DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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cheerleader
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Re: DrSclafani answers some questions

Post by cheerleader »

pukai wrote:
The information I found here - that's what I can say for sure today - has changed my life as someone being at first diagnosed with a "mild" form of RRMS in 1997, which started to suddenly deteriorate since 2009.
With "Cheerleader' s" first notes from the Bologna meeting, which I found during a midnight internet search after having lost eyesight on one side within four days, and her text "Just the facts Ma'm", a difficult journey started.

But today, I am convinced that the veins described in CCSVI, Nutcracker syndrome and probably May-Thurner syndrome belong together as central areas of the venous system with impact on several disabilities connected to the nervous system. They should be examined and treated, if necessary, alltogether. For each patient, time is of the essence.
Thank you again all you TIMS - posters, but especially thanks to Dr. Sclafani and Joan Beal for your uncomparable dedication.

-Marcus
Marcus--reading your post just gave me and Jeff another shot of inspiration. We get discouraged with the manufactured controversy, and sometimes want to just move on and forget it all. But we know the reality of Jeff's improvements as shown on MRI. He now has normal gray matter, and a normal third ventricle. He's jogging, skiing, working more than full time once again, with no MS progression. May your gains continue, too. Thanks to Dr. Sclafani for becoming an expert in this new field of venous function. Thanks to all those who continue to pursue understanding.
cheer/Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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drsclafani
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Re: DrSclafani answers some questions

Post by drsclafani »

dlynn wrote:Dr Sclafani,
Yes, I do mean stent.
"There is no self expanding balloon. Do you mean self expanding stent?"

And also if there is any pain in the same location as previous to stenting the LRV, does that mean there is
problems again with PCS or the LRV or both? I sometimes get pain, not chronic as in the past, but this
concerns me. What are your thoughts on this? It's been nearly two years since the procedures (12-12)
Thank you
Occasional pain in the region of the stent is likely not problematic. I would be more concerned with the status of your symptoms rather than any pain.

Medicolegally, it is difficult for me to interact with one of my patients in this manner. While I think it is helpful for all the patients who are involved in this forum to read about such things, if you think there is a real problem or if you want to evaluate this further, it would be best to do it throught ccsviliberation@gmail.com

thanks for sharing here, tho
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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pukai
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Re: DrSclafani answers some questions

Post by pukai »

1eye wrote:Thank you, Marcus. You have succeeded as well as today's medicine can, and I hope you have very long-lasting results. The description of the problem with misdirected kidney drainage is very informative.

Keep up the jogging!

And thank you, too, Dr. Sclafani.
Hello 1eye,
i will try to give more information about kidney drainage and Nutcracker syndrome with some downloadable essays in my second post. I hope you will like it, too. And yes, I 'm still trying to push the distance of my running attempts further on!
Thank you very much!

-Marcus
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Re: DrSclafani answers some questions

Post by pukai »

cheerleader wrote:
pukai wrote:
The information I found here - that's what I can say for sure today - has changed my life as someone being at first diagnosed with a "mild" form of RRMS in 1997, which started to suddenly deteriorate since 2009.
With "Cheerleader' s" first notes from the Bologna meeting, which I found during a midnight internet search after having lost eyesight on one side within four days, and her text "Just the facts Ma'm", a difficult journey started.

But today, I am convinced that the veins described in CCSVI, Nutcracker syndrome and probably May-Thurner syndrome belong together as central areas of the venous system with impact on several disabilities connected to the nervous system. They should be examined and treated, if necessary, alltogether. For each patient, time is of the essence.
Thank you again all you TIMS - posters, but especially thanks to Dr. Sclafani and Joan Beal for your uncomparable dedication.

-Marcus
Marcus--reading your post just gave me and Jeff another shot of inspiration. We get discouraged with the manufactured controversy, and sometimes want to just move on and forget it all. But we know the reality of Jeff's improvements as shown on MRI. He now has normal gray matter, and a normal third ventricle. He's jogging, skiing, working more than full time once again, with no MS progression. May your gains continue, too. Thanks to Dr. Sclafani for becoming an expert in this new field of venous function. Thanks to all those who continue to pursue understanding.
cheer/Joan
Dear Joan,
thank you very much for replying so positively to my post. I' m very glad that your husband is doing well - it is difficult to "just move on and forget it all" when you are convinced of a (medical) idea not only theoretically, but also in a practical and emotional way, isn't it? Please go on commenting on new research in your blog; your way of informing about sometimes very complex connections is helpful in many ways -
-Marcus
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Re: DrSclafani answers some questions

