DrSclafani answers some questions

[Cece]

Dr. Siddiqui used IVUS during the PREMise trial, and a new article just came out from them. From their results:
http://www.biomedcentral.com/1471-2377/13/151/abstract

The sensitivity between the two invasive imaging techniques, used as benchmarks, ranged from 72.7% for the right IJV to 90% for the azygos vein but the IVUS showed a higher rate of venous anomalies than the CV.

IVUS showed a higher rate of venous anomalies than the catheter venography.

[dlynn]

Dr. Sclafani,
1. Do you find new problems in the veins of (your new) patients who've had the CCSVI procedure in the past,
2. And if so , what are they?
3. Do you check your patients previous procedures, such as stents and coils if they would decide to have the CCSVI
procedure.
4. Since the last conference in Canada, are any of the techniques being looked at differently to treat CCSVI.

I do have other questions re. renal stents and coils (that might benefit someone with similar problems)Would it be appropriate to ask you here?

Thank you

[drsclafani]

Dr. Sclafani,
1. Do you find new problems in the veins of (your new) patients who've had the CCSVI procedure in the past,
2. And if so , what are they?
3. Do you check your patients previous procedures, such as stents and coils if they would decide to have the CCSVI
procedure.
4. Since the last conference in Canada, are any of the techniques being looked at differently to treat CCSVI.

I do have other questions re. renal stents and coils (that might benefit someone with similar problems)Would it be appropriate to ask you here?

Thank you

1. i frequently find unrecognized problems in patients who have undergone treatment in the past by others.
2. missed valvular stenoses are the most common, nutcracker syndrome is another, high jugular stenoses that were not part of the prior venography,
3. i try to see the images from prior procedures for ccsvi, some patients do not have copies and sometimes i cannot load their disks. It is very helpful to have a sense of what was done. I learn a lot from what was not done the first time.
4. I didnt think that there was much discussion of new techniques. I worry that I am getting satisfied with my technique now!

I think that renal vein compression is a very important topic for ccsvi. It is grossly understood and underestimated. most IRs do not look for this. That it can cause spinal symptoms was described more than forty years ago but the entire idea is foreign to most. I encourage you to ask questions in this forum about this topic.

[tzootsi]

Dr. Sclafani,
1. Do you find new problems in the veins of (your new) patients who've had the CCSVI procedure in the past,
2. And if so , what are they?
3. Do you check your patients previous procedures, such as stents and coils if they would decide to have the CCSVI
procedure.
4. Since the last conference in Canada, are any of the techniques being looked at differently to treat CCSVI.

I do have other questions re. renal stents and coils (that might benefit someone with similar problems)Would it be appropriate to ask you here?

Thank you

1. i frequently find unrecognized problems in patients who have undergone treatment in the past by others.
2. missed valvular stenoses are the most common, nutcracker syndrome is another, high jugular stenoses that were not part of the prior venography,
3. i try to see the images from prior procedures for ccsvi, some patients do not have copies and sometimes i cannot load their disks. It is very helpful to have a sense of what was done. I learn a lot from what was not done the first time.
4. I didnt think that there was much discussion of new techniques. I worry that I am getting satisfied with my technique now!

I think that renal vein compression is a very important topic for ccsvi. It is grossly understood and underestimated. most IRs do not look for this. That it can cause spinal symptoms was described more than forty years ago but the entire idea is foreign to most. I encourage you to ask questions in this forum about this topic.

Very interesting. Are you finding better outcomes compared to the 'early days' of CCSVI treatment?
Are the redo's in particular finding symptom improvement?

[drsclafani]

Dr. Sclafani,
1. Do you find new problems in the veins of (your new) patients who've had the CCSVI procedure in the past,
2. And if so , what are they?
3. Do you check your patients previous procedures, such as stents and coils if they would decide to have the CCSVI
procedure.
4. Since the last conference in Canada, are any of the techniques being looked at differently to treat CCSVI.

I do have other questions re. renal stents and coils (that might benefit someone with similar problems)Would it be appropriate to ask you here?

Thank you

1. i frequently find unrecognized problems in patients who have undergone treatment in the past by others.
2. missed valvular stenoses are the most common, nutcracker syndrome is another, high jugular stenoses that were not part of the prior venography,
3. i try to see the images from prior procedures for ccsvi, some patients do not have copies and sometimes i cannot load their disks. It is very helpful to have a sense of what was done. I learn a lot from what was not done the first time.
4. I didnt think that there was much discussion of new techniques. I worry that I am getting satisfied with my technique now!

I think that renal vein compression is a very important topic for ccsvi. It is grossly understood and underestimated. most IRs do not look for this. That it can cause spinal symptoms was described more than forty years ago but the entire idea is foreign to most. I encourage you to ask questions in this forum about this topic.

