A (not so) simple question

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

A (not so) simple question

Postby CindyCB » Sun Dec 05, 2010 12:59 pm

Hello everyone,
Forgive me posting my first post with a question, am struggling very badly with brain fog and trying to get my head around CCSVI.

I am currently undiagnosed (and being investigated for Lyme disese at the moment) but have lots of symptoms of MS.

I have had several MRIs that do not show any lesions or anything of significance.

I waas wondering if anyone has been reported to have CCSVI without lesions, and if they got relief of symptoms by having it corrected.

Many thanks everyone.
Cindy
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Postby 1eye » Sun Dec 05, 2010 1:04 pm

If you have time, take it.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby CindyCB » Sun Dec 05, 2010 1:32 pm

Apologies, I don't understand what you mean?
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Re: A (not so) simple question

Postby GuRu » Sun Dec 05, 2010 1:56 pm

CindyCB wrote:Hello everyone,
Forgive me posting my first post with a question, am struggling very badly with brain fog and trying to get my head around CCSVI.

I am currently undiagnosed (and being investigated for Lyme disese at the moment) but have lots of symptoms of MS.

I have had several MRIs that do not show any lesions or anything of significance.

I waas wondering if anyone has been reported to have CCSVI without lesions, and if they got relief of symptoms by having it corrected.

Many thanks everyone.
Cindy


May be this video help you

http://www.youtube.com/watch?v=Ps3---IJP_4
We must learn our limits. We are all something, but none of us are everything.
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Postby Cece » Sun Dec 05, 2010 2:04 pm

The only person who comes to mind right off the bat is the daughter of one of the original pioneers last summer. The daughter did not have a MS diagnosis but some symptoms; she was tested and treated for CCSVI.

The other that comes to mind is the Sardinian children that Dr. Zamboni studied in the late eighties or early nineties. They did not have MS lesions at that time, but they did have CCSVI and jugular malformations. Twenty years later, at least 90% of them had MS. This has not been published on but was something he said at a conference last year that Cheer attended.

Are you near to any of the treating centers? I found it helpful to get tested for CCSVI, which I was found to have (both by MRV and ultrasound doppler). It took a part of the emotional burden off of my upcoming trip to get it treated; I don't have to wonder if I have it, I know I do.

I am sorry that MS has come into your life, if indeed it has. With CCSVI appearing to have a very high association with MS, one way to know if you have MS might be by getting tested for CCSVI? It's a different angle on this.
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Re: A (not so) simple question

Postby CindyCB » Sun Dec 05, 2010 2:29 pm

GuRu wrote:
May be this video help you

http://www.youtube.com/watch?v=Ps3---IJP_4


GuRu,
Thank you so much for posting this.
I had actually seen this guy's earlier posts and he describes perfectly how I am currently feeling (all his posts about Lyme destroying the mind) - to see him looking so much better now is very encouraging! :D

A lot to think about.

Cece, thank you for your reply.
I am in the UK and it's very, very new over here by the look of it - I am nowhere near the research centre currently (opposite end of the country in fact!!) but if it looked like a plausible option I am sure my husband would get me there somehow!

I know exactly what you mean about knowing what you're dealing with. It's always better to know the beast you're battling.

Cindy
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Postby soapdiva884 » Sun Dec 05, 2010 2:38 pm

1eye wrote:If you have time, take it.


WHAT is this supposed to mean????
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Postby Cece » Sun Dec 05, 2010 2:40 pm

soapdiva884 wrote:
1eye wrote:If you have time, take it.


WHAT is this supposed to mean????

I understood it as advice to take her time and not rush into CCSVI treatment (because she is presumably early in her disease course and the docs have not yet standardized and perfected the treatment of CCSVI.)

1eye, sorry to answer for you, did I get it right?
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Postby CindyCB » Mon Dec 06, 2010 5:09 am

I'm just wondering if anyone that had the procedure done had severe neck pain and tight scalene muscles before treatment.

I've had a problem with my neck for years, with no known cause, the muscles are extremely tight and hard and nothing can relax them. As a result I experience terrible pain and tension headaches.
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby CCSVIhusband » Mon Dec 06, 2010 5:28 am

CindyCB wrote:I'm just wondering if anyone that had the procedure done had severe neck pain and tight scalene muscles before treatment.

I've had a problem with my neck for years, with no known cause, the muscles are extremely tight and hard and nothing can relax them. As a result I experience terrible pain and tension headaches.


My wife did ... they loosened up after the procedure (I could feel it in giving her neck rubs).
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Postby CindyCB » Mon Dec 06, 2010 5:43 am

CCSVIhusband,
Thank you for the reply.