Post by pukai »

Nutcracker Syndrome - CCSVI - Midline Congestion Syndrome - Venous Back Jets

As I already wrote in my first post Thursday last week, in 2013, during my first treatment of stenosed jugular vein valves on both sides in Brooklyn, a severe Nutcracker syndrome was diagnosed.
With IVUS, Dr. Sclafani found a compression of the left renal vein between the aorta and the superior mesenteric artery (SMA) which accounted for approximately 90% stenosis of the lumen. A pressure gradient of 6mm between the vena cava inferior and the area behind the compression close to the kidney (the hilar region) was measured - normally, there is no gradient at all (or a maximum of 1mm). As a consequence, instead of flowing into the vena cava inferior and then directly to the heart, there was reflux of left renal vein blood downwards into the gonadal vein and into the scrotum and upwards into the hemi-azygo-renal trunk and the hemiazygos vein.
Lacking a stent of sufficient dimensions to safely deploy it at that moment, I was offered the opportunity to return after the weekend for additional stenting of the left renal vein. But after thoroughly discussing this situation with my wife, who accompanied me, and Dr. Sclafani, I decided
to defer stenting until I saw the outcome of the angioplasty of jugular and azygos veins.

There were two main reasons for this decision:

Firstly, I had read about all the "main" areas (jugular and azygos veins) of the CCSVI treatment mentioned in the Zamboni studies, and I was prepared for some findings. I have to admit that I had not really addressed the Nutcracker subject at that time.
I had made the experience that getting adequate diagnosis and treatment of CCSVI in Germany was impossible. Being engaged in this field as someone with a MS-label had the characteristics of some kind of underground fight because of reasons far away from help for patients or the search for medical insight. And - of course - no way to get support from your medical insurance at all. Based on this background, for me, the decision to get treated by Dr. Sclafani -far away from home and "out of the pocket" - was the only logical one.

On the other hand, the condition described above as Nutcracker syndrome for me was clearly a vascular problem with indisputable pathological clinical symptoms even for somebody not diagnosed with MS: For example, reflux of blood into the gonadal vein and scrotum leads to painful varikozele and can impair fertility. Both of these symptoms had been part of my problems in the recent past without any of the doctors in charge even thinking of Nutcracker. Now, with Dr. Sclafani's gold-standard diagnosis, I thought that it would be possible to get the Nutcracker stenting done in Germany and take advantage of reimbursement of costs by the medical insurance company and of an unproblematic aftercare close to my home. This was naive and a big mistake, as I had to find out during 2013.

When I asked Dr. Sclafani if he could name someone in Germany who knows about Nutcracker syndrome and who perhaps can help me to find an interventional radiologist for treatment, he recommended to contact Professor Dr. Thomas Scholbach, the author of the study titled "From the nutcracker-phenomenon of the left renal vein to the midline congestion syndrome as a cause
of migraine, headache, back and abdominal pain and functional disorders of pelvic organs " from 2006. (http://www.ncbi.nlm.nih.gov/pubmed/17161550)

For me, getting to know Dr. Scholbach was another stroke of luck. He is a paediatrician and ultrasound specialist. At that time, he was Head of the Clinic for Paediatrics and Adolescent Medicine in a hospital in Chemnitz. I sended him an email describing my case, including the CCSVI background of my treatment in Brooklyn. He immediately answered my mail via telephone and told me that he was very interested in this subject since having read the first Zamboni papers. My bad experiences with doctors in the past concerning CCSVI in mind, I was totally surprised.
Dr. Scholbach explained to me that the idea of pathological effects of CCSVI outflow problems is very plausible to him and seems to fit to his own studies and hypothesis connected to the Nutcracker syndrome (NCS), which he had coined "midline congestion syndrome" in 2006, not knowing about Zamboni' s study yet.

Interestingly, his approach to this venous cause of several sometimes misdiagnosed symptoms or diseases mistakenly called "idiopathic" comes from the descriptions of symptoms given by ill children and adolescents in his hospital practice. During his medical examinations of the patients with colour doppler ultrasound in the past, he has found more than 1000 cases of left renal vein compression, which is a remarkable basis for a correlation between symptoms described and outflow disturbances caused by NCS.
Before he startet the ultrasound examination of my abdomen and kidney area, he asked me about my symptoms. Besides the other well known typical "MS"- symptoms, I mentioned my long term problems with back pain and this strange and debilitating problem of a balloon-like feeling in my upper abdomen, connected with increasing weakness in my legs when trying to move faster.

