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CureOrBust wrote:

drsclafani wrote:if it were financially possible, I would repeat venography on every patient at six months just to find those who restenose and treat them again early

In your opinion, would you hold the same recommendation for someone who saw no improvements during or after your first treatment?

To answer your question as a patient treated by me, I would definitely repeat venography, probably sooner, if financials were not an obstacle, and this treatment were accepted and reimbursable by insurers. I feel very confident about my technical success but accept that i am not infallible and I would like to take a second look if there were no improvements

dc10 wrote:Hi Dr S,
I have had balloon angioplasty three times:
08/2010: both IJVs
12/2010: both IJVs again and Azygos vein
05/2011: both IJVs and Aygos vein

This year i had a novel stem cells with balloon angio treatment.
The IR only saw stenosis in my left IJV but they don't use IVUS, unfortunately.
Please see this short youtube video of my MRV.



I appreciate the 2D imaging is poor for evaluating MRVs but do you feel there is no stenosis in my right IJV and azygos?

Do you feel having balloon angio 3 times in the IJVs and 2 times in the Azygos can permanently keep a vein dilated?

Have you seen permanent dilation in IJVs and Azygos veins from multiple balloon angioplasties alone?

Thank you Doctor

That rightr side looks pretty good on venography. However I have seen many patients with normal looking veins on venogram that had some abnormality on IVUS. That is not to say that I have not seen long standing dilatation . I am hesitant to call it permanent since it may restenosis at five or ten years. But many patients have persistent dilatation for several years.

SophieandElle wrote:Hi Dr. S,

What does it mean if your IR says that your IJV narrowing is too dangerous to mess with? Mine is right at C1. I am a bit disappointed hearing this after the test. Do you ever find them too dangerous to try to fix?

sorry sophieandelle
I missed your question

I do not know what that particular statement means, not to say that there are not some narrowings that are high risk. But risk does not negate the treatment per se. It is often an analysis of risk versus benefit

generally the narrowings at C1 are due to bony or muscular compression. Using IVUS I find that many of them open up by flexing or extending or rotating the neck That is not to say that the narrowing is not significant, it is just to say that it is not a narrowing intrinsic the the vein itself. Extrinsic narrowings by muscle are not easily eradicated by angioplasty and often require stenting or surgery to open up. I only know of anecdotal information about these treatments. So I cannot make a definitive comment about treatment of C1 lesions

To answer your question as a patient treated by me, I would definitely repeat venography, probably sooner, if financials were not an obstacle, and this treatment were accepted and reimbursable by insurers. I feel very confident about my technical success but accept that i am not infallible and I would like to take a second look if there were no improvements

Finance is one thing, but expectations is another one doc.
You treated me oct 2012, some improvements in tremors that faded following months.
You cannot promise more improvements and maybe there are other causes.

One the other hand; if you lived next door..

I'm still glad i did it....although i'm worse physically, mentally still going strong, still working 40 Horus a week. Treatng the jugs helps, i'm sure!

Robnl wrote:

To answer your question as a patient treated by me, I would definitely repeat venography, probably sooner, if financials were not an obstacle, and this treatment were accepted and reimbursable by insurers. I feel very confident about my technical success but accept that i am not infallible and I would like to take a second look if there were no improvements

Finance is one thing, but expectations is another one doc.
You treated me oct 2012, some improvements in tremors that faded following months.
You cannot promise more improvements and maybe there are other causes.

One the other hand; if you lived next door..

I'm still glad i did it....although i'm worse physically, mentally still going strong, still working 40 Horus a week. Treatng the jugs helps, i'm sure!

yes, sorry i could not do more for you. I didnt mean to suggest trying over and over again

but your situation is different that the one i was discussing.

I understand doc, so many different people and situations

drsclafani wrote:
That right side looks pretty good on venography. However I have seen many patients with normal looking veins on venogram that had some abnormality on IVUS. That is not to say that I have not seen long standing dilatation . I am hesitant to call it permanent since it may restenosis at five or ten years. But many patients have persistent dilatation for several years.

Thank you Dr for looking, i hope the right side is and remains dilated,

do you have any thoughts on my azygus vein?

have you seen weakness in one side of the patients body (leg/arm) to be consistent with the side of the IJVs stenosis' ?
i ask because ever since my MS diagnosis days my left leg has always been significantly weaker than the right, however over the last 2 years, the right side (leg and arm) is now weaker than the left.


what does it mean when the dye seems to go from filling the vein going down to then spray outwards?
i see this in both IJVs and especially the azygus.
Its like the dye seeps out of the vein once it goes beyond a certain point

drsclafani wrote:

CureOrBust wrote:

drsclafani wrote:if it were financially possible, I would repeat venography on every patient at six months just to find those who restenose and treat them again early

In your opinion, would you hold the same recommendation for someone who saw no improvements during or after your first treatment?

