This Is MS Multiple Sclerosis Knowledge & Support Community

Cece wrote:

drsclafani wrote:This may very well be another case of CCSVI in a patient without MS. As such cases accumulate, evidence will mount that CCSVI is its own entity. Improvement of her symptoms may allow us to define symptoms that are specific to CCSVI.

Will you publish or present on these cases of CCSVI in patients without MS? Your conclusions seem important.

I wrote up the first case study but i was waiting for more validation to have something more credible to publish. Let's see how this patient's evaluations are by those to whom i referred her.

some thoughts...

I performed left renal and ovarian venography and IVUS. This is best approached from the right jugular vein going down through the right atrium into the left renal vein. However, because of my suspicion of CCSVI, I chose to access the venous circulation through the right saphenofemoral junction. A bit of a challenge.

You did not want to puncture the jugular, because puncture of the jugular could result in vein injury. Makes sense. I am waiting to see if the CCSVI discovery as it unfolds will affect the use of the jugular vein in other procedures. Dialysis, for example. If the jugular vein is valued more highly, it becomes a last-resort vein when used in ways that may injure it.



Beautiful outcome in image d.

Is renal vein compression something the patient had always had, or could it have been more recently acquired? The pelvic congestion syndrome can be acquired as the the flow from the compressed renal vein damages the pelvic vein valves. The jugular valve was likely congenital, if the phlebologists' consensus is correct. How long had the patient been having CCSVI symptoms?

drsclafani wrote:I wrote up the first case study but i was waiting for more validation to have something more credible to publish. Let's see how this patient's evaluations are by those to whom i referred her.

It lends more support to the theory of CCSVI as a separate entity if the neurologist does not diagnose her with MS.

I wonder if after being treated for CCSVI, a patient would be less likely to be newly diagnosed with MS (since some CCSVI symptoms are misidentified as MS symptoms and since CCSVI treatment can sometimes seem to have an ameliorative effect on MS.)

Cece wrote:

drsclafani wrote:I wrote up the first case study but i was waiting for more validation to have something more credible to publish. Let's see how this patient's evaluations are by those to whom i referred her.

It lends more support to the theory of CCSVI as a separate entity if the neurologist does not diagnose her with MS.

I wonder if after being treated for CCSVI, a patient would be less likely to be newly diagnosed with MS (since some CCSVI symptoms are misidentified as MS symptoms and since CCSVI treatment can sometimes seem to have an ameliorative effect on MS.)

it is very unlikely that anyone could diagnose MS in her since she hasnt any attacks, and her neurological deficits are minor, numbness to vibratory sensations along the lateral aspect of the left calf. The diagnosis of MS requires two separate witnessed events lasting more than 24 hours (dissemination in time) and two different neurological manifestations indicating different parts of the brain and spine. (dissemination in place) and many other diseases need to be excluded.

Cece wrote:some thoughts...

I performed left renal and ovarian venography and IVUS. This is best approached from the right jugular vein going down through the right atrium into the left renal vein. However, because of my suspicion of CCSVI, I chose to access the venous circulation through the right saphenofemoral junction. A bit of a challenge.

You did not want to puncture the jugular, because puncture of the jugular could result in vein injury. Makes sense. I am waiting to see if the CCSVI discovery as it unfolds will affect the use of the jugular vein in other procedures. Dialysis, for example. If the jugular vein is valued more highly, it becomes a last-resort vein when used in ways that may injure it.



Beautiful outcome in image d.

Is renal vein compression something the patient had always had, or could it have been more recently acquired? The pelvic congestion syndrome can be acquired as the the flow from the compressed renal vein damages the pelvic vein valves. The jugular valve was likely congenital, if the phlebologists' consensus is correct. How long had the patient been having CCSVI symptoms?

headaches extending into the back of the neck since adolescence. Fatigure since age 13

Nutcracker is usually an anatomical problem. It is commonly seen in very thin people and could theoretically develop if someone lost a great deal of weight. I sort of doubt it

Interesting to hear the dx of MS come up.
I have had mine 'changed' by a Neurologist. They are now doubtful of me having PPMS as previously stated because my main issue a lesion at C2 has not been seen after 3 years, the other brain lesions are stable and 'unchanged'.
No talk that I might be onto something with diet, exercise and mindfulness (George Jelinek) which is documented as changing the course of something called MS!
In Dr.s' example above, if the text books are correct the first incident is still recorded as CSI, and that also would define TM as a dx because of the clinical findings.
So this once again comes back to name calling, or Bullying people into boxes because there hasn't been any time spent on the big picture of 'cause'.
If the testing was now changed to vascular involvement it would be a collection of the sub groups, CCSVI, MS, TM, ALS, Chron's, Parkinsons. IBT, and so on.

Hope there are some Neurologists lurking!

Regards,
Nigel

it is very unlikely that anyone could diagnose MS in her since she hasnt any attacks, and her neurological deficits are minor, numbness to vibratory sensations along the lateral aspect of the left calf. The diagnosis of MS requires two separate witnessed events lasting more than 24 hours (dissemination in time) and two different neurological manifestations indicating different parts of the brain and spine. (dissemination in place) and many other diseases need to be excluded.

Well, i can only speak for myself, but when i was diagnosed it was 'barely' MS; 7 minor lesions in the brain and a few in the spine....diagnosis: probable PPMS (no attacks). main complaints then were the eye (slow nerve response during tests) and legs that became less sensitive and less control.