I was totally flabbergasted when Dr. Scholbach told me that all these clinical symptoms are common in young Nutcracker patients. Sometimes - that' s my understandind of his explanation - during childhood and adolescence developmental changes of the venous pathways prevent from pathological and debilitating problems otherwise following a Nutcracker phenomenon found in early years. Laying on the treatment table, unhappy moments of my life came into my mind:

-Since I was a small boy, I very often suffered from abdominal pain in different areas. Doctor's explanation was sensitive stomach and bowel as a stress reaction to my difficult family situation - my mother suffered from progressing "MS" since having given birth to me. For everybody this diagnosis of an "idiopathic symptom" was convincing. I learned to live with it.

- When I was 12 years old, I had to give up playing in my highschool soccer team due to heavy back pain in the lower vertebral column. Orthopaedic diagnosis was a sliding vertebra. 8 years later, another orthopaedist didn't find any signs of this bone malformation. But I still had those back pain attacks. Before Nutcracker stenting, back pain in the lower vertebral column had become more and more frequent and enduring. Today, it is almost gone. Have this been signs of NCS? Did my mother eventually suffer from venous malformations, too?

During my appointment with Dr. Scholbach, he confirmed Dr. Sclafani's diagnosis of a severe NCS using colour-doppler ultrasound (CDUS). But in addition, he was able to make visible a large so called "tronc-réno-rachidien" or hemiazygo-left renal trunc, a venous connection between the renal vein and the veins of the epidural plexus, which is not developed in every individual. In my case, he could prove pulsating reflux of renal blood directly into the spine through a "trou de conjugaison" (where spinal nerves leave the spinal column). This is exactly that pathophysiological mechanism described in the 1970ies by Aboulker in France when he examined and treated patients suffering from paresis. Operative interruption of this connecting vein had lead to massive improvement of the symptoms.

(You can download this text from Aboulker from this site here: https://www.wuala.com/pukai/literature/
You have to draw the mouse pointer into the area under "Actions" and click the left arrow for download. Clicking on the title only will show you a blurred preview. I hope it works!)

Dr. Scholbach recently wrote a comprehensive essay for patients about Nutcracker syndrome and other venous compression syndromes like May-Thurner and pelvic congestion, for example. It is very informative, written clearly, contains an anatomical introduction, a of lot of descriptive illustrations and an overview of symptoms found connected with those venous malformations.

You can download this text from this site here, too: https://www.wuala.com/pukai/literature/

During last year, when my walking ability became more and more worse, I had to find out that Nutcracker syndrome is scarcely known among doctors in Germany. It is almost impossible to get a thorough examination of this malformation here (the exeption Scholbach proves the rule) , and that there is no experience in stenting the renal vein at all (I am happy if someone will contradict me!).

So, again, I was very happy to get the stenting done by Dr. Sclafani in early 2014.

From a scientific point of view, waiting one year between the CCSVI treatment with ballooning of the known veins without stenting the Nutcracker compression and repeated CCSVI treatment including the stenting procedure seems to offer additional insight - at least in my case. Long time "handicaps" vanished not until stenting:
An urologist examined my varicozele and testicles short time before the second treatment in Brooklyn. He diagnosed a second-degree varicozele. This diagnosis was confirmed by doctors at the University Hospital in Münster. A ligature of the vein was proposed to perhaps increase quality of spermiogram. They didn't know about the interventional kind of Nutcracker treatment.
Six weeks ago, the local urologist did the ultrasound again and attested the remission of the varicozele for one degree. It's only a slight one-degree varicozele now. Does not seem to be a placebo effect to me. Seems to be restored bloodflow of the left renal vein. I told him about my treatment in Brooklyn, and he was the first doctor here in Germany who really expressed congratulatons for this decision and treatment.
Dr. Scholbach repeated the ultrasound examination this summer, 6 months after stenting. He found the stent completely free, it's lumen excellently filled and with brisk perfusion. Direction of bloodflow of the gonadal vein is normal again - blood flows from the scrotum into the stented renal vein again! And - what is most exciting for me: there s no more blodflow directed through the tronc-réno-rachidien into the spinal canal any more!

And I am able to start jogging again without increasing paralysis of my legs.

There are still a lot of problems left concerning "qualtiy of life". Officially, I suffer from "MS" for 17 years now. Nobody looked at a venous connection of inflammatiory lesions in my nervous system for a long time. -

Last of all, I will ask a question about a connection between NCS and Dr. Schelling's idea of so called "venous back jets" and spinal lesions in MS.
Dr. Sclafani mentions in a former post ( http://www.thisisms.com/forum/chronic-c ... ml#p217031 ), the existance of NCS in a patient with CCSVI will probably have a boosting effect on symptoms.