To answer your question as a patient treated by me, I would definitely repeat venography, probably sooner, if financials were not an obstacle, and this treatment were accepted and reimbursable by insurers. I feel very confident about my technical success but accept that i am not infallible and I would like to take a second look if there were no improvements

I will switch to direct email, to discuss this matter further.

However, the gist I got from your response is that there was something possibly missed; I am of course thinking that CCSVI is simply not the major cause of my MS. Have you had previous cases of non response from the first, and different treatment on a second attempt with a corresponding response? may I ask if you remember what was treated the second time but not the first in that/one case (I understand it is a totally different case to mine)? I can understand the case of fading improvements returning on a second treatment, but I had no response from the first, but a number of treatment sites found to your "excitement".

Do the instances of fading improvements possibly indicate a case for more stenting? I have heard a few rumblings about new venous stents or non-metallic stents. Are there cases of single treatment that have maintained improvements without stenting? Is it better to simply retreat than stent? Is it different with different types of stenoses?

SophieandElle wrote:Hi Dr. S,

What does it mean if your IR says that your IJV narrowing is too dangerous to mess with? Mine is right at C1. I am a bit disappointed hearing this after the test. Do you ever find them too dangerous to try to fix?

Dear Sophieandelle
sorry about that. I had answered this question but it appears never to have been transmitted. Thanks to cece for bumping it up

Of course, I cannot speak for your IR. C1 lesions are uncommon compared to lesions located at the base of the jugular vein as it enters the chest, the so-called "J-1 segment. When C1 (The J-3 segment) lesions are present they are almost always associated with lesions elsewhere, such as in the Azygos vein or in the J1 segment.

J-3 lesions are usually caused by compression between the vertebra and tendons. they are often transient, meaning that there is some expansion in certain neck positions. For example the vein might open up on internal or external rotation of the neck or by flexion and extension of the neck. Their significance is unclear because there are no papers on this area and some of my patients get clinical improvements by opening up the "fixed" stenoses in the J1 segment.

These lesions are considered challenging by some and dangerous to others. Because this is an extreminsic compression, angioplasty may have little long term impact on the narrowing, thus requiring stenting to overcome the compressive forces. Also the compressive forces are strong and may result in kinking of the stent or fracture of the stent or intimal hyperplasia. The area of stenting also contains closely proximate nerves that can result in long term pain or damage to the cranial nerves. . Finally, the J3 segment of the vein is usually much smaller than the J2 (middle part of the vein) or J1. Thus, if the stent slips out of position, it can migrate out of the jugular vein.

I find decisions about treating these J3 lesions to be very difficult. Risks are present, clinical improvements are unclear or unsubstantiated, especially when the outcomes are comfounded by treatment of other lesions.

Here is an example of a normal J3


Here is an example of a narrowed J3 associated with J1 segment valve stenosis. Treatment of valve stenosis only withimporovements


Here is an example of a compressed J3 stent


Here is an example of a compressed J3 stent (placed by another IR) with secondary intimal hyperplasia


Here is a J3 stent with in-stent stenosis


My takehome messages to you are:
1. J-3 stenosis are rarely isolated. They are usually associated with valvular stenosis
2. treatment of valvular stenosis may make improvements. This is especially tru if the IJV on the other side is also highly stenotic
3. J3 segment lesions frequently require stents, which have some complications
4. Make sure that you get a very thorough venogram with IVUS to best evaluate what you have and to optimize your treatment plan.

Hope that this helps you

DrSclafani

Thekla wrote:Do the instances of fading improvements possibly indicate a case for more stenting? I have heard a few rumblings about new venous stents or non-metallic stents. Are there cases of single treatment that have maintained improvements without stenting? Is it better to simply retreat than stent? Is it different with different types of stenoses?

Fading improvements may represent re-stenosis, inadequate angioplasty, missed stenoses or progression of your disease

Stents are in my opinion are appropriate for stenoses resistant to optimized angioplasty, multple recurrent restenosis, especially over a short time, and salvage of angioplasty such as dissection or thrombosis

Yes there are patients whose angioplasties have held well for as long as 5-6 years
If the positive effects of anioplasty lasted a long time, then I would do what has worked before.

There are some investigational stents that may have superiority but nothing is proven to my knowledge.

