CCSVI and CCVBP

[DrDiana]

Hi Everyone,

And thank you, HappyPoet, for the kind welcome (it's tough to be a lurker here, isn't it? ha).

A few of you know that I'm an eye doc with EDS (and both kids have EDS. Heck, even the dog -- I kid you not). I noticed the link between EDS and MS and I began to develop signs of MS, I have 1 brain lesion, and I have CCSVI treated with angioplasty (no stents). I have the awful autonomic dysfunction that brought me to my knees (and my sons').

The more docs and patients we can get together, the better, as we all see this from a slightly different lens, don't you think?

I'll get on this forum more often soon, as I'm pulling together a few clinical trials that may help us all. Cool?

Meanwhile, being the OCD person that I am, I wanted to ask Neava -- do you know if you have EDS? I'd be happy to talk you through it, but the cysts that you describe could possibly be what we call "spherules" in the classic EDS world. They are basically fatty cysts (we ARE NOT fat - the fat herniates through faulty connective tissue), and they turn up in the strangest places! I've had them on my thyroid, my spine, under my scalp and elbows and shins! Heaven only knows where else they may be lurking.

Please holler if you need help with figuring that out. I missed EDS with my own body the first time through, but sneaky little things like cysts can help diagnosis it.

I look forward to getting to know you all.

Hugs...

[NZer1]

Hi Dr D, welcome.
I can see you will be a positive addition to the group.
By the way did you know;
I have CDO, its like OCD but all the letters are in alphabetical order AS THEY SHOULD BE, lol.
Regards Nigel
(Neava and I are in the same area and coffee group, )

[Cece]

I have CDO, its like OCD but all the letters are in alphabetical order AS THEY SHOULD BE, lol.

That had me laughing, Nigel.
Very glad to see Dr. Diana join the group. We all have some Ehler-Danos education forthcoming! If it's as underdiagnosed and associated with MS as it seems to be, I am glad to be learning about it.

bestadmom, I am impressed by those scans....

[HappyPoet]

Hello Dr. Diana,

Hi Everyone,
The more docs and patients we can get together, the better, as we all see this from a slightly different lens, don't you think?

Agreed!

I'll get on this forum more often soon, as I'm pulling together a few clinical trials that may help us all. Cool?

Very cool.

[blossom]

hi dr. diana, the looking through different lenses is needed. the more you docs put your heads together the better.

hopefully soon you will have your thread here on tims so we won't miss anything you are bringing to the table and some much needed help and understanding for some of us.

one shoe doesn't seem to fit all but at least it gives us more hope and choices in finding the shoe that fits. there's a lot of us still running around barefoot. and, it can get pretty cold out here.

[uprightdoc]

Hello everyone and hello again Dr. Diana. It's nice to have you here.

I am sorry I missed the conversation yesterday but I was with a contractor all day working on our solar system.

I have to say, of all the cases I have been in contact with through my blog, website and the TIMS site Dr. Diana's case is one of the most fascinating and unusual, not at all like any of the MS cases I have seen from this site. The only similarity is in the symptoms.

[HappyPoet]

Hi Dr. Flanagan,

If you have time, could you please take a look at this thread to see if there is anything you can do to help? New technique during CCSVI-treatment in Poland.

Thank you very much. (Best of luck to you with your solar system!)

[uprightdoc]

Hello Poet,
It's an awesome simple solar evacuated tube collector for my hot water and radiant heat system. It should have an ROI of about two years. You can't beat those kinds of returns.

I scanned the thread. My guess is that the benefit of injecting the contrast media into the arteries is probably because it follows the direction of blood flow rather than running counter current to blood flow. This would probably be futher helpful in checking the in line performance of the valves the way they are designed to work with blood flow.

The impingement at C2 could be due to cervical kyphosis. Kyphosis forces the jugular veins to bend backwards sharply around the upper cervical spine. For a good example of kyphoscoliosis see the images CurIous's posted early on in this thread. The muscle impingement in the lower neck further points to some type of cervical disorder. It's always a good idea in all MS cases to have plain view x-rays of the cervical spine.

I'll go back and reread the thread later. In lieu of the specific upper cervical option, there are some good craniosacral doctors in Europe.

[civickiller]

My ucc dr. Called me to see how I was doing. He said if it was the ucc adjustment that made me worse that I should improve as my atlas goes out of alignment, is that correct?

[uprightdoc]

Hello Civickiller,
Yes. It's hard to realign the spine. Bones slowly drift back to their prior position, which is why it takes repeated visits.

[neava]

hi doc,
thanks for your reply,

the NS did not think there is a connection to chiari and arachnoid cyst, as far as they think, the cyst are in the wrong layer of the spinal cord,
so they are sending me back to NL to determine wether MS has caused these cysts,,,, lol.

i have arrange of symtoms, from eye problems to urinating, these all point to MS, but also with the chiari the symtoms are the same, i also have high foci hypertensites in the brain, to show MS, these have not altered for three yrs, they have proven that my brain is not progessive, but dymenlyating diease,

unfortunitly im in NEW ZEALAND, and afraid there arnt any good specialists for chiari, but with anywhere the medical world can sometimes be laxed.

[DrKoontzDC]

Hello DrDiana,

I know it's a bit late but I just wanted to say hello & welcome to TiMS! I look forward to hearing more from you.

[uprightdoc]

Hello Neava,
I don't know what you mean by the surgeon said the cysts were in the wrong layer of the cord so they couldn't be connected to the Chiari. He was probably referring to your symptoms, not altered fluid mechanics caused by the Chiari. The spinal cysts can be below (subdural) or on top of the dura (epidural) mater of the cord. The cysts are filled with fluid and it is often CSF. The theory is that some people are born with cysts or weakness in the meninges of the cord that perdispose them to cysts. Some people get them later. Chiari malformations however disturb CSF flow strong enought to cause syrxines in the central canal of the cord. Chiari malformations are often associated with scoliosis and tethered cord syndromes. Scoliosis causes functional stenosis and alters blood and CSF flow in the cord and spinal canal. T6-T9 is the apex of the normal throacic curve. It is also the apex area of lateral (scoliosis) or sidewards bends in the throacic spine. Bends like blockages in blood vessels change fluid mechanics just like a bend in a river. If CSF is under sufficient pressure such as from a curvature and there is an weak spot in the wall of the arachnoid mater it can cause a cyst to form. It is probably not causing any of your symptoms. It simply suggests that you fluid stress in the cord.

[neava]

hi dr diana

these cysts are fluid filled, they grow quite fast, not fatty deposits.
when the last one was operated on, it exploded.
this new one is causing bigger problems, and has grown 2mm in 6months, im now awaiting surgeon appointment to know if and when they will operate to remove it,

i dont know what EDS is, it would be great to talk through things,

thankyou so much, input on any of these would be great, im been left hanging at the moment.

[uprightdoc]

Neava
Do you have an plain view x-rays of your spine?