CCSVI, cause or symptom?

[EJC]

Blood flow. Ebv. Heavy metals. Lipids. Gray matter. White matter. Inside out. Outside in. Kale. Jaws. Atlas. Stress. Fear. Valves. Veins. Vitamin d. Genetics. Is there another disease with more theories and less answers?! Truth is we dont know shinola.

It's infuriating isn't it, but I think one very important step happened when Prof Zamboni spread word about CCSVI, that MS is clearly more than autoimmune, sure "we've" know that for a while but now medicine is starting to accept it.

It has opened peoples minds (well most people anyhow!) to other trains of thought. There is a risk though that all the effort is put into one subject which may actualy turn out to be another symptom, albeit a terribly important one.

I think that's where things have gone slightly off track. There is vast amounts of time, energy and patients money being thrown at trying to "cure" CCSVI. I think this would be better spent trying to find out why it's there to start with. I think it's a symptom of other medical conditions/complaints.

[MarkW]

Hello EJC,
Some questions for you and Emma:
1-was Emma's de-stenosis a complete procedure ? which veins where checked ?
2-what has happened to the treated valves in recent times ?
We are both on the 'treat symptoms' page. However, I remain to be convinced that many pwMS are receiving complete de-stenosis in one procedure, most are not in my opinion.
I will assess the atlas alignment data next but there is far less information than with CCSVI syndrome.
Best wishes,
MarkW

MarkW wrote:
There is insufficient data available to give a definite answer. It is a personal choice if you have the symptom of extracranial venous stenoses treated or not. I did just that twice and am glad I did. I understand I had symptoms treated and realise it will probably be many years before your question can be definitely answered.

EJC replied:
Yup, Emma chose to have treatment and was one of the growing number of people who had initial great results only to see them fade away.
It's why we've decided to go down another route, however that other route is creating questions in my mind that I can't answer.
I'm using this forum to share those questions and get feedback.
========================

[EJC]

Emma was seen by Donald Reid in Edinburgh.

She had both IJV's and the azygos ballooned.

She was diagnosed with malformed valves in both ijv's along with hypoplasia of the left ijv.

The azygous had an 80% to 90% stenosis ballooned.

At Emma's rescan 7 months later, both valves were found to have returned to close to their pre procedural condition.

Full rundown on the following thread.

http://www.thisisms.com/forum/chronic-c ... 15074.html

[Jugular]

I think you've answered your own question. If your Missus experienced improvement in her motor function that points to a causitive link between CCSVI and MS. If impairment of motor-nuero function precedes CCSVI then correcting an after-effect should have no effect on the original underlying condition. There would be more support for the notion that CCSVI is caused by neurological impairment if all CCSVI relieved was something like fatigue.

[EJC]

I think you've answered your own question. If your Missus experienced improvement in her motor function that points to a causitive link between CCSVI and MS. If impairment of motor-nuero function precedes CCSVI then correcting an after-effect should have no effect on the original underlying condition. There would be more support for the notion that CCSVI is caused by neurological impairment if all CCSVI relieved was something like fatigue.

Got to be honest, I haven't got a clue what you're trying to say here.


I've read it and re read it a number of times and still can't make head nor tail of it.

[Jugular]

Your theory is that MS muscle/nerve weakness causes the neck valves not to work properly which causes CCSVI. If that is the case, opening up the neck veins should have no effect on MS muscle impairment - but it seems to in many cases. Thus, CCSVI seems to plays a causitive role in MS, not the other way around.

[EJC]

Your theory is that MS muscle/nerve weakness causes the neck valves not to work properly which causes CCSVI. If that is the case, opening up the neck veins should have no effect on MS muscle impairment - but it seems to in many cases. Thus, CCSVI seems to plays a causitive role in MS, not the other way around.

No you've misunderstood my writing.

I'm suggesting muscle/nerve weakness in the neck caused by trauma, surgical intervention or atlas misalginment (or similar) causes CCSVI which in turn compounds the symptoms of MS.


I don't for one moment think MS causes CCSVI, I also don't believe that CCSVI is the "cause" of MS (well not enitrely in it's own right) - I do however think it exacerbates other problems, which together are currently what we term as MS.

Good venous circulation and good oxygenation is certainly part of the overall answer. It's just not all of it.

[Cece]

At least the azygous may have stayed open. There is no good treatment for hypoplasias at this time. So even if the CCSVI treatment had lasted, which it didn't, it seems reasonable that she might be in a situation of looking for additional adjunctive treatments because that left jugular is still going to be hypoplastic.

In Dr. Sclafani's thread, he floated the idea of using botox on a muscle that is compressing the vein. That would be a bad idea if using a muscle relaxant that effectively paralyzes the muscle would have a detrimental effect on the valves within the vein.