Dr. Schelling states in his essay;

"In view of the many striking parallels, both as to lesion patterns and tissue changes, between the remote effects of spinal concussion and spinal multiple sclerosis, vehement endogenous subarachnoid fluid shifts might be expected to play a preeminent role in disease genesis. If sufficiently intense, such fluid displacements could actually damage the spinal cord partially or in its entire length, conforming to the zones of insertion of the denticulate ligaments and of other particularly tough anchorages of the spinal cord to the dural sac. The question arises as to which mechanism actuates such intense endogenous shifts of spinal subarachnoid fluid -- shifts which are continually repeated and thereby tend to become intensified.
In comparing arterial as against venous conductivity, and the intensity of the pressure-dependent blood-displacements in the arteries as against the veins, the volume-displacements within the craniovertebral space, which are effected by local veins, can be expected to be far more effective than those of arterial vessels. This conclusion is corroborated by the results of studies on arterial and venous cerebrospinal fluid displacements, which show that far the most intense (endogenous) cerebrospinal fluid shifts are due to venous back-jets rushing back from veins inside the abdomen into veins encompassing the lowest part of the spinal dural sac (cf. Plate XIV, figg. C, D) (39,111). There are individuals who have shown subarachnoid fluid shifts so vehement as to be likened to "plunger strokes" (136).
Continually subjecting the spinal cord, in short-term repetitions, to this intrinsically self-aggravating mechanism, venous back-jet induced subarachnoid fluid displacements from the lower spinal canal may gradually become so intensified as to eventually be injurious. Dragging the spinal cord headwards, such intense subarachnoid fluid shifts may be capable of injuring the spinal cord by means of abrupt tensile impacts exerting their effects specifically along those fibrous structures which represent the spinal cord’s most stressed anchorages to the dural sac.
Both specific spinal cord patches and brain plaques, though differing essentially as to form and structure, thus become understandable in terms of one and the same causative mechanism, namely vehement, specifically localized venous regurgitation into the craniovertebral space. " ( http://www.ms-info.net/evo/msmanu/956.htm#level_5_2 )

Is it possible that pulsating inflow of blood from the left renal vein into the spinal canal via the tronc-réno-rachidien forced by a Nutcracker compression fits exactly into Dr. Schelling's description of "venous back-jets rushing back from veins inside the abdomen into veins encompassing the lowest part of the spinal dural sac" ?

Thank you for taking your time and reading this long post -

-Marcus
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drsclafani
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Re: DrSclafani answers some questions

Post by drsclafani »

pukai wrote:Nutcracker Syndrome - CCSVI - Midline Congestion Syndrome - Venous Back Jets

As I already wrote in my first post Thursday last week, in 2013, during my first treatment of stenosed jugular vein valves on both sides in Brooklyn, a severe Nutcracker syndrome was diagnosed.
With IVUS, Dr. Sclafani found a compression of the left renal vein between the aorta and the superior mesenteric artery (SMA) which accounted for approximately 90% stenosis of the lumen. A pressure gradient of 6mm between the vena cava inferior and the area behind the compression close to the kidney (the hilar region) was measured - normally, there is no gradient at all (or a maximum of 1mm). As a consequence, instead of flowing into the vena cava inferior and then directly to the heart, there was reflux of left renal vein blood downwards into the gonadal vein and into the scrotum and upwards into the hemi-azygo-renal trunk and the hemiazygos vein.
Lacking a stent of sufficient dimensions to safely deploy it at that moment, I was offered the opportunity to return after the weekend for additional stenting of the left renal vein. But after thoroughly discussing this situation with my wife, who accompanied me, and Dr. Sclafani, I decided
to defer stenting until I saw the outcome of the angioplasty of jugular and azygos veins.

There were two main reasons for this decision:

Firstly, I had read about all the "main" areas (jugular and azygos veins) of the CCSVI treatment mentioned in the Zamboni studies, and I was prepared for some findings. I have to admit that I had not really addressed the Nutcracker subject at that time.
I had made the experience that getting adequate diagnosis and treatment of CCSVI in Germany was impossible. Being engaged in this field as someone with a MS-label had the characteristics of some kind of underground fight because of reasons far away from help for patients or the search for medical insight. And - of course - no way to get support from your medical insurance at all. Based on this background, for me, the decision to get treated by Dr. Sclafani -far away from home and "out of the pocket" - was the only logical one.

