This Is MS Multiple Sclerosis Knowledge & Support Community

I'm so sorry about the repeated posts. It's pouring here. My computer kept giving me this message that I needed to debug it. I kept trying to send it, as you can see.

So sorry folks!
Laura

I think the debug message is some sort of glitch due to how long his thread has gotten. The price of popularity.....

Congrats on your procedure! Yes, sisters are great but I'd bet she's telling the truth.

dania wrote:Dr Sclafani I have a stent that was inserted last June. It has now become pinched and bent at one end. Dr Arata was unable to get past the bend. It is causing me considerable pain. Meds do not help. What can be done?Can it be removed?

this is unlikely to be removable. can you show a picture.

CCSVIhusband wrote:

drsclafani wrote:

WeWillBeatMS wrote:Dr. Sclafani,

Are the external jugular veins also tested for CCSVI? I know that they have not proven to be a regular problem but what about for the people like myself who have lost hearing in one ear? And at times even my good ear rings and pops and feels plugged like my bad one does all of the time.

WeWillBeatMS

The external jugular drains the face and scalp. I do not study these veins and i do not think these veins are the first line of action, perhaps they take on a greater potential when the internal jugular cannot be opened or has clotted off.

Sorry to bring this topic up again ... but a few questions:

Do the IJVs drain at all when upright? Or are they completely closed off?

Do the External JVs close off too when upright?

Just curious ...

the normal jugular vein does have flow in the upright position

tiredloulou wrote:my follow up was to take 1 aspirin daily...........
no mention or script of plavix or?

since the only follow up is my family dr.
should I be requesting to be placed on plavix?
due to stent
and procedure..

why did you get a stent? Who treated you?

i would treat patients with stents with anticoagulation for six months and an antiplatelet medication such as aspirin

linsand wrote:Hello Dr Sclafani, can you help answer some questions?
I know as a person with ccsvi/ms that the IJV"S are open (hopefully) when I'm lying flat (supine)and the vertebral venous system takes over when I'm standing.
So..... 1/3 of the day we may lie flat and be sleeping and the IJV's drain.
2/3 of the day we may be upright and the vertebral veins drain.
Q, Should the vertebral venous system be investigated then somehow, ie, with our neck above heart level?

Sorry but I have been reading some research from the site below

☛ http://www.descsite.nl/Frames.htm
☛ Publications
☛Academic Thesis
☛Janneke Gisolf ,2004.
This thesis has been prepared in the Cardiovascular Research Institute Amsterdam,
Chapter 2. Cerebral venous outflow pathway is posture dependent pg 13

Research Group on Physiology and Pathophysiology of the Circulation, at the department
of Physiology. The project was financed by Space Research Organization Netherlands

we are going after low lying fruit in the first year. the vertebral veins are small and treatment options are not really well outlined.

LauraV wrote:
Questions:
1. Does Coumidin have to be for 6 months?
2. Do I have to avoid certain neck movements?
3. Can these stents break?

And at the risk of sounding incredibly corny I'm going to say that you didn't just open a vein for me, Dr. S, you opened a door for me. If I don't get anything else, I now have hope...and possibilities. Everyone needs that. You truly are a "salvatore" ("savior" in Italian)

Mille grazie! Thank you so much!
Laura

there is no randomized trial comparing antithrombin therapy (coumadin) to antiplatelet therapy (aspirin or plavis or both) after stenting the jugular vein

but i think it safest to anticoagulate this thrombogenic stent for six months

the neck needs to move a lot. i do not know of any restrictions on neck movement

stents can fatigue and break

Dr Sclafani,

Three questions:

I am going to give my family in Michigan the Vimeo web address of the interview that you did back in October 2010 when you were still at SUNY so they can see and hear you a little bit before my procedure with you in June. That's a great interview which I really enjoyed and I don't know who you granted it to but thank you for doing it. Hopefully you can even do another one now that you have so much more experience. At the time of that interview you said that part of the theory of CCSVI is that the veins develop a leakage, and the leakage leads to inflammation. I have not heard of that leakage. #1)So in addition to the backflow of blood going back into the brain, is there blood that also leaks out of the veins? Maybe I misunderstood. Also in the interview you say that you are skeptical, and although I can't hear the interviewer's question, I believe you were saying that you were skeptical about treating CCSVI. #2)Do you still feel skeptical today? #3)Lastly, how many patients had you treated at the time of that interview? and how many today?

