DrSclafani answers some questions

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Re: DrSclafani answers some questions

Postby EJC » Wed Dec 26, 2012 3:58 pm

drsclafani wrote:When most IRs started treating these veins in 2010, they were unsure of how large a balloon to use. It was becoming clear quite that the balloon size we expected to use was smaller than we actually needed. We were basing our balloon sizing on veins that were stenosed by scarring which requires smaller balloons. Recommendations from those who started treatments earlier than the majority of us, suggested things like 18-20 mm balloons in woman and 20-24mm in men, use of cutting wires were also advised. These were very damaging. Moreover anticoagulation utilization was unclear. Some used no or very short term anticoagulation (remember patients were traveling long distances to reach their interventionalist.). It wasn't clear to me until january-february of 2011, by the use of IVUS, that the stenoses were caused by immobile valves not stenosed veins. and that larger balloons could be used

In response to injuries and occlusions, many treating doctors played it safe, using smaller balloons that would not injure the vessels. Not surprisingly this incomplete treatment resulted in very short term improvements caused by opening the valve obstructions only for a short time before restenosis occurred. When restenosis was treated by smallish balloons again, it is not surprising that improvements would be limited.

I would say that i have treated more patients who had been treated previously by others than patients who had never been treated. If you recall, i was stopped from doing procedures after about 25 patients back in April 2010. By the time i returned to treatment full time, nine months had elapsed and many patients had been treated with, as you can imagine, short term benefits or problems with occlusions. In the beginning I also had a fair number of thromboses. However rather than move to smaller balloons as was so tempting, i persisted and worked out my algorithm using cross sectional area of the vein to select my balloon size. so i continue to use fairly large balloons, averaging at 14.5 mm with range from 8mm to 24 mm. My occlusion rate is fairly low at this time and early detection has allowed salvage of about half of those.

I have therefore treated many patients who were underdilated before and in some improvements have been better than the first time. treatment remains a "crapshoot" with unpredictable results. But many of my best improvements have come in patients who had improvement from prior treatments that required another treatment.

DrS


^ These are very interesting observations and in part answer my question of a week or so ago which was "Where are you now with CCSVI".

The description above for "average patient" first treatment mirrors Emma's treatment in Dec 2010 in Edinburgh.

Even back then Donald Reid was concentrating on valvular malformations rather than "stenosis" per se. He explained the treatment was in it's infancy and balloon size and treatment would err on the side of caution. It's the main reason we chose Scotland and we agree completely with how the process was handled at the time.

Emma improvements were transient but took some months to regress rather than days, weeks or hours.

Questions:- (I do realise it may be difficult to give a general one size fits all answer to these as every patient will display subtle difference - so please answer in majority):-

1. What would be the ideal (best case scenario) treatment for a malformed/malfunctioning valve? Rupturing with a balloon or removal completely with a cutting device that may not even have yet been perfected/designed?

2. How important in the anatomy are these valves? Would removal cause other potential issues?

3. How does hypoplasia of an entire jugular effective prospective treatment? One of Emma's veins measure circa 12mm the other 6mm (and diagnosed hypoplastic.)

4. Where do valves fit in with the azygos and renal veins.

Sorry if some of this has been covered already. I don't expect answers to the following, these are my thoughts being transferred to type, do feel free to comment if appropriate though.

In my mind - Emma's improvements from the first procedure (albeit transient) confirm a relationship with the procedure and some symptoms currently attributed to MS, particularly eyesight improvements and circulation of blood to the extremities.

This leaves us now in a position where we're weighing up the possibility that procedure one in Edinburgh was not fully effective for the reasons described above so clearly.

So do we start saving for a second procedure at some point in the future? Is there significant risk that a second procedure may in fact do more damage than no procedure at all.

I've always wanted to visit New York!
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Dec 26, 2012 10:51 pm

EJC wrote:Emma improvements were transient but took some months to regress rather than days, weeks or hours.

Questions:- (I do realise it may be difficult to give a general one size fits all answer to these as every patient will display subtle difference - so please answer in majority):-

1. What would be the ideal (best case scenario) treatment for a malformed/malfunctioning valve? Rupturing with a balloon or removal completely with a cutting device that may not even have yet been perfected/designed?