On the other hand, the condition described above as Nutcracker syndrome for me was clearly a vascular problem with indisputable pathological clinical symptoms even for somebody not diagnosed with MS: For example, reflux of blood into the gonadal vein and scrotum leads to painful varikozele and can impair fertility. Both of these symptoms had been part of my problems in the recent past without any of the doctors in charge even thinking of Nutcracker. Now, with Dr. Sclafani's gold-standard diagnosis, I thought that it would be possible to get the Nutcracker stenting done in Germany and take advantage of reimbursement of costs by the medical insurance company and of an unproblematic aftercare close to my home. This was naive and a big mistake, as I had to find out during 2013.

When I asked Dr. Sclafani if he could name someone in Germany who knows about Nutcracker syndrome and who perhaps can help me to find an interventional radiologist for treatment, he recommended to contact Professor Dr. Thomas Scholbach, the author of the study titled "From the nutcracker-phenomenon of the left renal vein to the midline congestion syndrome as a cause
of migraine, headache, back and abdominal pain and functional disorders of pelvic organs " from 2006. (http://www.ncbi.nlm.nih.gov/pubmed/17161550)

For me, getting to know Dr. Scholbach was another stroke of luck. He is a paediatrician and ultrasound specialist. At that time, he was Head of the Clinic for Paediatrics and Adolescent Medicine in a hospital in Chemnitz. I sended him an email describing my case, including the CCSVI background of my treatment in Brooklyn. He immediately answered my mail via telephone and told me that he was very interested in this subject since having read the first Zamboni papers. My bad experiences with doctors in the past concerning CCSVI in mind, I was totally surprised.
Dr. Scholbach explained to me that the idea of pathological effects of CCSVI outflow problems is very plausible to him and seems to fit to his own studies and hypothesis connected to the Nutcracker syndrome (NCS), which he had coined "midline congestion syndrome" in 2006, not knowing about Zamboni' s study yet.

Interestingly, his approach to this venous cause of several sometimes misdiagnosed symptoms or diseases mistakenly called "idiopathic" comes from the descriptions of symptoms given by ill children and adolescents in his hospital practice. During his medical examinations of the patients with colour doppler ultrasound in the past, he has found more than 1000 cases of left renal vein compression, which is a remarkable basis for a correlation between symptoms described and outflow disturbances caused by NCS.
Before he startet the ultrasound examination of my abdomen and kidney area, he asked me about my symptoms. Besides the other well known typical "MS"- symptoms, I mentioned my long term problems with back pain and this strange and debilitating problem of a balloon-like feeling in my upper abdomen, connected with increasing weakness in my legs when trying to move faster.

I was totally flabbergasted when Dr. Scholbach told me that all these clinical symptoms are common in young Nutcracker patients. Sometimes - that' s my understandind of his explanation - during childhood and adolescence developmental changes of the venous pathways prevent from pathological and debilitating problems otherwise following a Nutcracker phenomenon found in early years. Laying on the treatment table, unhappy moments of my life came into my mind:

-Since I was a small boy, I very often suffered from abdominal pain in different areas. Doctor's explanation was sensitive stomach and bowel as a stress reaction to my difficult family situation - my mother suffered from progressing "MS" since having given birth to me. For everybody this diagnosis of an "idiopathic symptom" was convincing. I learned to live with it.

- When I was 12 years old, I had to give up playing in my highschool soccer team due to heavy back pain in the lower vertebral column. Orthopaedic diagnosis was a sliding vertebra. 8 years later, another orthopaedist didn't find any signs of this bone malformation. But I still had those back pain attacks. Before Nutcracker stenting, back pain in the lower vertebral column had become more and more frequent and enduring. Today, it is almost gone. Have this been signs of NCS? Did my mother eventually suffer from venous malformations, too?

During my appointment with Dr. Scholbach, he confirmed Dr. Sclafani's diagnosis of a severe NCS using colour-doppler ultrasound (CDUS). But in addition, he was able to make visible a large so called "tronc-réno-rachidien" or hemiazygo-left renal trunc, a venous connection between the renal vein and the veins of the epidural plexus, which is not developed in every individual. In my case, he could prove pulsating reflux of renal blood directly into the spine through a "trou de conjugaison" (where spinal nerves leave the spinal column). This is exactly that pathophysiological mechanism described in the 1970ies by Aboulker in France when he examined and treated patients suffering from paresis. Operative interruption of this connecting vein had lead to massive improvement of the symptoms.

(You can download this text from Aboulker from this site here: https://www.wuala.com/pukai/literature/
You have to draw the mouse pointer into the area under "Actions" and click the left arrow for download. Clicking on the title only will show you a blurred preview. I hope it works!)

