Liberation follow-up results

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

Liberation follow-up results

Postby fiddler » Wed Jul 20, 2011 9:34 am

I just received my official "Preliminary Report" results back from the Eastern Maine Medical Centre:
FINDINGS: On the right, the right internal jugular vein valve was visualized and appeared to be normal. The cross-sectional area of the internal jugular vein was 1.79 cm/squared in the supine position and 0.10 cm/squared in the upright position. Flow was present in the internal jugular vein, both in the supine and in the upright positions. There was no evidence of reflux in the vertebral vein, both in the supine and in the upright positions. However, there was evidence of reflux in the internal jugular vein in the upright position but no evidence of reflux in the supine position.

On the left, the left internal jugular vein valve was visualized and appeared to be normal. The cross-sectional area of the internal jugular vein valve at the level of the mid-thyroid was 1.02 cm/squared in the supine position and 1.11 cm/squared in the upright positions. Flow was present in the internal jugular vein, both in the supine and in the upright positions. There was evidence of reflux in the internal jugular vein in the supine and in the upright-positions; however, the vertebral vein was competent both in the supine and in the upright positions.

IMPRESSION:
1. On the right, one out of four criteria met for chronic cerebral spinal venous insufficiency.
2. On the left, two out of four criteria met for chronic cerebral spinal venous insufficiency.


So, I still have some evidence of CCSVI... and I'm wondering what that means and what I should do now. Looks like my best source of info (for now) still might be TiMS, though they are supposed to send the images to Barrie, so I might eventually get some answers from Dr. McDonald, as well.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby 1eye » Wed Jul 20, 2011 10:09 am

I ain't no doctor, and I sure wish someone would explain to me what makes internal jugular veins collapse in the upright position. Anyway: your report said you have reflux, in a vein that has collapsed down to 0.1 cm sq. (RIJV, upright).

On the left, instead of collapsing, the vein gets wider when you stand up, and has reflux in both positions.

It sounds to me like you are back to square 1.5 anyway. Maybe IVUS could help?
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby Hooch » Wed Jul 20, 2011 10:46 am

Are your symptoms back? I have reflux back in my LIJ (although I flew to the appointment in Barrie and that is now considered contraindicated at least by one technician for 24 hours before testing) but I do not have symptoms back. My IR Dr Siskin told me that he believed that this was what mattered.
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Postby Cece » Wed Jul 20, 2011 11:17 am

I would love an explanation of why ultrasound should not be within 24 hours of flying in. This isn't new, I heard it last September from CCSVI Atlanta. Should we not fly in within 24 hours of the procedure itself too?

Ted, did you have any azygous or vertebral vein abnormalities? The flow down the left jugular when upright might indicate a blockage in the vertebral veins or, indirectly, the azygous.

Reflux near the area of the valves might still be common after valvuloplasty but for different reasons. Before it is because the blood cannot get out; after successful valvuloplasty, there may be some backflow from the direction of the heart because of the lack of valve to keep it out. This should not be nearly as bad as the situation was to begin with.

I agree with Hooch, any return of symptoms might be the clincher. There is also the possibility of having been undertreated.
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Symptoms

Postby fiddler » Wed Jul 20, 2011 12:27 pm

Nope, my symptoms have not really changed since my improvements, most of which occurred in the months after the procedure: energy, balance and bladder are all still much better (except for rare times), my mobility (dropfoot) is not really better (though better balance helps a lot), my left side strength remains a little better, and my hand (both hands) numbness and dexterity both still vary wildly within a day. The only new symptom that started with the hot weather is swelling of my left foot.

Given the above, I'm not going to rush off anywhere to get re-treated, but certainly I'm looking forward to more research results about what constitutes blood flow parameters that I SHOULD be worried about. Right now it seems to be mostly a guessing game and an art.

Cece, according to Euromedic, my azygous was fine.

1eye, as I understand it, there should be a big difference in jugular flows when I am upright or lying down, and that it is the stent over my left jugular valve that is keeping that side from being like the right. In any case, right now I still feel worlds better than before treatment, so from a symptom point of view, I haven't regressed at all.

Anyway, if someone knows of some metrics concerning what constitutes "bad" flow or how "bad" it should be before a person gets concerned, I'd like to hear about it.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Re: Liberation follow-up results

Postby scorpion » Wed Jul 20, 2011 12:55 pm

fiddler wrote:I just received my official "Preliminary Report" results back from the Eastern Maine Medical Centre:
FINDINGS: On the right, the right internal jugular vein valve was visualized and appeared to be normal. The cross-sectional area of the internal jugular vein was 1.79 cm/squared in the supine position and 0.10 cm/squared in the upright position. Flow was present in the internal jugular vein, both in the supine and in the upright positions. There was no evidence of reflux in the vertebral vein, both in the supine and in the upright positions. However, there was evidence of reflux in the internal jugular vein in the upright position but no evidence of reflux in the supine position.