Because there is no data on outcomes of removing valves by cutting device or surgical excision, we cannot say much. I think that surgery may not be necessary in most situations. I am intrigued by a valvulotome but not sure if and when that will be a reality. balloon angioplasty is probably going to require several treatments. many patients will need a second treatment shortly after the first one. This is not a feasible approach NOW because of the lack of insurance coverage. But we shall see

2. How important in the anatomy are these valves? Would removal cause other potential issues?


These valves are probably more important in quadripeds and certainly in bats. I have read that 15% of humans do not have jugular valves. Incompetency of the jugular vein in the elderly is reported to result, on occasion, in transient global amnesia. It hasnt happened to any of my patients, as far as i know.

3. How does hypoplasia of an entire jugular effective prospective treatment? One of Emma's veins measure circa 12mm the other 6mm (and diagnosed hypoplastic.)


Hypoplasia of an entire jugular vein is not a great opportunity for treatment. Attempts to dilate the vein often result in thrombosis so I have generally abandoned aggressive attempts to correct it. I would NOT consider a 6 mm vein to be hypoplastic. I would call it small, i consider a vein smaller than 5mm in diameter to be hypoplastic.

4. Where do valves fit in with the azygos and renal veins.


The azygous vein was thought to be absent of valves. However I find that many of these veins have valves and that those valves are thickened, stiff and immobile on IVUS which detects far more abnormal valves than catheter venography.

I have never seen a valve in the renal vein. Renal vein problems are not intraluminal. They are compression occlusions.

In my mind - Emma's improvements from the first procedure (albeit transient) confirm a relationship with the procedure and some symptoms currently attributed to MS, particularly eyesight improvements and circulation of blood to the extremities.

This leaves us now in a position where we're weighing up the possibility that procedure one in Edinburgh was not fully effective for the reasons described above so clearly.

So do we start saving for a second procedure at some point in the future? Is there significant risk that a second procedure may in fact do more damage than no procedure at all.

I've always wanted to visit New York!
[/quote]

New York, New York, its a helluva town.

I am not going to advise you what you should do on line. i dont know enough about emma.
Last edited by drsclafani on Thu Dec 27, 2012 5:38 pm, edited 2 times in total.
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Re: DrSclafani answers some questions

Postby Robnl » Thu Dec 27, 2012 1:51 am

..
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Re: DrSclafani answers some questions

Postby Cece » Thu Dec 27, 2012 12:02 pm

EJC wrote:Emma improvements were transient but took some months to regress rather than days, weeks or hours.

Questions:- (I do realise it may be difficult to give a general one size fits all answer to these as every patient will display subtle difference - so please answer in majority):-

1. What would be the ideal (best case scenario) treatment for a malformed/malfunctioning valve? Rupturing with a balloon or removal completely with a cutting device that may not even have yet been perfected/designed?
drsclafani wrote:Because there is no data on outcomes of removing valves by cutting device or surgical excision, we cannot say much. I think that surgery may not be necessary in most situations. I am intrigued by a valvulotome but not sure if and when that will be a reality. balloon angioplasty is probably going to require several treatments. many patients will need a second treatment shortly after the first one. This is not a feasible approach NOW because of the lack of insurance coverage. But we shall see

EJC wrote:2. How important in the anatomy are these valves? Would removal cause other potential issues?
drsclafani wrote:These valves are probably more important in quadripeds and certainly in bats. I have read that 15% of humans do not have jugular valves. Incompetency of the jugular vein in the elderly is reported to result, on occasion, in transient global amnesia. It hasnt happened to any of my patients, as far as i know.

EJC wrote:3. How does hypoplasia of an entire jugular effective prospective treatment? One of Emma's veins measure circa 12mm the other 6mm (and diagnosed hypoplastic.)
drsclafani wrote:Hypoplasia of an entire jugular vein is not a great opportunity for treatment. Attempts to dilate the vein often result in thrombosis so I have generally abandoned aggressive attempts to correct it. I would consider a 6 mm vein to be hypoplastic. I would call it small, i consider a vein smaller than 5mm in diameter to be hypoplastic.