Dr. Scholbach recently wrote a comprehensive essay for patients about Nutcracker syndrome and other venous compression syndromes like May-Thurner and pelvic congestion, for example. It is very informative, written clearly, contains an anatomical introduction, a of lot of descriptive illustrations and an overview of symptoms found connected with those venous malformations.

You can download this text from this site here, too: https://www.wuala.com/pukai/literature/

During last year, when my walking ability became more and more worse, I had to find out that Nutcracker syndrome is scarcely known among doctors in Germany. It is almost impossible to get a thorough examination of this malformation here (the exeption Scholbach proves the rule) , and that there is no experience in stenting the renal vein at all (I am happy if someone will contradict me!).

So, again, I was very happy to get the stenting done by Dr. Sclafani in early 2014.

From a scientific point of view, waiting one year between the CCSVI treatment with ballooning of the known veins without stenting the Nutcracker compression and repeated CCSVI treatment including the stenting procedure seems to offer additional insight - at least in my case. Long time "handicaps" vanished not until stenting:
An urologist examined my varicozele and testicles short time before the second treatment in Brooklyn. He diagnosed a second-degree varicozele. This diagnosis was confirmed by doctors at the University Hospital in Münster. A ligature of the vein was proposed to perhaps increase quality of spermiogram. They didn't know about the interventional kind of Nutcracker treatment.
Six weeks ago, the local urologist did the ultrasound again and attested the remission of the varicozele for one degree. It's only a slight one-degree varicozele now. Does not seem to be a placebo effect to me. Seems to be restored bloodflow of the left renal vein. I told him about my treatment in Brooklyn, and he was the first doctor here in Germany who really expressed congratulatons for this decision and treatment.
Dr. Scholbach repeated the ultrasound examination this summer, 6 months after stenting. He found the stent completely free, it's lumen excellently filled and with brisk perfusion. Direction of bloodflow of the gonadal vein is normal again - blood flows from the scrotum into the stented renal vein again! And - what is most exciting for me: there s no more blodflow directed through the tronc-réno-rachidien into the spinal canal any more!

And I am able to start jogging again without increasing paralysis of my legs.

There are still a lot of problems left concerning "qualtiy of life". Officially, I suffer from "MS" for 17 years now. Nobody looked at a venous connection of inflammatiory lesions in my nervous system for a long time. -

Last of all, I will ask a question about a connection between NCS and Dr. Schelling's idea of so called "venous back jets" and spinal lesions in MS.
Dr. Sclafani mentions in a former post ( http://www.thisisms.com/forum/chronic-c ... ml#p217031 ), the existance of NCS in a patient with CCSVI will probably have a boosting effect on symptoms.

Dr. Schelling states in his essay;

"In view of the many striking parallels, both as to lesion patterns and tissue changes, between the remote effects of spinal concussion and spinal multiple sclerosis, vehement endogenous subarachnoid fluid shifts might be expected to play a preeminent role in disease genesis. If sufficiently intense, such fluid displacements could actually damage the spinal cord partially or in its entire length, conforming to the zones of insertion of the denticulate ligaments and of other particularly tough anchorages of the spinal cord to the dural sac. The question arises as to which mechanism actuates such intense endogenous shifts of spinal subarachnoid fluid -- shifts which are continually repeated and thereby tend to become intensified.
In comparing arterial as against venous conductivity, and the intensity of the pressure-dependent blood-displacements in the arteries as against the veins, the volume-displacements within the craniovertebral space, which are effected by local veins, can be expected to be far more effective than those of arterial vessels. This conclusion is corroborated by the results of studies on arterial and venous cerebrospinal fluid displacements, which show that far the most intense (endogenous) cerebrospinal fluid shifts are due to venous back-jets rushing back from veins inside the abdomen into veins encompassing the lowest part of the spinal dural sac (cf. Plate XIV, figg. C, D) (39,111). There are individuals who have shown subarachnoid fluid shifts so vehement as to be likened to "plunger strokes" (136).
Continually subjecting the spinal cord, in short-term repetitions, to this intrinsically self-aggravating mechanism, venous back-jet induced subarachnoid fluid displacements from the lower spinal canal may gradually become so intensified as to eventually be injurious. Dragging the spinal cord headwards, such intense subarachnoid fluid shifts may be capable of injuring the spinal cord by means of abrupt tensile impacts exerting their effects specifically along those fibrous structures which represent the spinal cord’s most stressed anchorages to the dural sac.
Both specific spinal cord patches and brain plaques, though differing essentially as to form and structure, thus become understandable in terms of one and the same causative mechanism, namely vehement, specifically localized venous regurgitation into the craniovertebral space. " ( http://www.ms-info.net/evo/msmanu/956.htm#level_5_2 )

Is it possible that pulsating inflow of blood from the left renal vein into the spinal canal via the tronc-réno-rachidien forced by a Nutcracker compression fits exactly into Dr. Schelling's description of "venous back-jets rushing back from veins inside the abdomen into veins encompassing the lowest part of the spinal dural sac" ?

