DrSclafani answers some questions

[hwebb]

Dr S,

fellow TIMS participant "ikulo" found this interesting paper. Just recreating the reference in your thread, as you may have thoughts on it:

Hey there,

Found this article that discusses a non-invasive measurement of blood flow through the Azygous Vein.

Quote:

J Hepatol. 1995 Apr;22(4):399-403.
Non-invasive measurement of azygos venous blood flow using magnetic resonance.

Lomas DJ, Hayball MP, Jones DP, Sims C, Allison ME, Alexander GJ.

Department of Radiology, Addenbrooke's Hospital, Cambridge, UK.
Abstract

Monitoring treatment efficacy in patients with portal venous hypertension has been limited by the difficulty of direct or indirect assessment of portal vein pressure. The majority of currently available haemodynamic tests, such as hepatic vein wedge pressure or azygos vein flow measurement by thermodilution catheter, are invasive which has restricted their application. We describe a non-invasive cine phase contrast magnetic resonance technique for quantitative measurements of bulk volume flow and for demonstrating flow changes during the cardiac cycle in the azygos vein. The technique was used to analyse the azygos vein flow in seven adult volunteers and five patients with biopsy-confirmed chronic liver disease, portal hypertension and endoscopically proven oesophageal varices. In the volunteers the mean volume flow rates varied between 81 and 241 ml/min with a mean for the group of 171 ml/min. The patients had a significantly higher mean volume flow rate of 628 ml/min (p < 0.01), with a range of 339 to 945 ml/min. These preliminary results suggest that cine phase contrast magnetic resonance angiography is a practical non-invasive method for measuring absolute azygos vein flow, and may provide a non-invasive method of monitoring portal hypertension.
http://www.ncbi.nlm.nih.gov/pubmed/7665858

Could this be a way of diagnosing/screening the Azygous vein without doing a Venogram? Thoughts?

[L]

I had a CT scan (and an MRV) but CT uses radiation and at quite high doses I think.

I have had two of them (again, and I don't want to moan too much, both unnecessary) and since reading about the radiation levels I am loathe to have another..

[fogdweller]

I fully empathize with patients who fear progression and want this immediately. If I were an 'MSer I would be looking for someone to treat me. However as trials get up and going, patients have some responsiblity to participate in these. Just as Zamboni's patients chose to participate, not only for their own benefit but for that of all MSers, so too should you join those trial to prove the points about which you feel so passionate .

I agree, in principle, and have participated in trials in the past, even ones I was pretty sure would not work. I even finished up a three year study that was having some negative effects on me when I knew that it was not helping in order to help have clean data for the study.

However, I am 57, have been diagnosed for 35 years, and the last 5 years have begun progressing more rapidly. I have PPMS, not RRMS, so no drug helps at all. Because of these factors I likely will not meet the inclusiion criteria for a trial, so I am not sure it makes much sense or helps fulfill a duty to stand in line to try to get in a trial that that probably won't take me, probably will take 2-3 years to complete, and will probably take 2-3 years before any data is analyzed and available.

I agree we are an army and hope to help but waiting for treatment may not make sense.

[JCB]

Dr. Sclafani,

I was diagnosed with Diabetes Mellitus in 1982, no renal malfunction to date. I currently have MRI's w/ contrasting agent. Would this still put me in the Contraindicated category?

PPMS 11/07

[nancymno]

Dr. Sclafani - This is the first time I have posted. I have been following your thread since early April when I also contacted Holly to be put on your waiting list. Because my disability score has moved approximately 2 - 3 points (that would be upward) in the last 2 years and I am nearing or at a 6, I feel I don't have the time to get through waiting lists. By the time you or someone else get to me, I could be at 8.5 and ineligible. You are 700 miles from my home and it occurred to me I have never tried contacting an interventional radiologist in my own community. I gave it a shot and I have an appointment for a consultation next week. I am told by his nurse he has performed many balloon therapies on the jugular veins and stenting if necessary for other reasons. If he should be agreeable to doing this procedure (probably a big if), what does he need to know that might be different regarding an MS patient? Should I even take a chance on letting him do the procedure? (I have read your posts and have grown quite comfortable with the knowledge you have attained in this area. You have done several procedures and seem to have gained more and more expertise as you have done them). Is there anything special he needs to know about performing the procedure as it relates to MS? It could be he will not be receptive to the whole idea and I will remain on your waiting list, but I would like to be prepared.

[fogdweller]

It may be burried somewhere in the previous 89 pages, but how do I get on Dr. S's waiting list??

I think I am on a list at Stanford, but would like to get on as many lists as possible since I may be ineligable for some studies , and get in others only after a very long time.