How would anyone go about proving a connection between neck muscles and IJV valve health? Animal research, I suppose. Botox the neck muscles and see if there's an effect on the IJV valves? I don't know that such research would go forward unless there was more to support the idea, and I can't think what research would need to be done to put together such support. But I am all for research on IJV valves, and CCSVI, and endovascular treatment, and all of it.

And I am all for your Emma getting back her improvements. Maybe a misaligned jaw has an outsized effect when the jugulars are blocked and the body is relying on collaterals, if the misaligned jaw and atlas are in some way infringing on those collaterals.

[EJC]

In Dr. Sclafani's thread, he floated the idea of using botox on a muscle that is compressing the vein. That would be a bad idea if using a muscle relaxant that effectively paralyzes the muscle would have a detrimental effect on the valves within the vein.

This is intersting, mainly as it suggests there is at least an interaction between muscles and viens.

How would anyone go about proving a connection between neck muscles and IJV valve health?

This is where I'm stuck, becasue before proving anything, being non medically trained I have no idea about the anatomy and the interaractions that take place in that area of the body, I'm not sure where to start though. Muscles would be dealt with but physio type people, veins dealt with by vascular types - and I think this is what's causing the problem. Medicine has become so specialised there is really no one left looking at things globally, the bigger picture if you like.

I would like to understand the interaction between the muscles, viens and nerves of the neck, head and upper spinal area. Who exactly do I approach about this?

And I am all for your Emma getting back her improvements. Maybe a misaligned jaw has an outsized effect when the jugulars are blocked and the body is relying on collaterals, if the misaligned jaw and atlas are in some way infringing on those collaterals.

We're going to give Dr Amirs theories a shot Cece and report what we find on open forum. Emma has reached that point in her MS development that she's in a no choice position as every conventional route has nothing to offer and CCSVI treatment was transient.

We've ended up where we are now by accident, it was due primarily to the enourmous amount of Jaw pain Emma was suffering, It had reached a level where she could only consume liquid. In our travels we stumbled across Amir and figured we had nothing to lose. Only days in, the jaw pain is gone, Neuralgic pain is being managed (not yet completely gone but far more bearable) eyesight improvements are fluctuating but are close to permanent and Emma is yet to have any treatement to her upper spine.

The thing is, Amir is learning all the time, it's refreshing to find a medical specialist that interacts with his patients and behaves like a "sponge" when it comes to absorbing information and understanding your ailment. Rather then assume the MS diagnosis is right he takes a left field look at what is happening to each patient. Interestingly it was MS pateints seeking him out rather than the reverse that I find fascinating, along with the fact that the Edingburgh clinic happen to have arrived at a similar connection at almost the same time. At least then you don't feel completely mad!

[MarkW]

Hello EJC and Emma,
My advice is that all stenoses need to diagnosed, treated and re-treated as needed, if affordable. This must cover vein valves, webs, septums, pressure from atlas vertebrae, mis-aligned jaws etc etc. My advice for you is to have the first group (vein valves, webs, septums) re-checked by Mr Donald Reid and covering all possible veins using catheter venography and intravascular ultrasound.
Focussing on a few veins (IJVs+Azyous only) or just the Atlas is a mistake in my view. If possible restart Copaxone, as Prof Zamboni recommends, if the NHS is willing. Vit D is also vital.
Kind regards,
MarkW

[EJC]

Hello EJC and Emma,
My advice is that all stenoses need to diagnosed, treated and re-treated as needed, if affordable. This must cover vein valves, webs, septums, pressure from atlas vertebrae, mis-aligned jaws etc etc. My advice for you is to have the first group (vein valves, webs, septums) re-checked by Mr Donald Reid and covering all possible veins using catheter venography and intravascular ultrasound.
Focussing on a few veins (IJVs+Azyous only) or just the Atlas is a mistake in my view. If possible restart Copaxone, as Prof Zamboni recommends, if the NHS is willing. Vit D is also vital.
Kind regards,
MarkW

We've decided to go another route Mark and will post findings on here.

We have had a chat with Tom and Donald in Edinburgh who both said they would be happy to retreat Emma, but they both suggested we look down the Jaw misalignment route first before considering re treatment for CCSVI as they weren't sure it would show any improvements second time round. They arrived at this conclusion after having a look at Emma's rescan at 8 months post procedure.

Emma was on the Copaxone for a year with no effect whatsoever except multiple injection site reactions and multiple relapses. We decided to ask the Copaxone nurse what the drug was doing and how it worked, she didn't know. So we asked the manufacturer what it did and how it worked, they also didn't know (really - they actually said "We're not completely sure"). We asked Emma's neurologist what the Copaxone was doing - He pointed us to the trial results, we asked him what it did and how it worked, He didn't know. We'll stop that thanks. Drugs are not the answer to MS.

Emma's vitamin D level is perfect, Her B12 levels were low along with folates which we've addressed and she tops up three monthly.

