DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

ccsvi

Postby zinamaria » Sun Oct 31, 2010 2:05 pm

Thanks Nancy! I'll try both emails.
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ccsvi

Postby zinamaria » Sun Oct 31, 2010 2:39 pm

Nancy, I tried the email you said Holly preferred and it came back to me....is it all correct? I did send one off the the one Cece mentioned and it has not come back so I hope it made it.
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Re: ccsvi

Postby nancymno » Sun Oct 31, 2010 3:04 pm

zinamaria wrote:Nancy, I tried the email you said Holly preferred and it came back to me....is it all correct? I did send one off the the one Cece mentioned and it has not come back so I hope it made it.
Zina


It's the address she gave me. ccsvi@aac-llc.com. I would suggest copy and paste as I'm not even sure what some of the characters are. I had no problem. It didn't come back.
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Postby drsclafani » Sun Oct 31, 2010 7:18 pm

NINOU wrote:Dear Dr Sclafani,
I'm living in France.
I would like to get your opinion on my CCSVI.
Please find here a picture : http://ivcc.fr/images/ccsvi_jcm.jpg

One doctor said I maybe have a TOS
Another didn't want to make the liberation treatment, because too risky, my stenosed vein was due to a congenital problem.

What do you think ? Should I try anyway ? Is there a high risk of re-stenose ?

In advance, thank you


All i see at that link is a single image of an MRvenogram. It does not show much of interest and does not visualize the more essential area where most of the stenoses occur

so it is not possible for me to advise you since i do not have sufficient informoation to help you. Neither the clinical information that would help me decide whether you should proceed to the next step. I generally do not use MRV to decide whether to perform venography. Of course, there are signs on MRVenograms that can point to ccsvi, but in your case the single image was insufficient.

What is the state of Doppler ultrasound in france? Are there centers that state that they perform the Zamboni protocol.

I look forward to hearing more about the state of ccsvi in france. perhaps then I can give you an opinion.

best

s
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Re: Answer to call for placebo-controlled studies

Postby drsclafani » Sun Oct 31, 2010 7:24 pm

Squeakycat wrote:Dr. S, in your opinion, would a detailed case study of a case such as this one in which MS symptoms wax and wane with stent thrombosis be persuasive in answering the question of placebo effect of venoplasty in treating CCSVI or is the only way to answer it a placebo-controlled study?


mila77 wrote:Hi guys,

Maybe some of you remember the story of my CCSVI treatment, but for those who dosnt I will tell it again.

My MS started 12 years ago at the age of 18 with optic neuritis in the right eye. I was not diagnosed at that time and I had next 10 years of my life symptom free, then 2 years ago I had my second mild relapse - some numb hand and feet but nothing extreme. My MS was developing quite slowly.

4 months ago in April I had my CCSVI Treatment done in Euromedic clinic in Katowice (Dr Simka team). I had no symptoms before procedure and I did it as a precaution - to avoid future relapses.

I left the operating room with slightly numb right hand and it stayed like that for a long time. Then I started developing some numbness in my right leg. So I went back after 2 months for a check-up with dr Simka who after 10 min ultrasound assured me that everything is ok with my blood flow and there are no angiologic reasons for my numbness.

So I came back to Warsaw and decided to wait and give it a time. In the meantime I developed another numbness in the torso on both sides and in both legs. After a month it was going away and another symptom was starting.

So I decided not to wait any longer and called AMEDS clinic to ask for the second opinion. Yesterday I went to their clinic for a battery of tests (ultrasound, MRI, MRV, EKG, Blood tests, Neurologic exam). And today I went there for the results. It turned out that I developed thrombosis in the stent area. Originally the stent had 14 mm diameter and now it is just 4 mm wide and my MRI showed 3 active leasions. I will be on blood thinners starting tomorrow and after a month we will repeat the ultrasound and see if it is posspible to reballoon the stent. Right now it is too dangerous to do it.

I would like to express here my grattitude to the AMEDS team, especially dr Agnieszka who took great care of me and had the time to sit and answer all my questions, discuss options for treatment etc etc.