[drsclafani]

Hello Dr Sclafani

I'm on your list, perhaps things will be a bit tricky though as MRV is contraindicated with me (unless it is less powerful than MRI) because of the inch long end of a defibrillator wire in my heart. The defibrillator itself was explanted as it was quite unnecessary, placed there by an over zealous cardiologist.

Apparently, according to Dr Halperin at Johns Hopkins who has conducted a study on the subject of MRI and pacemakers/defibrillators, and who kindly responded to my enquiries and the x ray of me that I sent him, told me that such a short lead would heat far more than the whole defibrillator intact and would not allow for an MRI scan.

So my question now is, aside from the strength of an MRI being the same as an MRV or not, A doppler scan, although not as useful as an MRV, is still very helpful in many cases, no?

Thanks!

I would just skip the MRvenogram and go right to the Gold Standard after a US
any risk is too great since i believe you have to have the Gold Standard under all circumstances

[drsclafani]

It may be burried somewhere in the previous 89 pages, but how do I get on Dr. S's waiting list??

I think I am on a list at Stanford, but would like to get on as many lists as possible since I may be ineligable for some studies , and get in others only after a very long time.

i PMed you but might as well repeat for anyone else interested

email holly at CCSVILiberation@gmail.com

[drsclafani]

Dr. Sclafani - This is the first time I have posted. I have been following your thread since early April when I also contacted Holly to be put on your waiting list. Because my disability score has moved approximately 2 - 3 points (that would be upward) in the last 2 years and I am nearing or at a 6, I feel I don't have the time to get through waiting lists. By the time you or someone else get to me, I could be at 8.5 and ineligible. You are 700 miles from my home and it occurred to me I have never tried contacting an interventional radiologist in my own community. I gave it a shot and I have an appointment for a consultation next week. I am told by his nurse he has performed many balloon therapies on the jugular veins and stenting if necessary for other reasons. If he should be agreeable to doing this procedure (probably a big if), what does he need to know that might be different regarding an MS patient? Should I even take a chance on letting him do the procedure? (I have read your posts and have grown quite comfortable with the knowledge you have attained in this area. You have done several procedures and seem to have gained more and more expertise as you have done them). Is there anything special he needs to know about performing the procedure as it relates to MS? It could be he will not be receptive to the whole idea and I will remain on your waiting list, but I would like to be prepared.

a good way to upset a doctor is to tell him how to do things based on another doctor, whom he doesnt know, telling him without his asking.

If a doctor asks, i will tell

[drsclafani]

Dr. Sclafani,

I was diagnosed with Diabetes Mellitus in 1982, no renal malfunction to date. I currently have MRI's w/ contrasting agent. Would this still put me in the Contraindicated category?

PPMS 11/07

The contrast agents we are worrying about are two

MRI contrast is a risk in patients with renal failure for a rare fibrosing disorder
Venogram contrast is a risk for paitents with renal failure for worsening kidney failure

patients with diabetes and elevations of creatinine in the blood are at risk. just having diabetes is not a contraindication. I routinely do some hydration schemes that seem to protect the kidneys in diabetics.

as far as i am concerned, i am not concerned about your diabetes

[drsclafani]

I fully empathize with patients who fear progression and want this immediately. If I were an 'MSer I would be looking for someone to treat me. However as trials get up and going, patients have some responsiblity to participate in these. Just as Zamboni's patients chose to participate, not only for their own benefit but for that of all MSers, so too should you join those trial to prove the points about which you feel so passionate .

I agree, in principle, and have participated in trials in the past, even ones I was pretty sure would not work. I even finished up a three year study that was having some negative effects on me when I knew that it was not helping in order to help have clean data for the study.

However, I am 57, have been diagnosed for 35 years, and the last 5 years have begun progressing more rapidly. I have PPMS, not RRMS, so no drug helps at all. Because of these factors I likely will not meet the inclusiion criteria for a trial, so I am not sure it makes much sense or helps fulfill a duty to stand in line to try to get in a trial that that probably won't take me, probably will take 2-3 years to complete, and will probably take 2-3 years before any data is analyzed and available.

I agree we are an army and hope to help but waiting for treatment may not make sense.

i can see that. But lets not exclude PPMS because of the results in ten patients.

this is a tough thing. perhaps part way into the safety trial we can break out the ppms patients and treat on compassionate grounds

[drsclafani]

Dr S,

fellow TIMS participant "ikulo" found this interesting paper. Just recreating the reference in your thread, as you may have thoughts on it:

Hey there,

Found this article that discusses a non-invasive measurement of blood flow through the Azygous Vein.

Quote:

J Hepatol. 1995 Apr;22(4):399-403.
Non-invasive measurement of azygos venous blood flow using magnetic resonance.

Lomas DJ, Hayball MP, Jones DP, Sims C, Allison ME, Alexander GJ.