Hope this helpsyou

DrS

Dr. Sclafani
It peaked my interest when I heard about exploring other veins...especially the Iliac. I know I'm not a doctor or anything but all of my physiotherapy and acupuncture and chiropractic have always been central around my illio Zoas .....sorry I don't know how to spell it. I haven't had Botox in a few years but that was the next muscle they were going to inject. I opted not to as I felt like the Botox was geared towards someone already non ambulatory and not wanting to twitch anymore. I want to walk!! I for some gut reason feel that that may be a troublesome area for me. Are you willing to explore a little further to help me along my way? Does any of that make sense? All my pressure and pain is cause from muscle spasms on my right side in that Iliac area(this has also gave me a severe lumbar scoliosis)Also I think I had some valve trouble and was wondering if that was something that would always be like that or is it repairable. Thank you again for your time.

Mato wrote:Dr. Sclafani
It peaked my interest when I heard about exploring other veins...especially the Iliac. I know I'm not a doctor or anything but all of my physiotherapy and acupuncture and chiropractic have always been central around my illio Zoas .....sorry I don't know how to spell it. I haven't had Botox in a few years but that was the next muscle they were going to inject. I opted not to as I felt like the Botox was geared towards someone already non ambulatory and not wanting to twitch anymore. I want to walk!! I for some gut reason feel that that may be a troublesome area for me. Are you willing to explore a little further to help me along my way? Does any of that make sense? All my pressure and pain is cause from muscle spasms on my right side in that Iliac area(this has also gave me a severe lumbar scoliosis)Also I think I had some valve trouble and was wondering if that was something that would always be like that or is it repairable. Thank you again for your time.

Dear Mato,
Thank you for posting your question here. As you recall, I answered you when you emailed me privately and I am glad that you were willing to post this on TIMS as requested because your question is one I have heard many times and because this confusion may lead to disappointment, mistrust and skepticism about the treatment results. I thought it was worthwhile to review it here as well.

Your expressed expectation that your iliopsoas muscle spasticity may be the direct result of iliac vein abnormalities. In other words, is there a correlation between the side and location of the venous problem and the side and location of the neurological problem. For example, you speak about spasticity in the iliopsoas muscles. This spasticity results in backpain, scoliosis, weakness in the hip flexor muscles.

Spasticity is a component of the upper motor neuron syndrome resulting from damage to the upper motor neurons of the brain and spinal cord. The other components include weakness, decreased speed fine movement and dexterity, facidity or stiffness, decreased endurance, muscle pains and clonus. Spasticity is essentially a reflex that has gone awry, losing its natural excitation/inhibition balance. It results in excessive contraction of one muscle group and excess relaxation of the opposite muscle group. For example, a hyperactivity of the of the plantar flexor muscles of the ankle, and weakness of the dorsiflexor muscles of the ankle. This leads to a spastic foot drop.

You must understand that the spasticity in not caused by these venous abnormalies directly, but spasticity is caused by the damage to the motor neurons of the spine or brain.

In this forum we have discussed many times the influence of extra-cerebrospinal veins in CCSVI. To review, there are veins (the left iliac, the left renal, the brachiocephalic veins) that are commonly compressed or obstructed by other blood vessels or bones. The resultant redirection of their flow INTO the cerebrospinal venous circulation can augment the venous congestion in the spine and brain. Abnormalities of these veins may exacerbate CCSVI. The cerebrospinal venous abnormality may cause or may influence the expression of the neurological damage but the left iliac vein does not appear to be directly causing any of these symptoms. It is important to understand that symptoms of MS are caused by and correlate with the location of the damage to the brain and spine. What ever way the venous abnormalities are influencing or causing neurological disease, it is the brain damage that directs the expression of symptoms.

http://isnvd.org/d/sites/default/files/ ... 0-2014.pdf

Election Results:

At this time, The ISNVD Executive Committee would like to announce the results of our fall 2014 election results for board members. A big congratulation goes out to the following people:

President Elect: Dr. Salvatore Sclafani
Vice-President: Dr. Steve Alexander
Annual Meeting Planning Committee Board Seat: Dr. Noam Alperin
Public Relations Committee Board Seat: Ms. Carol Schumacher
Safety Committee Board Seat: Dr. Adnan Siddiqui

We would like to welcome these members into their new roles within The ISNVD and will do our upmost to support their valuable
efforts.

The ISNVD Executive Committee is grateful to these Members for volunteering their efforts and time to such a worthy cause.
The Committee also would like to thank the Membership for your efforts in voting.

I notice some familiar names there...

Does this mean we will be addressing Sal as Mr President from now on?