EJC wrote: 4. Where do valves fit in with the azygos and renal veins.
drslcafani wrote:The azygous vein was thought to be absent of valves. However I find that many of these veins have valves and that those valves are thickened, stiff and immobile on IVUS which detects far more abnormal valves than catheter venography.

I have never seen a valve in the renal vein. Renal vein problems are not intraluminal. They are compression occlusions.

EJC wrote:In my mind - Emma's improvements from the first procedure (albeit transient) confirm a relationship with the procedure and some symptoms currently attributed to MS, particularly eyesight improvements and circulation of blood to the extremities.

This leaves us now in a position where we're weighing up the possibility that procedure one in Edinburgh was not fully effective for the reasons described above so clearly.

So do we start saving for a second procedure at some point in the future? Is there significant risk that a second procedure may in fact do more damage than no procedure at all.

I've always wanted to visit New York!
drsclafani wrote:New York, New York, its a helluva town.

I am not going to advise you what you should do on line. i dont know enough about emma.

I didn't know or didn't remember that the azygous vein was thought to be free of valves. It's similar to the vertebral veins, also thought not to have valves, also seen to have valves when imaged.
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Re: DrSclafani answers some questions

Postby EJC » Thu Dec 27, 2012 12:04 pm

drsclafani wrote:
I am not going to advise you what you should do on line. i dont know enough about emma.


Of course I wouldn't expect you to tell Me what to do when you've never seen a patient - however your answers above and clear and easy to understand which is all I could expect.

I find your theory of multiple procedures interesting. Insurance isn't an issue in the UK with our National Health Service - however here you replace your problem of insurance with getting the procedure approved by NICE for it to be offered by the NHS. 20 years if we're lucky?

If I'm reading your answers right, valves seem to be the big issue with many of the symptoms in a substantial percentage of the patients you have treated?

Repeated ballooning of the valves effective "trains" them to stay in the newly opened position rather than "repairing" themselves back to the previous malformation?

Do you think these are congenital malformations?
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Re: DrSclafani answers some questions

Postby HappyPoet » Thu Dec 27, 2012 12:43 pm

The first link is an excellent resource and lists 18 studies/articles for "multiple sclerosis; the other links are not included in the index."

http://www.chiroindex.org/?search_page= ... ct#results
"Index to Chiropractic Literature"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3182130/
"A survey of accessibility and utilisation of chiropractic services for wheelchair-users in the United Kingdom: What are the issues?"

http://www.ncbi.nlm.nih.gov/pubmed/12625659
"Use of unconventional therapies by individuals with multiple sclerosis"

http://www.google.com/url?sa=t&rct=j&q= ... L10FikwKdQ
"Upper Cervical Chiropractic Management of a Multiple Sclerosis Patient: A Case Report"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921783/
"Trigeminal neuralgia and chiropractic care: a case report"
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Re: DrSclafani answers some questions

Postby drsclafani » Thu Dec 27, 2012 5:34 pm

HappyPoet wrote:The first link is an excellent resource and lists 18 studies/articles for "multiple sclerosis; the other links are not included in the index."

http://www.chiroindex.org/?search_page= ... ct#results
"Index to Chiropractic Literature"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3182130/
"A survey of accessibility and utilisation of chiropractic services for wheelchair-users in the United Kingdom: What are the issues?"

http://www.ncbi.nlm.nih.gov/pubmed/12625659
"Use of unconventional therapies by individuals with multiple sclerosis"

http://www.google.com/url?sa=t&rct=j&q= ... L10FikwKdQ
"Upper Cervical Chiropractic Management of a Multiple Sclerosis Patient: A Case Report"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921783/
"Trigeminal neuralgia and chiropractic care: a case report"


I reviewed the abstracts that were available. They were either case reports, retrospective reviews with insufficient data to render an opinion or simply opinions.

i am interested in this paper: Eighty-one patients with multiple sclerosis and Parkinson’s disease undergoing upper cervical chiropractic care to correct vertebral subluxation: a retrospective analysis

does anyone have a copy they would like to share?
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Re: DrSclafani answers some questions

Postby drsclafani » Thu Dec 27, 2012 5:36 pm

Robnl wrote:..


rob
is there a question hidden here :-D
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Re: DrSclafani answers some questions

Postby drsclafani » Thu Dec 27, 2012 5:46 pm

I have been using the retrospectoscope and I have noted an increasing percentage of my patients are coming from Europe, including finland, denmark, germany, poland, england, scotland, ireland, italy, greece, switzerland and france.