After 5 years the neuro wrote down that it is PPMS (well, after i kept asking for a final conclusion )

All i want to say is that for me MS diagnosis is just a 'if other diseases dont match; than it must be MS'. I think a lot of MS cases are not MS.

rgds,

Robert

Dr Sclafani, I now have an occluded azygos vein after having it ballooned for the first time last year. I was just wondering what are the implications of having an occluded azygos vein? Is it a really bad thing or will my body compensate the azygos flow elsewhere? Will it ever fix itself? Any info would be much appreciated.

Sake

drsclafani wrote:i am working on a very interesting vignette right now. I hope to have it finished some time this week

i am calllng it "Paradise lost, paradise regained". It will begin a discussion of early regression of clinical gains after ccsvi treatment

hmmm still working on this?
I am more than ok with more than one case study per week.

drsclafani wrote:I will be going to the wilderness of northern new york state for a week soon. Given the number of questions, i dont think i will be missed too much.

I think Sake's question serves pretty well as a response to this.
Quality not quantity of questions.
Quality and quantity of case studies....

Sake, sorry to hear about the occluded azygous. Did you have a venogram that confirmed or found the occlusion?

Hi Cece, thanks for your post I had a venogram yesterday that found and confirmed the occlusion. Interestingly enough the surgeon said to me that if I was anyone else he would say don't worry about it there's plenty of other veins for the blood to find its way through but considering I have MS he didn't know if this same theory applies.. Which leads me to the questions I have for Dr Sclafani.

Sake wrote:Dr Sclafani, I now have an occluded azygos vein after having it ballooned for the first time last year. I was just wondering what are the implications of having an occluded azygos vein? Is it a really bad thing or will my body compensate the azygos flow elsewhere? Will it ever fix itself? Any info would be much appreciated.

Sake

Sorry for your complication.
Most occlusions remain occluded although some do recanalize where the blood clot dissolves and flow returns. If that hasn't happened in a year its not going to get better in the future. I think some occlusions lead to long term worsening of symptoms. Others are silent.

Sake wrote:Hi Cece, thanks for your post I had a venogram yesterday that found and confirmed the occlusion. Interestingly enough the surgeon said to me that if I was anyone else he would say don't worry about it there's plenty of other veins for the blood to find its way through but considering I have MS he didn't know if this same theory applies.. Which leads me to the questions I have for Dr Sclafani.

Sake, a question for you.
After your first treatment did you have symptomatic improvements? Have the persisted? Did they disapppear
I am trying to learn what effect occlusion had on you

http://radiographics.rsna.org/content/11/2/233.full.pdf

Absence of the Azygos Vein
Congenital absence of the azygos vein is rare, with only two cases reported in the radiologic literature (9, 10). CT may demonstrate absence of the azygos vein, with consequent enlargement of the hemiazygos, accessory hemiazygos, and left superior intercostal veins.

An occlusion is not a congenital absence, but these might be the veins that could serve as collaterals for an occluded azygous.

Dr. Sclafani asks about symptoms, and I think there must've been some reason to get that venogram this week, and I wonder if anything was found that was treatable or if it was just the occluded azygous that was found?

A lot of IRs don't investigate the renal vein, and that also comes to mind, because if the renal vein happened to be blocked it would be diverting a lot of flow into a system already overtaxed by the loss of the azygous.

Interestingly enough the surgeon said to me that if I was anyone else he would say don't worry about it there's plenty of other veins for the blood to find its way through but considering I have MS he didn't know if this same theory applies..

That's somewhat reassuring and somewhat not!

Thanks for your response Dr Sclafani, when my azygos was first treated I had large improvements, in saying this my right IJV was also ballooned, this was in August last year, I had been fine for the year up until the last month. I had a Doppler indicating restenosis of my right IJV and it wasn't until yesterday that I found out that the azygos had occluded. I wouldn't even be too sure regarding how long it's been like that. My recent symptoms already seem to be improving from yesterday's ballooning of the right IJV.

Do you believe occlusion is being caused by a blood clot in most cases or scarring of the vein? I also would love to know your thoughts on using drug eluting balloons if scarring may be the cause of restenosis and/or occlusions? Do you think they have any benefit?

Thanks for your time, it is very much appreciated.

Sake

Cece wrote:http://radiographics.rsna.org/content/11/2/233.full.pdf

Absence of the Azygos Vein
Congenital absence of the azygos vein is rare, with only two cases reported in the radiologic literature (9, 10). CT may demonstrate absence of the azygos vein, with consequent enlargement of the hemiazygos, accessory hemiazygos, and left superior intercostal veins.

An occlusion is not a congenital absence, but these might be the veins that could serve as collaterals for an occluded azygous.

Dr. Sclafani asks about symptoms, and I think there must've been some reason to get that venogram this week, and I wonder if anything was found that was treatable or if it was just the occluded azygous that was found?

A lot of IRs don't investigate the renal vein, and that also comes to mind, because if the renal vein happened to be blocked it would be diverting a lot of flow into a system already overtaxed by the loss of the azygous.

Interestingly enough the surgeon said to me that if I was anyone else he would say don't worry about it there's plenty of other veins for the blood to find its way through but considering I have MS he didn't know if this same theory applies..

That's somewhat reassuring and somewhat not!

Hi Cece, this is the first I'm hearing about the renal vein, I'd have to look into it to find out some info.. Is it common that people are finding blockages there? If so is it safe to balloon?

Interesting that you wrote about the hemiazygos and accessory hemiazygos, I would really hope that they're taking the load from the azygos, unfortunately he wasn't able to confirm with me whether they were. Thanks so much for your info and time Cece.