On the left, the left internal jugular vein valve was visualized and appeared to be normal. The cross-sectional area of the internal jugular vein valve at the level of the mid-thyroid was 1.02 cm/squared in the supine position and 1.11 cm/squared in the upright positions. Flow was present in the internal jugular vein, both in the supine and in the upright positions. There was evidence of reflux in the internal jugular vein in the supine and in the upright-positions; however, the vertebral vein was competent both in the supine and in the upright positions.

IMPRESSION:
1. On the right, one out of four criteria met for chronic cerebral spinal venous insufficiency.
2. On the left, two out of four criteria met for chronic cerebral spinal venous insufficiency.


So, I still have some evidence of CCSVI... and I'm wondering what that means and what I should do now. Looks like my best source of info (for now) still might be TiMS, though they are supposed to send the images to Barrie, so I might eventually get some answers from Dr. McDonald, as well.
...Ted


Get a second opinion. I would be very interested to see if it differs from the impressions you listed from the Eastern Main medical center.
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Re: Symptoms

Postby Cece » Wed Jul 20, 2011 1:24 pm

fiddler wrote:Anyway, if someone knows of some metrics concerning what constitutes "bad" flow or how "bad" it should be before a person gets concerned, I'd like to hear about it.
...Ted

2 criteria out of 4 qualifies as CCSVI, so you qualify.

Euromedic has published data showing azygous issues were found in only 5% of MS patients. It's an area they may have been undertreating. (Although that does not mean you have it.)

Even with the stent, I would still expect that jugular to collapse when upright, everywhere but the stented area. Starling resistor....
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Second opinion

Postby fiddler » Wed Jul 20, 2011 2:03 pm

Hi scorpion,
I'm hoping for a second opinion from the folks at Barrie, though since this preliminary report didn't give details of how much the "some" reflux I have matters, I hesitate to call it a first opinion. Also, unfortunately, anybody qualified to give a second opinion is a long ways away from here, so it's not something I would do without forethought. As it is, my improvements are holding, so I'm not in a rush to get second opinions.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Perspective

Postby fiddler » Wed Jul 20, 2011 2:06 pm

Hi Cece,
Amazing how a change in perspective can change things... before I was liberated, I very much wanted to "qualify" for CCSVI and was so happy to receive that diagnosis in Katowice. Now, not so much... :?
..Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Cece » Wed Jul 20, 2011 2:18 pm

This might be relevant...
Ann Neurol. 2011 Jan;69(1):90-9. doi: 10.1002/ana.22228.
No evidence of chronic cerebrospinal venous insufficiency at multiple sclerosis onset.
Baracchini C, Perini P, Calabrese M, Causin F, Rinaldi F, Gallo P.
SourceFirst Neurology Clinic, University Hospital, Padova, Italy. claudiobaracchini@tin.it

Abstract
OBJECTIVE: An impaired cerebrospinal venous drainage, defined as chronic cerebrospinal venous insufficiency (CCSVI), has been recently hypothesized to be the possible cause of multiple sclerosis (MS). We investigated this hypothesis by studying the occurrence of CCSVI in clinically isolated syndromes (CISs) suggestive of MS.

METHODS: Fifty consecutive patients presenting with a CIS and evidence of dissemination in space of the inflammatory lesions (ie, possible MS [pMS]) underwent a detailed diagnostic workup, including extracranial and transcranial venous echo-color Doppler sonography (ECDS-TCDS). Those with CCSVI underwent selective venography. Fifty healthy subjects (HCs) age-matched and gender-matched with pMS patients (HC1); 60 patients with transient global amnesia (TGA); and 60 healthy subjects age-matched and gender-matched with TGA patients (HC2) constituted the control groups and underwent ECDS-TCDS.

RESULTS: Mean age of pMS patients was 33.0 ± 8.5 years (range, 14-50); 35 (70%) were female (female:male ratio, 2.3). TCDS was normal in all pMS patients. One or more abnormal ECDS findings were observed in 26 of 50 (52.0%) pMS patients, in 35 of 110 (31·8%) HCs (HC1+HC2), and in 41 of 60 (68.3%) TGA patients. Eight (16%) pMS patients fulfilled the diagnosis of CCSVI. Selective phlebography performed in 7 of these patients (1 denied consent) did not show venous anomalies.

INTERPRETATION: Our findings do not support a cause-effect relationship between CCSVI and pMS. Further studies are warranted to clarify whether CCSVI is associated with later disease stages and characterizes the progressive forms of MS.

People with transient global amnesia have either one or both jugular valves dysfunctionally allowing blood flow to go both ways. After CCSVI treatment, this is often the case for us as well.

So we might show criteria of reflux on the exam but it's no longer reflux caused by CCSVI which would mean it's not in need of further treatment. More research would clarify the value of the Zamboni protocol ultrasound used after the CCSVI procedure.

I would pay more attention to symptom improvement and any worsening and it sounds like you are doing well in that regard!
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