I know that many of my patients, and presumably other Europeans, learned of me from reading on TIMS. Iam curious to hear there opinions about the state of CCSVI in Europe. What is the attitude of European neurologists regarding CCSVI? How many centers and doctors are currently operating in Europe? Is there governmenetal obstruction, interference, meddling in patient affairs? What are the reasons that patients would travel across the Atlantic to be treated in the USA? What obstacles exist to treatment in their own country? in neighboring European states? in the United States?

For those Northamericaners, similar questions: would you go back, if yes, why? if no, why not? what are the impediments? What are the benefits?

Any comments would be welcome. We North Americans always have a slanted opinion and in this international crisis, we need to understand each other

thanks

DrSclafani
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Re: DrSclafani answers some questions

Postby drsclafani » Thu Dec 27, 2012 5:51 pm

Cece wrote:
EJC wrote:Emma improvements were transient but took some months to regress rather than days, weeks or hours.

Questions:- (I do realise it may be difficult to give a general one size fits all answer to these as every patient will display subtle difference - so please answer in majority):-

1. What would be the ideal (best case scenario) treatment for a malformed/malfunctioning valve? Rupturing with a balloon or removal completely with a cutting device that may not even have yet been perfected/designed?
drsclafani wrote:Because there is no data on outcomes of removing valves by cutting device or surgical excision, we cannot say much. I think that surgery may not be necessary in most situations. I am intrigued by a valvulotome but not sure if and when that will be a reality. balloon angioplasty is probably going to require several treatments. many patients will need a second treatment shortly after the first one. This is not a feasible approach NOW because of the lack of insurance coverage. But we shall see

EJC wrote:2. How important in the anatomy are these valves? Would removal cause other potential issues?
drsclafani wrote:These valves are probably more important in quadripeds and certainly in bats. I have read that 15% of humans do not have jugular valves. Incompetency of the jugular vein in the elderly is reported to result, on occasion, in transient global amnesia. It hasnt happened to any of my patients, as far as i know.

EJC wrote:3. How does hypoplasia of an entire jugular effective prospective treatment? One of Emma's veins measure circa 12mm the other 6mm (and diagnosed hypoplastic.)
drsclafani wrote:Hypoplasia of an entire jugular vein is not a great opportunity for treatment. Attempts to dilate the vein often result in thrombosis so I have generally abandoned aggressive attempts to correct it. I would consider a 6 mm vein to be hypoplastic. I would call it small, i consider a vein smaller than 5mm in diameter to be hypoplastic.

EJC wrote: 4. Where do valves fit in with the azygos and renal veins.
drslcafani wrote:The azygous vein was thought to be absent of valves. However I find that many of these veins have valves and that those valves are thickened, stiff and immobile on IVUS which detects far more abnormal valves than catheter venography.

I have never seen a valve in the renal vein. Renal vein problems are not intraluminal. They are compression occlusions.

EJC wrote:In my mind - Emma's improvements from the first procedure (albeit transient) confirm a relationship with the procedure and some symptoms currently attributed to MS, particularly eyesight improvements and circulation of blood to the extremities.

This leaves us now in a position where we're weighing up the possibility that procedure one in Edinburgh was not fully effective for the reasons described above so clearly.

So do we start saving for a second procedure at some point in the future? Is there significant risk that a second procedure may in fact do more damage than no procedure at all.

I've always wanted to visit New York!
drsclafani wrote:New York, New York, its a helluva town.

I am not going to advise you what you should do on line. i dont know enough about emma.