Very interesting. Are you finding better outcomes compared to the 'early days' of CCSVI treatment?
Are the redo's in particular finding symptom improvement?

I still cannot predict which patients will improve. I have noted some rather wonderful improvements in patients who had improvements the first time that were short lived. Not all, but enough for me to continue treating those treated previously with disappointing outcomes
Experience helps me have some sense of what will improve, and in which patients. By no means perfect, but a general sense.
i think that results are getting better as I have learned how to push the angioplasty without over-doing the dilatation.
i think that results have been better because complications are detected earlier and treated faster. Sometimes this makes a real difference between no improvement and improvements.
i think that results are now better because many of the initial patients that I saw were really debilitated by the disease. I have come to accept that dead neurons remain dead. I am more at peace with symptoms that do not improve because of the severity of disease. I am more satisfied when such failure is associated with some clinical improvements.

[pelopidas]

1. i frequently find unrecognized problems in patients who have undergone treatment in the past by others.
2. missed valvular stenoses are the most common, nutcracker syndrome is another, high jugular stenoses that were not part of the prior venography,
3. i try to see the images from prior procedures for ccsvi, some patients do not have copies and sometimes i cannot load their disks. It is very helpful to have a sense of what was done. I learn a lot from what was not done the first time.
4. I didnt think that there was much discussion of new techniques. I worry that I am getting satisfied with my technique now!

I think that renal vein compression is a very important topic for ccsvi. It is grossly understood and underestimated. most IRs do not look for this. That it can cause spinal symptoms was described more than forty years ago but the entire idea is foreign to most. I encourage you to ask questions in this forum about this topic.

so, can you please describe what is the patient's profile and symptoms with renal vein compression?

[drsclafani]

1. i frequently find unrecognized problems in patients who have undergone treatment in the past by others.
2. missed valvular stenoses are the most common, nutcracker syndrome is another, high jugular stenoses that were not part of the prior venography,
3. i try to see the images from prior procedures for ccsvi, some patients do not have copies and sometimes i cannot load their disks. It is very helpful to have a sense of what was done. I learn a lot from what was not done the first time.
4. I didnt think that there was much discussion of new techniques. I worry that I am getting satisfied with my technique now!

I think that renal vein compression is a very important topic for ccsvi. It is grossly understood and underestimated. most IRs do not look for this. That it can cause spinal symptoms was described more than forty years ago but the entire idea is foreign to most. I encourage you to ask questions in this forum about this topic.

so, can you please describe what is the patient's profile and symptoms with renal vein compression?

There are several profiles of patients with renal compression (nutcracker)

1. no symptoms. 10-20% of humans have some degree of renal vein compression. The majority of them have no symptoms and renal vein compression is then called Nutcracker phenomenon.
2. symptoms related to renal vein compression in children: This is a common cause of chronic fatigue in childhood. These patients have symptoms of vascular congestion of the kidney manifested by protein in the urine and microscopic or gross hematuria. They may also have other symptoms listed below as seen in adults.
3. Symptoms related to reflux into the veins of the ovary or the testicle. In women this manifests as some of the following: chronic pelvic pain unrelated to menstrual cycle, pelvic floor fatigue and pain (especially on standing and relieved by lying down), frequent bouts of cystitis, hemorrhoids, rectal pain, varicose veins of the upper thigh and the external female genitalia. In men infertility with low sperm count and immobility of sperm, and varicose veins in the testicle are common.
4. Symptoms of the midline congestion syndrome described by Scholbach: a constellation of symptoms related to organs and structures that are located in the mid-line of the abdomen, including the spinal cord and vertebrae, the bowel, uterus, bladder, and genitalia. Symptoms include headaches (including migraine headaches), abdominal pain, back and flank pain, diarrhea, bloody bowel movements, painful sex, urinary pain and cystitis and rectal pain
5. In the 1970's Albouker reported on myelopathy resulting from renal vein compression. He stated that he found, among 60 patients treated for renal vein compression, that other venous obstructions, involving jugular, brachiocephalic, azygos and iliac veins were common. (sounds like CCSVI to me)

I contend that since jugular and azygos vein obstructions are so common in patients with MS, things are strongly affected by renal vein compression. When jugular veins are obstructed, epidural venous drainage provides an accessory collateral outflow draining into the superior vena cava through the azygos vein. When the azygos vein is also obstructed, azygos flow decompresses through the hemiazygo-left renal trunk into the renal vein and inferior vena cava. But if that renal vein is obstructed, it has a doubly negative effect. Not only is the collateral flow inhibited, but the flow from the renal vein is partially redirected INTO the hemiazygos vein back into the spine resulting in increased congestion of the spinal cord and worsening overload of the spinal circuits. The only remaining spinal vein is the ascending lumbar vein but we know that this vein is commonly hypoplastic in patients with MS. So that is not useful as a decompressing vein.