We also don't have another £8,000 (plus expenses) to get the CCSVI done again.

So we figure we'll address the physical abnormalities we've discovered in Emma's body, jaw misalginment, upper cervical misalignment, not just the atlas but pretty much all the vertebra. Then if that shows no improvements we'll have a rethink.

[Amir]

Hello EJC and Emma,
My advice is that all stenoses need to diagnosed, treated and re-treated as needed, if affordable. This must cover vein valves, webs, septums, pressure from atlas vertebrae, mis-aligned jaws etc etc. My advice for you is to have the first group (vein valves, webs, septums) re-checked by Mr Donald Reid and covering all possible veins using catheter venography and intravascular ultrasound.
Focussing on a few veins (IJVs+Azyous only) or just the Atlas is a mistake in my view. If possible restart Copaxone, as Prof Zamboni recommends, if the NHS is willing. Vit D is also vital.
Kind regards,
MarkW

Somethings are absolutely fundamental. The correction of the Atlas, jaw asymmetry and the stenosis but have serious reservations regarding the use of immuno-modulating drugs!

[1eye]

I think a lifetime of bad or even marginally destructive habits, like alcohol drinking, can add up to a catastrophic failure which is hard to recover from, especially when there is resistance to admission of its existence. It's like metal fatigue in an airplane. Some places it can happen without effect, but it may add algebraically with other instances, or it may happen in a very dangerous place.

The other thing that may be happening besides fatigue failures and coincidental bad luck, is aging due to the accumulation of things like exposure to cosmic background and other kinds of radiation. In the genetically or otherwise vulnerable, that can add up, to a mutation which is a straw that breaks the camel's back.

Congenital malformation may not lead to sudden or early failure, but may have a much delayed or contributing effect. At the same time I think whatever causes "MS", it is possible that in some people the best approach might be to do the cheapest or most convenient thing, and for others it may be critical to handle the the worst problems first. I think it is always best to take the earliest action possible. The farther damage gets, the more likely more of it becomes, and the more potentially catastrophic it is.

If the only cause is a lone traumatic event, that does not preclude another similar event that has a synergistic effect in combination with earlier damage, and the result can be far worse than the component parts. Also, the combination of one type of damage with another, like bone posture problems with circulatory problems, may be more destructive than either alone, and in some people more so than others.

[MarkW]

After a decade of reading about this disease I conclude 'MS is multifactorial'. Prof Zamboni says this as well (check out the Holiday Read thread for his review paper). This means we need to use all the tools at our disposal to fight the disease and its progression.
Step One is Vit D - I am delighted to know that Emma has high levels of vit D (above 100nmol/L in Feb ?).
Step Two is destenosis - the importance of treatment order is unknown. However I suggest that until all stenoses are treated we do not know the total impact of de-stenosis.
Step Three is drugs. These may be used to treat other symptoms or have effects on the immune system.

Let me share a pharmaceutical secret - the people in white coats cannot tell you how the majority of drugs work (I am serious). For Copaxone, my best guess is that the immune system attacks the Copaxone molecule instead of myelin, reducing nerve damage (well maybe and that is after 25 years of pwMS taking the drug). Worth taking if the NHS/insurance company is willing to pay for it and side effect are minimal. (NHS stopped it for me). Prof Zamboni says stick with your drug regime when being treated for CCSVI syndrome, I agree.

I wish Emma well and hope jaw alignment gives some relief. I am disappointed that EHC want 8k for a second treatment and appreciate this is a significant cost. Are EHC simply saying that they do not think that balloon venoplasty will keep the vales opening ?? My next steps are x-rays of my skull/neck to investigate/rule out problems.

Kind regards,
MarkW

[EJC]

Are EHC simply saying that they do not think that balloon venoplasty will keep the vales opening ?? My next steps are x-rays of my skull/neck to investigate/rule out problems.

No they aren't saying that at all. What they are saying is they are starting to feel there are other factors involved based on their analysis of their patients and that multiple CCSVI treatments isn't the first default. They suggest checking other areas first before deciding to go for a repeat procedure.

My next steps are x-rays of my skull/neck to investigate/rule out problems.

Emma had skull and teeth x-rays done a few weeks back. Who will be assessing your X-Rays?

Let me share a pharmaceutical secret - the people in white coats cannot tell you how the majority of drugs work (I am serious). For Copaxone, my best guess is that the immune system attacks the Copaxone molecule instead of myelin, reducing nerve damage (well maybe and that is after 25 years of pwMS taking the drug).

We were provided with an explanation similar to the above and our decision to stop was based on this. The pharmaceutical manufacturer doesn't actually know what the drug does or how it works, it's a guess and they can sell this to the NHS for £10K or £20K a year? The mind boggles.

It also begs the question, If they don't know how it works how do they know it's not doing any harm?