I didn't know or didn't remember that the azygous vein was thought to be free of valves. It's similar to the vertebral veins, also thought not to have valves, also seen to have valves when imaged.


cece
most non visceral veins seem to have valves. I think ignorance was more prevalent that knowledge or curiosity regarding many of the veins.
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Re: DrSclafani answers some questions

Postby Cece » Thu Dec 27, 2012 6:00 pm

drsclafani wrote:i am interested in this paper: Eighty-one patients with multiple sclerosis and Parkinson’s disease undergoing upper cervical chiropractic care to correct vertebral subluxation: a retrospective analysis

does anyone have a copy they would like to share?

http://www.erinelster.com/files/jvsr%20 ... d%2081.pdf
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Re: DrSclafani answers some questions

Postby drsclafani » Thu Dec 27, 2012 6:28 pm

Cece wrote:
drsclafani wrote:i am interested in this paper: Eighty-one patients with multiple sclerosis and Parkinson’s disease undergoing upper cervical chiropractic care to correct vertebral subluxation: a retrospective analysis

does anyone have a copy they would like to share?

http://www.erinelster.com/files/jvsr%20 ... d%2081.pdf


thanks, i will study it.
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Re: DrSclafani answers some questions

Postby CureOrBust » Thu Dec 27, 2012 11:15 pm

I had UCC from a local specialist, who is quite vocal. in Australia (he is the "goto"| guy for the current affairs TV programs, and I think he also acts as the supplier of the devices used for UCC within Aus). He perform before & after X-Rays and saw that there was major misalignment in my Atlas. The After X-Ray taken a week later showed this to have reduced significantly. I noticed NO difference in any symptoms; although he found my legs were now similar lengths, after dropping them 10 times...

I also note that the above published research is in the "Journal of Vertebral Subluxation"
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Re: DrSclafani answers some questions

Postby tilde » Fri Dec 28, 2012 5:46 am

Hi,

This is an answer from a long time lurker. I have been reading this forum daily from 2009, and I have read all the posts in this tread!!!

Now to your question:
I live in Norway, in the capital Oslo. I go regularily to see one of the most recognized neurologists in the country. I have tried discussing CCSVI with her, but it is quite difficult. She does not have any real knowledge of CCSVI, but is still a strong opponent to the theory (She appears to become rather angry whenever the subject arises). Generally, the neurologist in Norway seem to be under the impression the CCSVI has been disclaimed and is no longer an issues. Consequently, I have stopped discussing CCSVI with my neurologist.

In Norway we have a public health system, similar to the Canadian. MS "belongs" to the neurologists. Interventional radiologists are presently not involved in treating CCSVI. Thus, there are no treatment options in Norway. One private company arrange group tours to Frankfurt in Germany for treatment of CCSVI.

Personally, I would prefer to be treated by you. What has kept me from seeking treatment thus far is the long distance, lack of follow-up care in Norway and the fact that I must pay for any CCSVI treatment out of pocket. I might however change my mind.

On a final note, I want to thank you for all you have done and still do for CCSVI! I have learned so much from you and you have given me so much hope. I hope you continue this journey with us.
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Re: DrSclafani answers some questions

Postby drsclafani » Fri Dec 28, 2012 7:05 am

tilde wrote:Hi,

This is an answer from a long time lurker. I have been reading this forum daily from 2009, and I have read all the posts in this tread!!!

Now to your question:
I live in Norway, in the capital Oslo. I go regularily to see one of the most recognized neurologists in the country. I have tried discussing CCSVI with her, but it is quite difficult. She does not have any real knowledge of CCSVI, but is still a strong opponent to the theory (She appears to become rather angry whenever the subject arises). Generally, the neurologist in Norway seem to be under the impression the CCSVI has been disclaimed and is no longer an issues. Consequently, I have stopped discussing CCSVI with my neurologist.

In Norway we have a public health system, similar to the Canadian. MS "belongs" to the neurologists. Interventional radiologists are presently not involved in treating CCSVI. Thus, there are no treatment options in Norway. One private company arrange group tours to Frankfurt in Germany for treatment of CCSVI.

Personally, I would prefer to be treated by you. What has kept me from seeking treatment thus far is the long distance, lack of follow-up care in Norway and the fact that I must pay for any CCSVI treatment out of pocket. I might however change my mind.

On a final note, I want to thank you for all you have done and still do for CCSVI! I have learned so much from you and you have given me so much hope. I hope you continue this journey with us.


thanks tilde

very interesting report from norway.
it is for you that i stay here and continue to teach. I do hope that you will from time to time ask a question or make a comment.

happy new year

DrS
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