Scholbach thinks that congestion of the vertebral plexus of veins results in displacement of CSF upward and he suggests that resultant intracranial CSF overload can cause headaches. This may be compounded by the retardation of CSF outflow in the presence of jugular vein obstructions.

I must add that most IRs to do not focus on this at all.

[Cece]

I must add that most IRs to do not focus on this at all.

Have you prepared anything for publication on renal vein compression in CCSVI patients? It would be nice if it influenced other IRs.

[drsclafani]

I must add that most IRs to do not focus on this at all.

Have you prepared anything for publication on renal vein compression in CCSVI patients? It would be nice if it influenced other IRs.

preparing several documents for consideration
1. incidence of RVC in PwMS vs controls
2. IVUS in RVC
3. case reports
4. large case series

nothing completed yet

[Lety]

Letty, at the current time, I think there is insufficient data to offer a solid recommendation regarding muscle entrapment. I have read a few case reports and anecodatal information. But i havent seen great outcomess In my experience many of these compressions are transient, meaning that they are not persistent 100% of the time.

Perhaps I have missed some reports. Does anyone have more information other than a few case reports and very small series "zamboni, Simka".

Hello dr. Sclafani

Thank you for your answer, I don`t have case reports other than "zamboni, simka" http://www.ccsviitalia.org/7/post/2013/ ... bilia.html , but I know that dr. Pippo Cacciaguerra and dr. Pierfrancesco Veroux, Catania are study and treating this problem. Maybe you could contact these doctors and ask for concrete results ?
Your opinion is always important for me

I have made contact with Dr Cacciaguerra. But august is a difficult month and dr cacciaguerra was on vacation. he sent me some slides but there wasnt anything substantive on it.

i look forward to analyzing and critiqueing this concept.

Dear dr. Sclafani

how are you ?

do you have any News

Lety

i received a copy of their unpublished paper on the subject of omohyoid. unfortunately it is in italia which I do not read. I sent it on to a vascular surgical colleague who does read italian and am awaiting his review of their paper

lets try in another week

Dear dr. Sclafani

you have still not received an answer ?

[dlynn]

Dr. Sclafani,
Since my procedures this past Dec., I've been pain (flank and cramps) free approx. 9 mos.
Thank you so much, I'm truly grateful. Even my jaw became unclenched and is still unclenched and pain free.
But lately (past few weeks) I've noticed occasional flank pain and pelvic floor pain, not at the same time.
Pelvic floor and low back pain when lying down. But this is opposite of what you describe, I should have relief lying down.
1. Can it be that other pelvic veins have become problematic?
2. Could it be the coils that is causing pelvic floor pain?
3. If NCS causes PCS, will treating NCS only, cause the PCS to resolve?
4. What happens to these stents and coils after time?
5. Have you seen sibling cases of NCS with or without MS?
6. Is there a non-invasive way to check the stents and coils to make sure blood is still flowing or not flowing properly?
7. Re. the ascending lumbar vein, will you please explain "hypoplastic" and "decompressing vein"

thank you

[drsclafani]

Dr. Sclafani,
Since my procedures this past Dec., I've been pain (flank and cramps) free approx. 9 mos.
Thank you so much, I'm truly grateful. Even my jaw became unclenched and is still unclenched and pain free.
But lately (past few weeks) I've noticed occasional flank pain and pelvic floor pain, not at the same time.
Pelvic floor and low back pain when lying down. But this is opposite of what you describe, I should have relief lying down.
1. Can it be that other pelvic veins have become problematic?

THERE IS THE POSSIBLE that reflux down the ovarian vein continues despite correction of the renal vein compression. RVC leads to injury to the valves of the ovarian vein and if these do not function properly, then reflux can continue. Treatment would then necessitate embolization of the ovarian vein.

2. Could it be the coils that is causing pelvic floor pain?

TWO causes of pain could be thrombosis of dilated varicose veins of the pelvis or irritation caused by the coils if they were placed.

3. If NCS causes PCS, will treating NCS only, cause the PCS to resolve?

Possibly. it is also possible that embolization of the ovarian vein leading to reflux down into the pelvis may also be required

4. What happens to these stents and coils after time?

stents become covered with neointimal lining and effectively get incorporated into the wall of the vein or artery. Coils lead to thrombosis and the coils are embeded in the blood clot, which organizes and forms scar tissue

5. Have you seen sibling cases of NCS with or without MS?

I have never treated siblings who had NCS.