OK so the last question was kind of a two for one.

Thanks,

WeWillBeatMS

Hi Dr S, I've been looking over some of the pictures from Courtney's procedures and I'm not sure exactly what I'm looking at. Figured this would be an appropriate place for a little training.

Since Courtney's disability is primarily on her right side, I was looking closest at images of her rijv and her azygos, and was wondering if you could clarify what I'm looking at.

Thanks in advance!


Am I seeing collaterals in these two images? Have you noticed if collateral veins generally indicate any particular types of issues with valves or venous abnormalities?


Is the area pointed out a valvular stenosis? I'm really unsure how to interpret images of the azygos.


I wasn't sure what this image was, could you give a quick tip on what we're looking at here?

WeWillBeatMS wrote:Dr Sclafani,

Three questions:
#1)So in addition to the backflow of blood going back into the brain, is there blood that also leaks out of the veins? Maybe I misunderstood.

actually that theory remains only a theory. there are other components thgat have arisen, such as dysfunctional drainage of csf.
theories are interesting, but the bottom linle is much much more. ARe patientss improved based upon angioplasty.

Also in the interview you say that you are skeptical, and although I can't hear the interviewer's question, I believe you were saying that you were skeptical about treating CCSVI. #2)Do you still feel skeptical today?

I am no longer skeptical that something happens after angioplsty. it is not in all patients but sufficient numbers improve after angioplasty.

#3)Lastly, how many patients had you treated at the time of that interview? and how many today?

OK so the last question was kind of a two for one.

Thanks,

WeWillBeatMS

at the time of the interview i had treated about 30. I have now treated more than 150 patients now treat more than than ten patients per week. and my colleagues at aac have treated more than 600.

i still think that we do not have universal agreement on technique, but i am very comfortable with what i do now.

Johnnymac wrote:Hi Dr S, I've been looking over some of the pictures from Courtney's procedures and I'm not sure exactly what I'm looking at. Figured this would be an appropriate place for a little training.

Since Courtney's disability is primarily on her right side, I was looking closest at images of her rijv and her azygos, and was wondering if you could clarify what I'm looking at.

Thanks in advance!


Am I seeing collaterals in these two images? Have you noticed if collateral veins generally indicate any particular types of issues with valves or venous abnormalities?

tHESE ARE COLLATERALS. OBSTRUCTIONS ARE LIKELY FOUND BETWEEN THE UPPER AND LOWER PARTS OF THAT COLLATERAL.

Is the area pointed out a valvular stenosis? I'm really unsure how to interpret images of the azygos.

JOIN THE REST OF US. tHESE PROBLEMS ARE QUITE DIFFICULT TO DETECT ON VENOGRAPHY BECAUSE OF ARTEFACTS CAUSED BY THE BEATING HEART AND RESPIRATORY MOTION. IF COURTNEY HAD AZYGOUS PROBLEMS (MY HEAD CANNOT REMEMBER SO MANY FACTS ON ALL THE PATIENTS THEN THEY WOULD HAVE LIKELY BEEN DETECTED BY IVUS

I wasn't sure what this image was, could you give a quick tip on what we're looking at here?

