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Hello Cece,
A faster test would be to use the IVUS after ballooning. Leave the IVUS in place and change the patient's position by moving/tilting the bed. Simply record US changes in different positions. Such observations from Dr C support my thinking- no flying after the procedure. 10 hours upright (Poland to Canada in economy) would help the veins stick together before DVT mechanisms get to work.
Thanks for sharing, is Dr C going to write a letter on this ?

MarkW

I don't know if he'll write a letter or not. He has shared the idea here before. When you mention DVT mechanisms, if that means the anticoagulants, that would not matter one way or another for this type of stickiness. Anticoagulants can work very quickly, but they deter clotting, which isn't what this is. But yes flying soon after the procedure would mean prolonged uprightness, which could be bad. Just standing up would lead the jugulars to naturally collapse, and if they're sticky, they might stick and stay that way.

It's just another idea, but it's based on his prior experience with veins' stickiness, and it could help explain some of the restenosis (and offers a route to prevent this particular type of restenosis, if bedrest is effective).

By changing the patient's position and looking with IVUS, would it be to try and get the veins to stick together? That is not in the patient's interests, even if it is informative.

This is testable if anyone is able to lie down for a week after the procedure! Or even the first few days.
I certainly failed to do this....

More tidbits from our discussion during my appt:

Dr. Cumming has grown more conservative than he was initially. He does not go over 5 atm for pressures. (Compare this to my procedure in Brooklyn two months ago, where a still relatively mild 8 atm was used, and the tactics of last fall, where pressures over 20 were in common use.)

When patients restenose, they want more aggressive treatment the second time. This may be the exactly wrong thing to do.

He cares for his patients. He is not used to seeing the same patients every six months, and the same problem has cropped up again. There are people with double occlusions (both jugulars lost). Even if you can get an occlusion open, it is not easy to keep it open.

Personally I pay attention to how long a doctor's longest procedure is, as a sign of just how far he'll go for a patient. Dr. Cumming mentioned a five-hour procedure, with some real challenges. Five hours is a long time and a lot of effort.

He uses IVUS on every patient. He would not treat CCSVI without IVUS. One interesting thing is that, since using IVUS, he has been treating less often in the azygous. What looks like a stenosis on flouroscopy turns out not to be a stenosis on IVUS. This prevents unnecessary treatment, which can lead to complications. (It's interesting that IVUS helps identify what is a stenosis in the jugulars and what is not a stenosis in the azygous.)

He is examining the dural sinuses on every patient, unless the patient requests that he does not. If the dural sinuses are really messed up, such as from a prenatal thrombosis, then the outflow might be very abnormal starting within the cranium, and it is uncertain whether treating any obstruction down at the level of the jugular valves will be of any benefit, since the extreme abnormalities within the dural sinuses cannot be treated. (Whether or not to check the dural sinuses is a matter of some debate. I was glad to have it done during my second procedure, because it laid to rest any concerns, but if it increases the risk of subdural hematoma, then maybe not.)

My own concern that we may see some narrowing in my right jugular, since it is now 7 months out from treatment, would seem to be a valid concern. My other concern is that my left jugular would close up again, since it had the gall to do so once already. Right now they both look good on doppler ultrasound. If I experience a loss of improvements, then he would recommend another procedure regardless of what's seen on ultrasound, since it is an imperfect imaging tool. I didn't get a chance to ask him what he thought about increased risks from multiple procedures. Or maybe if the warnings (from Dr. Siskin and Dr. Arata) about repeat procedures being less effective could be because of damage done to the veins in one of the first procedures that causes the need for multiple procedures.

He also only treats in the lower jugular. He does not treat the up-high jugular stenoses. These are real stenoses but in his experience, they do not respond well to treating. They may be due to external compressions. You can balloon and they can go immediately right back to the way they were. Other interventions like stents can lead to occlusions and the patient can end up worse than they started.

I am of the opinion that the veins in question are not so much " glued " together

........as they are - WRUNG TOGETHER - .

You have no idea how powerful this effect is . The blood flow pressure exiting the brain, which I see as almost nil , is no match or powerful enough to open up the wrung blood vessel

I think there is a need for a separate blood fluid [ and csf ] thread here on TIMS .

There is as much if not more thought evoking concepts in the CCSVI discovery than is being discussed.

Like Dr.Zamboni has told us ......... it's all about FLOW.



Mr.Success

Damage by balloons depends on many factors. I can think of these:
1- Position of balloon (against valve or vein wall)
2- Size of balloon compared to size of vein/valve
3- Pressure of inflation
4- Duration of inflation
5- Repetition of inflations
With at least five variables the technique used by the interventionalist/surgeon may produce very different results and amount of damage. Until there is a standardised procedure I recommend a conservative approach. I realise this is easy for me to say as having a third procedure (1=Athens, 2=Brooklyn) is financially feasible if it is required, which is not true for many pwMS.