All the tests at AMEDS were executed thoroughly and all the results were given back to me. To the contrary I do not have my 10 min Ultrasound results from Euromedic so the doc at AMEDS did not have anything to compare it. I realize that docs From Katowice have more experience bec the executed more treatments so far but when I was there I felt like i was in a factory "one done, next please".

Maybe it sounds like AMEDS advertisement but it isn't. Those are just my impressions comparing those 2 Polish clinics.

I will update u about my thrombosis development in this plot later on.
Thanks for listening ;-)


catmandu
such stories provide some suggestive evidence, but those who do not want to believe surely will not accept this as proof. However between absolute truth and where we are now, lies a road that needs such evidence. Cohort studies, case reports, retrospective reviews and summaries will h elp determine best practice and can give evidence of merit

It would be difficult to put such a paper together without imaging, good history taking, review of personal patient charts, etc. It would be an important step
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Postby drsclafani » Sun Oct 31, 2010 7:29 pm

fogdweller wrote:Can a properly done doppler distinguish between restenosis caused by structural renarrowing and thrombosis? How is thrombosis caused restenosis treated?


Ultrasound of the jugular vein is a common method of diagnosing thrombosis of this vein. We perform these studies all the time. No special techniques are necessary.

The vein that has flow is compressible. So when you push down on the vein, the walls come together and the vein is narrowed. When the vein has thrombosis, it is filled with echogenic material and the vein is not compressible.

Restenosis is effectively a narrowing of the vein. it results in signs of ccsvi



Techniques attempted to recanalize the thrombosed vein include thrombolytic agents such as tPA to dissolve clot and/or mechanical devices that pull clot out. Some doctors put stents in there as well. Surgeons can pull clot out as well.
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Postby Cece » Sun Oct 31, 2010 8:56 pm

mila77 wrote:I left the operating room with slightly numb right hand and it stayed like that for a long time.

Dr. Sclafani, this is something I've noticed in a handful of accounts. A patient experiences numbness of the hand or arm that begins during the procedure and persists. It's been in at least three reports, I could find them with a good search. I suspect it'll show up in the registry data, but with what we have to go on now, what could cause this?

It must be vascular, not neurological, because of the timing? MS symptoms come and go, it could be a coincidence, but there is the similarity in different reports: new symptom, numbness in hand/arm, begins immediately in the OR, and persists.
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Postby NZer1 » Sun Oct 31, 2010 10:47 pm

I have noticed that too Cece, change in flow dynamics could be changing the cushioning of the brain or cord?
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In France

Postby NINOU » Mon Nov 01, 2010 12:49 am

drsclafani wrote:What is the state of Doppler ultrasound in france? Are there centers that state that they perform the Zamboni protocol.

I look forward to hearing more about the state of ccsvi in france. perhaps then I can give you an opinion.

best

s


Dr Sclafani, thank you for your answer.
In France, as I know, only one center (not Dr Franceschi) is performing Doppler with Zamboni protocole in Paris. We don't know really what is doing Dr Franschesci at this moment.
About liberation treatment, only one doctor is doing some veins dilatation, with restrictive conditions (only "easy" cases).
Several MS patients were obliged to go in Poland, Belgium or Bulgarie to get the liberation treatment and needed to return there to make controls.

In general, CCSVI is ignored (or discredited) in France by most of neurologists, radiologists and vascular surgeons. Leitmotiv is : urgent to wait.

Most of patients are a little bit lost without any serious advices, that's why I asked you your opinion on my MRvenogram, the only exam I could obtain.

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Postby drsclafani » Mon Nov 01, 2010 5:41 am

Cece wrote:
mila77 wrote:I left the operating room with slightly numb right hand and it stayed like that for a long time.

Dr. Sclafani, this is something I've noticed in a handful of accounts. A patient experiences numbness of the hand or arm that begins during the procedure and persists. It's been in at least three reports, I could find them with a good search. I suspect it'll show up in the registry data, but with what we have to go on now, what could cause this?

It must be vascular, not neurological, because of the timing? MS symptoms come and go, it could be a coincidence, but there is the similarity in different reports: new symptom, numbness in hand/arm, begins immediately in the OR, and persists.