I did discuss this problem with a neurosurgeon and we talked how my right ear went totally deaf after I had to lay in an MRI machine for 2 hours and I was extremely dizzy upon getting up - he commented on how one of the veins can sometimes get pinched when in certain positions but we didn't take that discussion any further.

Our of interest was your wife checked for Lyme along with/before her MS diagnosis? I was just reading about Fibren and trying to get my head around it all - not easy!
Cindy
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby CCSVIhusband » Mon Dec 06, 2010 5:45 am

She was ... no Lyme disease.

She was a swimmer though (we always thought the muscles were tight from that) ... guess we were wrong to some degree. It's very INTERESTING how all of this ties together.
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Postby CindyCB » Mon Dec 06, 2010 5:58 am

It really is - there has to be a connection between it all, but I guess these things take time to work out.

Was she vitamin D deficient at all? I found out I was severely deficient a few months ago (I am also hypothyroid) and since supplementing with vitamin D I noticed the nerve pain I experience (all down my right side) is better and my migraines are less severe.

I noticed on the 'Essential Health' website (in the UK, Glasgow) advocates vitamin D usage along with Omega 3 (another supplement I regularly take) to help maintain veins.

I know Lyme and MS suffers usually have low levels of vitamin D - but I guess that's a chicken and egg scenario as I am very ill and spend most of my time indoors, so which came first?

Cindy
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby AMcG » Mon Dec 06, 2010 6:14 am

Hi CindyB

My condition sounds similar to yours. I still have not had a positive MRI after four years but my Neuro is certain I have MS. I also have very tight neck and scalene muscles especially on one side. I was liberated in April and had a dramatic improvement. I am now close to calling myself normal, the fatigue has gone, my balance is good, urinary problems have gone, my eyesight is sharp etc. I will not go on as I am sure you know the story.

My neck problems are very longstanding too and were very painful. I have been having acupuncture and massage for over four years which helps; my masseuse remarked that my neck muscles felt like pushing at wood when we first started.

I still have problems with my neck. The stiffness has improved but has not disappeared. My right side is OK but I still have tight muscles on the left side and sometimes between the shoulders. I am also quite deaf in my left ear. The sad thing is that right after my liberation the stiffness was gone and I could hear with my left ear! Since then I was good for about a month and then I commenced a series of six chest infections which brought back some of my MS symptoms. Thankfully I have been free of infections for over a month and I am feeling pretty good again. My neck problems are now no more than discomfort. I rarely have what I would call pain.

I had angioplasty on my left side and a stent on my right. When I had a doppler checkup in August my right side was flowing well but my left had low flow again, not as bad as before April but less than 25% of what it should be. So my belief is that local drainage on the left of my neck is now poor and that is causing the muscle stiffness and deafness.

I would love to have the procedure done again but I cannot afford it at the moment. But that is no great problem and I am v. grateful for the benefits I have already had. So I am waiting either for an inheritance or for the NHS to make the treatment available. I might have a long wait. I have also booked an appointment with my GP when I am going to ask him if the neck problem can be investigated separately from the MS as a local vascular problem, in other words a referral to an IR but I am not very hopeful.

I do think what 1eye and Cece have said is good advice. If your MS is not aggressive it may be best to wait. I am confident there are a lot of developments to come in the next twelve months related to CCSVI.
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Postby CindyCB » Mon Dec 06, 2010 6:47 am

AMcG,
Thanks for the reply.

Well this is the thing, I've had this problem (whatever it actually is!) for a long time now, it's been bad for about 4 years and very bad for the last 2+ of those - but still no real diagnosis.

I'm currently waiting results for Lyme disease and a few other things (from the Breakspear Medical Group, have you heard of them?) - of course this has been a huge outlay of money already so even if I wanted to rush into anything I think my husband would object due to lack of funds ;-)

Where did you have the procedure done? (If you don't mind me asking).

Yes! 'Wooden' shoulders! An osteopath I saw a couple of years ago commented that my scalene muscles were the tightest she'd ever seen and couldn't relax them, neither can my chiropractor, I've tried all the stretching exercises but nothing works - and mine is worse on the right side, which is the side I am hard of hearing on (and have been for about 10 years) and also the side I have most problems on.

I actually did have an angiogram of the brain but it stopped about level with the bottom of my ears so didn't include the neck.

It did show I had one dominant vein (transverse sinus I think?) on the left and reduced flow to the one on the right but was told this was just a normal variation. I don't know if this is significant or not?

I have uploaded a (blurry) photo of it here -
http://i1227.photobucket.com/albums/ee4 ... /veins.jpg

As you look at it the image is reversed (so the left is my right).

Cindy
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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