6. Is there a non-invasive way to check the stents and coils to make sure blood is still flowing or not flowing properly?

any flow through coils in not proper flow because coils should arrest flow. So seeing contrast media flowing through coils indicates ineffective occlusion. The only way to determine this accurately is with angiography.

there should be flow through the stent at all times. There are several ways to determine this. by ultrasound, CTA, MRA and angiography

7. Re. the ascending lumbar vein, will you please explain "hypoplastic" and "decompressing vein"

A hypoplastic vein is one that never grows to its usual potential in size.
A decompressing vein is a vein that provides an outflow that bypasses an obstructed vein.

thank you

Any time

[Lety]

Letty, at the current time, I think there is insufficient data to offer a solid recommendation regarding muscle entrapment. I have read a few case reports and anecodatal information. But i havent seen great outcomess In my experience many of these compressions are transient, meaning that they are not persistent 100% of the time.

Perhaps I have missed some reports. Does anyone have more information other than a few case reports and very small series "zamboni, Simka".

Hello dr. Sclafani

Thank you for your answer, I don`t have case reports other than "zamboni, simka" http://www.ccsviitalia.org/7/post/2013/ ... bilia.html , but I know that dr. Pippo Cacciaguerra and dr. Pierfrancesco Veroux, Catania are study and treating this problem. Maybe you could contact these doctors and ask for concrete results ?
Your opinion is always important for me

I have made contact with Dr Cacciaguerra. But august is a difficult month and dr cacciaguerra was on vacation. he sent me some slides but there wasnt anything substantive on it.

i look forward to analyzing and critiqueing this concept.

Dear dr. Sclafani

how are you ?

do you have any News

Lety

i received a copy of their unpublished paper on the subject of omohyoid. unfortunately it is in italia which I do not read. I sent it on to a vascular surgical colleague who does read italian and am awaiting his review of their paper

lets try in another week

Dear dr. Sclafani

you have still not received an answer ?

Sorry that I ask again but it is very important to know what do you think about it

Thank you

[pelopidas]

There are several profiles of patients with renal compression (nutcracker)

1. no symptoms. 10-20% of humans have some degree of renal vein compression. The majority of them have no symptoms and renal vein compression is then called Nutcracker phenomenon.
2. symptoms related to renal vein compression in children: This is a common cause of chronic fatigue in childhood. These patients have symptoms of vascular congestion of the kidney manifested by protein in the urine and microscopic or gross hematuria. They may also have other symptoms listed below as seen in adults.
3. Symptoms related to reflux into the veins of the ovary or the testicle. In women this manifests as some of the following: chronic pelvic pain unrelated to menstrual cycle, pelvic floor fatigue and pain (especially on standing and relieved by lying down), frequent bouts of cystitis, hemorrhoids, rectal pain, varicose veins of the upper thigh and the external female genitalia. In men infertility with low sperm count and immobility of sperm, and varicose veins in the testicle are common.
4. Symptoms of the midline congestion syndrome described by Scholbach: a constellation of symptoms related to organs and structures that are located in the mid-line of the abdomen, including the spinal cord and vertebrae, the bowel, uterus, bladder, and genitalia. Symptoms include headaches (including migraine headaches), abdominal pain, back and flank pain, diarrhea, bloody bowel movements, painful sex, urinary pain and cystitis and rectal pain
5. In the 1970's Albouker reported on myelopathy resulting from renal vein compression. He stated that he found, among 60 patients treated for renal vein compression, that other venous obstructions, involving jugular, brachiocephalic, azygos and iliac veins were common. (sounds like CCSVI to me)

I contend that since jugular and azygos vein obstructions are so common in patients with MS, things are strongly affected by renal vein compression. When jugular veins are obstructed, epidural venous drainage provides an accessory collateral outflow draining into the superior vena cava through the azygos vein. When the azygos vein is also obstructed, azygos flow decompresses through the hemiazygo-left renal trunk into the renal vein and inferior vena cava. But if that renal vein is obstructed, it has a doubly negative effect. Not only is the collateral flow inhibited, but the flow from the renal vein is partially redirected INTO the hemiazygos vein back into the spine resulting in increased congestion of the spinal cord and worsening overload of the spinal circuits. The only remaining spinal vein is the ascending lumbar vein but we know that this vein is commonly hypoplastic in patients with MS. So that is not useful as a decompressing vein.

Scholbach thinks that congestion of the vertebral plexus of veins results in displacement of CSF upward and he suggests that resultant intracranial CSF overload can cause headaches. This may be compounded by the retardation of CSF outflow in the presence of jugular vein obstructions.

I must add that most IRs to do not focus on this at all.

Let's think about the possible scenario of an adult, 55 yo, a relative of mine, never suffered from MS, but suddenly appears to have an Acute Cerebrospinal Venous Insufficiency (?)
If this patient undergoes a venography, should we expect first a Nutcracker phenomenon and an asymptomatic azygos blocked?
Then somehow the jugulars were blocked by an accident?

I know it sounds impossible, but this healthy person for a lifetime, suddenly suffers from cerebrospinal venous insufficiency

[erinc14]

I've had stents for almost 3 years . is there still a risk of migration ? thanks .