I wonder whether it could be due to the stretching of the tissues around the veins in the neck. perhaps the nerves are being stretched. Some of those nerves go to the hand and arm. If the angioplasty is high up, then the accessory spinal nerve could be stretched and this could lead to weakness of the shoulder. Other nerves that could be stretched include the vagus nerve and if high enough, that could cause hoarseness too.
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Postby NZer1 » Mon Nov 01, 2010 12:48 pm

Dr, Joan Beal has been posting about blood testing lately can you talk to us about what we need to be aware of when choosing a treatment provider and what we need to be having done for the follow up period/time?
Thanks Nigel.

Quote;http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/please-read/454425162210
Patients who have angioplasty need a very specific blood thinning regimen tailored to them, and this needs to be followed by a doctor who can test INR and PT (coagulation numbers) Many people have angioplasty and have no idea they have hypercoagulation before being treated....this is a terrible problem.
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Postby North52 » Mon Nov 01, 2010 3:00 pm

drsclafani wrote:
Cece wrote:
mila77 wrote:I left the operating room with slightly numb right hand and it stayed like that for a long time.

Dr. Sclafani, this is something I've noticed in a handful of accounts. A patient experiences numbness of the hand or arm that begins during the procedure and persists. It's been in at least three reports, I could find them with a good search. I suspect it'll show up in the registry data, but with what we have to go on now, what could cause this?

It must be vascular, not neurological, because of the timing? MS symptoms come and go, it could be a coincidence, but there is the similarity in different reports: new symptom, numbness in hand/arm, begins immediately in the OR, and persists.


I wonder whether it could be due to the stretching of the tissues around the veins in the neck. perhaps the nerves are being stretched. Some of those nerves go to the hand and arm. If the angioplasty is high up, then the accessory spinal nerve could be stretched and this could lead to weakness of the shoulder. Other nerves that could be stretched include the vagus nerve and if high enough, that could cause hoarseness too.


Dear Dr. Sclafani,


I was one of those patients that developed numbness of the fingertips of both hands immediately following the procedure. These symptoms developed and persisted despite clear improvements with my gait following balloon angioplasty of my azygous. The numb fingers were a completely new symptom for me. I had spent lots of time wondering why this happened and would like to propose what I think is a explanation.

With balloon angioplasty of a major obstruction in one of the venous outflow routes from the CNS, the obstruction is relieved on that side and there is more flow down that once obstructed vein. This increased flow on the ballooned side must somehow be compensated for by decreased blood flow on the other the other side (or other outflow route). I think this can be supported by hemodynamic principals. It is this decreased flow on the other side that I believe may cause these new or aggravated symptoms. I suspect this type of problem is made worse if there is residual or unrecognized stenosis on the "unaffected side". This was my situation. I had my azygous opened up but ballooning of the 100% occlusion of my brachiocephalic vein was not even attempted and left as it was.

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Postby Cece » Mon Nov 01, 2010 3:20 pm

A stretched nerve, that could be it. It could be a risk that doesn't show up in nonMS jugular venoplasty patients because our nerve conduction is already centrally compromised, so the effect of a peripheral injury is magnified.
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Postby Johnson » Mon Nov 01, 2010 4:46 pm

drsclafani wrote:
Cece wrote:
mila77 wrote:...

I wonder whether it could be due to the stretching of the tissues around the veins in the neck. perhaps the nerves are being stretched. Some of those nerves go to the hand and arm. If the angioplasty is high up, then the accessory spinal nerve could be stretched and this could lead to weakness of the shoulder. Other nerves that could be stretched include the vagus nerve and if high enough, that could cause hoarseness too.


That was an interesting side effect of both of my procedures; my voice went from a "radio voice" to an "orchestra voice" for a couple of days. It was not hoarse though. I liked it, and thought to record it the second time.
My name is not really Johnson. MSed up since 1993
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Postby NZer1 » Mon Nov 01, 2010 6:59 pm

Is the arm numbness/tingling on the same side as the angio was performed?
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