Thank you for taking your time and reading this long post -

-Marcus
Very good and thorough description of your situation and of the concepts involved. If any readers have questions, please give them here and I will answer as best i can

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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1eye
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Re: DrSclafani answers some questions

Post by 1eye »

This indeed is possibly the answer to where venous back-jets come from, why they are so powerful, and why they are so harmful.

It is necessary to understand with knowledge, what a 90% stenosis means. Take a thumb and put it over the end of a garden hose.

They are powerful because the heart is still trying to get the same volume through the kidneys, but the passage is much smaller. The resulting velocity of blood may carry the jet past the blood brain barrier.

But this is not an ordinary organ like a muscle. This blood is the result of filtering impurities. Because it has not been allowed to remain in the organ long enough (because of increased velocity) the blood has a different content and is more impure than it would otherwise be. If it is refluxed into the brain it will carry these impurities with it past the blood-brain-barrier.

It is interesting to see the speculation that the NCS is caused by gravity in an upright individual. That might mean that going down on all fours like an ape might take some of the pressure off. Personally, I have felt, in a hot shower, the effect of bending over, increasing the stenosis and adding the effect of gravity to the refluxing blood to my brain. Because of the reduced viscosity of the hotter blood it is easier for the back jets to reach my brain and make me dizzy enough to fall over.

JMHO
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Re: DrSclafani answers some questions

Post by drsclafani »

1eye wrote:This indeed is possibly the answer to where venous back-jets come from, why they are so powerful, and why they are so harmful.

It is necessary to understand with knowledge, what a 90% stenosis means. Take a thumb and put it over the end of a garden hose.

They are powerful because the heart is still trying to get the same volume through the kidneys, but the passage is much smaller. The resulting velocity of blood may carry the jet past the blood brain barrier.

But this is not an ordinary organ like a muscle. This blood is the result of filtering impurities. Because it has not been allowed to remain in the organ long enough (because of increased velocity) the blood has a different content and is more impure than it would otherwise be. If it is refluxed into the brain it will carry these impurities with it past the blood-brain-barrier.

It is interesting to see the speculation that the NCS is caused by gravity in an upright individual. That might mean that going down on all fours like an ape might take some of the pressure off. Personally, I have felt, in a hot shower, the effect of bending over, increasing the stenosis and adding the effect of gravity to the refluxing blood to my brain. Because of the reduced viscosity of the hotter blood it is easier for the back jets to reach my brain and make me dizzy enough to fall over.

JMHO
I do not think that the impurities in the blood are causing a problem in this situation. There is nothing about NCS that seems to be leading to renal failure of filtration.

Not sure that backjets are the issue here either. Venous congestion is the major problem causing swelling of the spinal cord, diminished perfusion and CSF hydrodynamic derangements. Dr. Schelling is speaking of increased mobility of the spinal cord and shearing in the area of ligamentous attachment. He exemplefies this by discussing pathological differences between the brain and spinal cord in lesion orientation location.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Post by Cece »

During my appointment with Dr. Scholbach, he confirmed Dr. Sclafani's diagnosis of a severe NCS using colour-doppler ultrasound (CDUS). But in addition, he was able to make visible a large so called "tronc-réno-rachidien" or hemiazygo-left renal trunc, a venous connection between the renal vein and the veins of the epidural plexus, which is not developed in every individual. In my case, he could prove pulsating reflux of renal blood directly into the spine through a "trou de conjugaison" (where spinal nerves leave the spinal column).
Dr. Scholbach repeated the ultrasound examination this summer, 6 months after stenting. He found the stent completely free, it's lumen excellently filled and with brisk perfusion. Direction of bloodflow of the gonadal vein is normal again - blood flows from the scrotum into the stented renal vein again! And - what is most exciting for me: there s no more blodflow directed through the tronc-réno-rachidien into the spinal canal any more!