DVT (deep vein thrombosis) just happen in some people after flying. The reasons are not well understood. I suggest a low risk approach (no flying after procedure) as we are all different.

MarkW

I had the CCSVI procedure on September 13, 2011. I came back to Canada. I feel no improvement. I still have numbness in legs, some difficulty walking, daily fever of 99.7 - 100.2 from about 9 a.m. to 7.p.m. I have daily fever and this diagnosis since January 2006, but in the afternoon only. I had lots of pain in my pelvic (I had May Thurner's). I feel terrible and I am depressed that I am part of the 1/3 with nothing. I wake up every day hoping to feel better. My neuro wants me to go on Rebif (prior to procedure, which she disagreed with completely) I have been thinking maybe LDN. So depressing to actually feel worse than before.

lkellogg,

Give yourself some time to feel better. Your system is now adjusting to a "new normal". My doctor said to give it a full six months.

Have you tried sleeping on an incline? It's something cheap that you can do right now that will help your bloodflow.

lkellogg wrote:I had the CCSVI procedure on September 13, 2011. I came back to Canada. I feel no improvement. I still have numbness in legs, some difficulty walking, daily fever of 99.7 - 100.2 from about 9 a.m. to 7.p.m. I have daily fever and this diagnosis since January 2006, but in the afternoon only. I had lots of pain in my pelvic (I had May Thurner's). I feel terrible and I am depressed that I am part of the 1/3 with nothing. I wake up every day hoping to feel better. My neuro wants me to go on Rebif (prior to procedure, which she disagreed with completely) I have been thinking maybe LDN. So depressing to actually feel worse than before.

Really sorry to hear this, lkellogg. LDN and Rebif are both good, whichever way you go there.

I hear you lkellogg. I too am much worse. It is the pits. About your fever, I do not have one but it feels like a do. I feel like my head and neck are so hot. As if my brain is on a low boil. I noticed I am hotter as the day progresses and I am at my worst late afternoon early evening. Normal body temperature is lowest in the morning and rises during the day and decreases in the evening. That is why your body temperature is up in the afternoon. I drink water with ice chips and within minutes I am stronger.

Rosegirl wrote:lkellogg,

Give yourself some time to feel better. Your system is now adjusting to a "new normal". My doctor said to give it a full six months.

Have you tried sleeping on an incline? It's something cheap that you can do right now that will help your bloodflow.

Sleeping on an incline would promote blood flow through the vertebral veins instead of the jugulars. There have been recommendations against sleeping on an incline post CCSVI treatment.


NHE

Dr. Cumming, any thoughts or observations from the presentations and conversations at SIR?
Congrats on the workshop.

Hi All,

New contact info for me

Michael Cumming, MD, MBA, FRCPC
Director Vascular Services
Center for Diagnostic Imaging
5775 Wayzata Blvd, Ste 190
St. Louis Park, MN 55416

Front Office 952-738-4386

www.cdivascular.com

Cece, would you please update the first post in this thread?

Thank you.

Updated it!
You are continuing to treat patients for CCSVI, then? Is testing done at the new clinic with treating done at the hospital?
It has been awhile! How has your approach to treating evolved?
If you attended SIR, was the chatter generally negative or neutral or positive in regards to CCSVI?
Did you hear it's supposed to snow again this week? I cannot believe the weather this spring, it's been brutal.

Cece wrote:Updated it!
You are continuing to treat patients for CCSVI, then? Is testing done at the new clinic with treating done at the hospital?
It has been awhile! How has your approach to treating evolved?
If you attended SIR, was the chatter generally negative or neutral or positive in regards to CCSVI?
Did you hear it's supposed to snow again this week? I cannot believe the weather this spring, it's been brutal.

Hi, yes, I am still treating CCSVI, but at our new clinic, not hospital. Approach is mostly unchanged and similar to Sal. At SIR, Sal, Hector and Bulent and I did the CCSVI workshops. Nothing really new that you don't already know about. We just need a good trial done by operators with significant experience.

Yup, its been a brutal winter

I had a long-term follow-up appointment today. Very nice new clinic with easy freeway access. One of the first things his nurse asked was if my renal vein had been checked during my angioplasties two years ago. Yes, it had, but other than Dr. Sclafani and Dr. Cumming, I don't think any other doctors are interrogating the renal vein, and it warrants interrogating, so it was good to be asked about that.