Department of Radiology, Addenbrooke's Hospital, Cambridge, UK.
Abstract

Monitoring treatment efficacy in patients with portal venous hypertension has been limited by the difficulty of direct or indirect assessment of portal vein pressure. The majority of currently available haemodynamic tests, such as hepatic vein wedge pressure or azygos vein flow measurement by thermodilution catheter, are invasive which has restricted their application. We describe a non-invasive cine phase contrast magnetic resonance technique for quantitative measurements of bulk volume flow and for demonstrating flow changes during the cardiac cycle in the azygos vein. The technique was used to analyse the azygos vein flow in seven adult volunteers and five patients with biopsy-confirmed chronic liver disease, portal hypertension and endoscopically proven oesophageal varices. In the volunteers the mean volume flow rates varied between 81 and 241 ml/min with a mean for the group of 171 ml/min. The patients had a significantly higher mean volume flow rate of 628 ml/min (p < 0.01), with a range of 339 to 945 ml/min. These preliminary results suggest that cine phase contrast magnetic resonance angiography is a practical non-invasive method for measuring absolute azygos vein flow, and may provide a non-invasive method of monitoring portal hypertension.
http://www.ncbi.nlm.nih.gov/pubmed/7665858

Could this be a way of diagnosing/screening the Azygous vein without doing a Venogram? Thoughts?

I am an angiographer and I have no problem doing a venogram. probably would take less time and would also treat.

if i had MS, the one test I would insist upon would be a venogram because it is the only one that could be used for treatment. It is safe, fast and definitive

[drsclafani]

I had a CT scan (and an MRV) but CT uses radiation and at quite high doses I think.

I have had two of them (again, and I don't want to moan too much, both unnecessary) and since reading about the radiation levels I am loathe to have another..

ALARA

As low as reasonably achievable. that is the mantra. Radiation has no advantage if you do not need it.

you have to need the radiation becasue that is the test that tells you what want to know
you have to have no less invasive methods of diagnosis available that is at least nearly as accurate
you have to use good equipment that reduces radiation
You have to restrict the xray so only the area that needs it gets it
you have to use the lowest dose possible to render a diagnostic image

you have to look at the risks and benefits of the xray. using xrays to make sure your shoes fit properly, as was done in the 1950s, really doesnt have the benefit
mammograms radiate the breasts but help diagnose cancer that would reduce life expectancy

if you are concerned about cancer, oncogenisis is likely to take a long time (20-30 years) to develop. Obviously not a critical issue in someone who has a life expectancy of 20-30 years
depends also on the tissue being irradiated. thyroid is radiosensitive, children are radiosensitive

further while risk of diagnostic xray is not likely dose related, risks are fairly low and can only be measured on populations, not on individuals

So when I had abdominal pain and got a CT scan that revealed my uric acid kidney stones, it allowed me to learn i had early gout years before it would have destroyed my joints and kidneys.....CT saved my life

a bit rambling, i apologize, but i am tired


then you need to have someone knowledgable read it properly
ng what ails you

[Johnson]

Hi Doc.,

You wrote of patients having a responsibility to participate in trials, and I fully agree. I put my name in for CCSVI trials (at least, tried to) at a number of places (UBC, McMaster, Saskatoon), but I also signed up with Dr. Simka, and will be having my time with his team in three weeks. I cannot wait for trials, and such. My sig. says "RRMS" sine 1993, but I just haven't had the heart to write "& SPMS since 2009".

Besides that blah, blah, do you feel that what Euromedic is doing has any data value over-all in relation to studies? Would it have any value, or might there be any place for a liberated person to participate in a study? Or would that just complicate the design and execution of any study?

[drsclafani]

Dr. Sclafani - This is the first time I have posted. I have been following your thread since early April when I also contacted Holly to be put on your waiting list. Because my disability score has moved approximately 2 - 3 points (that would be upward) in the last 2 years and I am nearing or at a 6, I feel I don't have the time to get through waiting lists. By the time you or someone else get to me, I could be at 8.5 and ineligible. You are 700 miles from my home and it occurred to me I have never tried contacting an interventional radiologist in my own community. I gave it a shot and I have an appointment for a consultation next week. I am told by his nurse he has performed many balloon therapies on the jugular veins and stenting if necessary for other reasons. If he should be agreeable to doing this procedure (probably a big if), what does he need to know that might be different regarding an MS patient? Should I even take a chance on letting him do the procedure? (I have read your posts and have grown quite comfortable with the knowledge you have attained in this area. You have done several procedures and seem to have gained more and more expertise as you have done them). Is there anything special he needs to know about performing the procedure as it relates to MS? It could be he will not be receptive to the whole idea and I will remain on your waiting list, but I would like to be prepared.

please find out what problems he was treating by angioplasty of the jugular vein that wasnt related to MS. Those cases are few and far between in my practice