And I am able to start jogging again without increasing paralysis of my legs.
This seems like strong proof that the renal vein reflux was directly impacting the spine and that the treatment resolved the issue.
Do you know if Dr. Scholbach is intending to publish on this or be involved with ISNVD?
Congrats, big congrats, on the health improvements.
Last edited by Cece on Thu Oct 23, 2014 8:54 pm, edited 1 time in total.
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Re: DrSclafani answers some questions

Post by Thekla »

I've recently noticed that after sleeping on my side for a few hours, if I roll on my back with my legs straight, within a couple minutes, my feet and both lower legs flush and become uncomfortably hot, both perceived temperature and externally verified. Would this indicate some blood flow disturbance or just a neuropathy? Occasionally during the day, one or both feet will get suddenly hot (they used to just get cold). During the day, I can relieve it by pedaling a few kilometers on my theratrainer-cycle, even if I use just the motor assist and am not actually pushing the pedals, the temperature moderates. At night, it is definitely triggered by posture.
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Re: DrSclafani answers some questions

Post by 1eye »

My feet both get extremely hot when I am trying to walk wearing shoes. I cannot keep this up for long.

It seems to me what you are describing is posture-dependent. I take seriously the statement that in upright humans the area between the aorta and superior mesenteric artery can get narrow enough to cause venous stenosis. If the difference is in the accustomed posture, it is sure to be worse when lying on the back, and better when on all fours. Your pedaling may be making the blood go just that much faster in your legs to relieve the posture-dependent problem. I would guess if you can manage to get on all fours, that may work as well. JMHO

https://www.wuala.com/pukai/literature/
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Englishman in New York - Sept 14

Post by MarkW »

pukai wrote: That' s why I would like to give something back to other - perhaps new - readers in this forum and give a report about my Nutcracker and CCSVI experiences, as someone with a disease coined "MS".
Almost exactly one year after the first CCSVI treatment without Nutcracker stenting, Dr S repeated the whole procedure, this time including the renal vein stenting. -Marcus
I was treated by Dr S last month for Nutcracker syndrome using 2 14 x 60mm stents deployed from hilium to inferior vena cava. Pressure gradient 9mm before and no gradient after deployment. I will write further in the future. Maybe Dr S will comment if he is diagnosing more NCS than previously or maybe in later stages of MS.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Retired Industrial Pharmacist. 24 years of study about MS.
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: DrSclafani answers some questions

Post by Cece »

An old article that came up in a search for vein stenosis, because yeah I search that:
Axillary and subclavian vein stenosis: percutaneous angioplasty.

S Glanz
D H Gordon
G S Lipkowitz
K M Butt
J Hong
S J Sclafani

Department of Radiology, State University of New York, Health Science Center, Brooklyn 11203.
Radiology (Impact Factor: 6.34). 09/1988; 168(2):371-3.

Source: PubMed
ABSTRACT Twenty-nine percutaneous balloon dilations of the axillary and subclavian veins were performed in 19 patients. Stenoses occurred in typical locations of anatomic narrowing or at sites of previous trauma. The initial success rate was 76%, with a 1-year patency rate of 35% and a 2-year patency rate of 6%. Angioplasty can be performed on an outpatient basis with a very low rate of significant complications and can be repeated numerous times to keep a vein patent for many years. This procedure is especially valuable in dialysis patients who have limited access sites.
http://www.researchgate.net/publication ... ngioplasty

These are different veins and different disease than CCSVI patients but that 2-year patency rate is very much the opposite of durable. Do you have an estimate of the 2-year patency rate in CCSVI?

MarkW, when you had your Nutcracker syndrome treated, how did your jugulars look? Was there any need for retreating? I hope when you say you will write further in the future, that you are referring to the near future, because this is an interesting development, and another case of renal stenosis treated long after other ccsvi stenoses are treated, which isolates the effect of the renal stenosis treatment.
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Re: DrSclafani answers some questions

Post by 1eye »

These are different veins and different disease than CCSVI patients but that 2-year patency rate is very much the opposite of durable.
My brother Bill has had a shunt in his jugular for 50 years. I think there might be an ongoing problem that is causing the original stenosis as well as the restenosis in "MS". But these are not jugulars. Maybe that's the best we can expect from ballooning these veins.
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Re: DrSclafani answers some questions

Post by Cece »

1eye wrote:I think there might be an ongoing problem that is causing the original stenosis as well as the restenosis in "MS".
There was that study showing abnormal collagen in MS jugulars even at distant spots from the obstructions.
Abnormal collagen could be a cause (or a result) of the thickened valves, and that thickening of the valves could lead to restenosis after angioplasty in cases of underdilatation.
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