individuals we would be wanting as an outcome of CCSVI treatment.
I thought keeping it simple and then using the list as a guide for the development of trails that will be used in the next round of treatments on offer with IRB approved sites.
As we are well aware there are a wide range of symptoms we suffer. The important thing is to get an idea of what is most common and design tests that can measure the subtle differences that treatment creates.
There will be things for some that others do not have, and things that CCSVI treatment will effect with time. The main objective is to identify the most common and measurable.

My list top priority

Trigeminal Neuralgia
Bladder frequency
Balance/leg spasticity
And I nearly forgot cog fog

Please add you list.
Last edited by NZer1 on Thu May 13, 2010 8:19 pm, edited 1 time in total.

Family Elder
Posts: 9332
Joined: Mon Jan 04, 2010 3:00 pm

Post by Cece » Thu May 13, 2010 4:16 pm

Great idea, here goes:

foot drop
visual special effects/optic neuritis
heat intolerance
super cold feet
neck pain
"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

User avatar
Getting to Know You...
Posts: 18
Joined: Mon Dec 28, 2009 3:00 pm
Location: Wichita, KS

Post by Wichita » Thu May 13, 2010 4:31 pm

Here are some inputs from my wife, the MSer in my family:

Bladder retention - this is measurable using ultrasound and measurement of volume when using a self-catheter

Walking / mobility - I think they used time tests to cover a certain distance in a recent drug trial

Numbing / tingling - seems highly subjective but maybe could be tested like an anesthesia doctor tests - apply a force and ask the patient if he feels it.
Choose Liberation.

User avatar
Family Member
Posts: 62
Joined: Tue Feb 24, 2009 3:00 pm
Location: Southwestern Ontario, Canada

Post by Hope66 » Thu May 13, 2010 4:39 pm

I say go big or go I have a single wish...

Halt progression.

be well all,
Dx March 2003

User avatar
Family Elder
Posts: 290
Joined: Sat Jan 02, 2010 3:00 pm
Location: SF Bay Area, CA

Post by ndwannabe » Thu May 13, 2010 5:26 pm


Leg drag
Leg spasm
Foot drop

Memory lapses / forgetfulness / word searching

Sensitive bladder

Bad sleep

Heat sensitivity

Sensitivity/ irritability in general - sounds, bright lights, strong smells, touches

Neck spasms

User avatar
Family Member
Posts: 31
Joined: Tue Apr 06, 2010 2:00 pm

Post by Onthelake » Thu May 13, 2010 5:31 pm

8 months ago I would have said severe fatigue and lack of balance, constant dizziness, heat intolerance, bladder, could do nothing physically stressful...then I started taking LDN and all that dramatically lessened or disappeared (bladder, heat) last October. It was like a miracle.

Now I am left with tinnitusssssssssssssssssss pretty much all the time, a bit of dizziness in the morning and when I look up, choking on spittle when falling asleep and nearly drowning a few times a month, balance problems periodically, brain fog, word finding periodically and my memory continues to grow worse.

I am hopeful for a trial in Barrie Ontario soon through Sandy MacDonald. He testified to Canadian parliament on May 11, they are working on it....hopefully soon.

I am a great believer in luck, and I find the harder I work, the more I have of it.  Stephen L.

User avatar
Family Member
Posts: 93
Joined: Sun Mar 21, 2010 3:00 pm

Post by smokey » Thu May 13, 2010 6:34 pm

heat intolerance
visual effects
stop progression (1)

User avatar
Family Elder
Posts: 178
Joined: Wed Apr 28, 2010 2:00 pm
Location: Ontario, Canada

Post by jackiejay » Thu May 13, 2010 6:47 pm

for someone with RRMS but no real palpable symptoms of CCSVI...I would wish for the treatment to halt the build up of iron deposits which is causing damage to the CNS over time.....with the treatment then there should be no more need of IMD's....

User avatar
Family Elder
Posts: 101
Joined: Sun Jan 31, 2010 3:00 pm

Post by bmk1234 » Thu May 13, 2010 6:54 pm

The headache I have had every day for 8 years.

User avatar
Posts: 1
Joined: Wed May 12, 2010 2:00 pm
Location: Ajax, Canada

Post by grayhairedlover » Thu May 13, 2010 7:08 pm

Constant pain
memory loss
I can handle the not walking but these three symptoms are the real downers for me.

Family Elder
Posts: 185
Joined: Thu Nov 26, 2009 3:00 pm

Post by jr5646 » Thu May 13, 2010 8:03 pm

Yes... Stop the attacks!
Shrink and hopefully rid myself of lesions..

I guess if the above happens, all the rest will fall into place, right?

Dare to dream.

I'd certainly welcome any/all of these symptoms GONE in the interim, for sure..

1) Fatigue - I shouldn't have to nap until i'm in my 80's
2) Pissing 15 times per day
3) Vertigo with nausea..
4) Balance.. I much rather drink 20 beers to walk like this :)
5) Strength.. (hand arm legs)
6) Lower back muscle spasms
7) Cog fog.. can't recall names especially..
8 ) Blurred vision / burning
9) Headaches
10) Heat intolerance
11) Emotional liability / Depression

User avatar
Family Elder
Posts: 825
Joined: Sat Nov 21, 2009 3:00 pm
Location: XinDian, Taiwan

Post by Algis » Thu May 13, 2010 8:08 pm

Would be very happy to be able to write and use my right arm/hand. If I could occasionally get out of my wheelchair few times a day - even if only to go to the toilets - I would be very, very happy. And if the complete incontinence would resolve I would be infinitely happy...

More than that will be a miracle :?

User avatar
Family Elder
Posts: 143
Joined: Wed Apr 21, 2010 2:00 pm

Post by JCB » Thu May 13, 2010 8:29 pm

1. fatigue
2. brain fog
3. writing with my right hand (I'm right handed)
4. right foot drop/ dragging

Would I be happy if I stayed where I am and the Progression stopped? of course I would. As stated above though, why not go big?

PPMS '07

User avatar
Family Elder
Posts: 412
Joined: Tue Dec 08, 2009 3:00 pm

Post by fogdweller » Fri May 14, 2010 8:08 am

leison load
fresh lesions ()i.e. progression)
phychologiocally measurable symptoms (get a good phychologist to check out the tested issues...short term memory, number manipulation, etc.)
Digital dexterity

User avatar
Family Elder
Posts: 865
Joined: Tue Nov 24, 2009 3:00 pm
Location: India

Post by sbr487 » Fri May 14, 2010 8:32 am

I am surprised no one said body aches. My initial problem was body pain for almost 10 years. Believe it or not, I think MS has eaten away my muscles, so I don't have it anymore. I have read it somewhere that active muscles will tend to create body ache and once they atrophy, one would not feel it.


1) memory, confusion
2) fatigue
3) gerd

Get rid of these, i am ready to work out the rest ...

Post Reply
  • Similar Topics
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”