[/QUOTE]

THIS IS AN ASCENDING LUMBAR VENOGRAM. LOOKS PRETTY GOOD

Hi Dr. Sclafani, hi guys
I'm the girl from Switzerland Dr. Sclafani had a late date on Friday the 13th (!!!) with (after Poland and Egypt...).
First of all, let me officially thank you again Dr. Sclafani ! It was a pleasure and honor to meet the man and absolutely the best medical decision I could make. I knew you would find something the others hadn't and boy, was I not dissapointed. Now, I haven't felt any improvements but the pain from the stent has already subsided a lot, which I seriously was worried about, so that's good news. The rest, time will tell...
If anyone has any questions, feel free to ask.

Thekla wrote: You mention a 'persistent immobile valve' in the azygous that you treated by angioplasty. Was that just not identified in her previous procedures?

Are you finding the sigmoid sinus cropping up more now? Somehow, the idea of a wire there really creeps me out.

It seems like there is so much to learn with this. I really hate having to be at the beginning of the learning process---I wonder what we'll know in another year or two.

Dr. Sclafani, I was wondering as well how my immobile valve in the Azygous could have been missed in Egypt ? Or do you mean by "persistent" that although it was recognised & ballooned, they just didn't "see" that it remained the same ?

Thekla, knowing that there was a wire "up there" in my head was beyond creepy Somehow the idea of a catheter going through my heart was totally ok, in my head, not so much... Go figure !

I have been wondering what we'll know in 1 year or two as well, especially since I've experienced the HUGE change between my 1st procedure in Poland in March 2010 and now.

drsclafani wrote:
JOIN THE REST OF US. tHESE PROBLEMS ARE QUITE DIFFICULT TO DETECT ON VENOGRAPHY BECAUSE OF ARTEFACTS CAUSED BY THE BEATING HEART AND RESPIRATORY MOTION. IF COURTNEY HAD AZYGOUS PROBLEMS (MY HEAD CANNOT REMEMBER SO MANY FACTS ON ALL THE PATIENTS THEN THEY WOULD HAVE LIKELY BEEN DETECTED BY IVUS

Thanks doc, I just got the report in the mail yesterday and you were right on. You mentioned Intravascular Ultrasound showed there was a valve that incompletely opened during the entire cardiac cycle. You also noted that her 'azygos vein was small'

Long term, I'm definitely concerned that Courtney's Azygos will be her biggest battle in regards to blood flow, and look forward to the day when there are good ways to monitor that vein in less invasive ways.

Her feet are still on fire, and after laying down for any period of time she feels really rested and upon getting up has improved balance and gait. As the day goes on, she loses those balance and gait improvements (and generally sees some spasticity return in the evenings). I see this as evidence her jugular veins are flowing properly again when she is sleeping/laying down. It also makes me wonder if there is still some issue with flow when upright.

girl69 wrote:
Dr. Sclafani, I was wondering as well how my immobile valve in the Azygous could have been missed in Egypt ? Or do you mean by "persistent" that although it was recognised & ballooned, they just didn't "see" that it remained the same ?

it is beyond weird to be getting followup of my patients on the internet. its probably more detailed followup than many other physicians get, but it is weird . while i am a risk taker, i realize how vulnerable i am. But i have jumped in and let things fall where they may.
But since today is the end of the world, maybe i should be more careful

Firstly, i am not sure that the area of the valves was the area that was treated by angioplasty. I dont think that valves are well seen by venography, especially in the azygous vein. Also, think that IVUS is the best diagnostic tool for seeing intraluminal abnormalites such as webs septums and valves. Venography only shows narrowing.

Thekla, knowing that there was a wire "up there" in my head was beyond creepy Somehow the idea of a catheter going through my heart was totally ok, in my head, not so much... Go figure !

are you saying that it is better to be heartfelt than go head over heels

I am still exploring this idea of imaging the dural sinuses as they are what leads into the jugular veins. i do have trepidation about it but have made some important discoveries. I will be discussing one on this wee'ks case of the week which should be posted tomorrow.

I hope you are learning from this format. I am really enjoying teaching by showing the cases.

S