This Is MS Multiple Sclerosis Community: Knowledge & Support

Thanks Cece the question was from the angle why in NZ do we have to use two techinians to look at the two areas which are in the case of CCSVI interrelated. The loss of knowledge / lack of knowledge compounds when there are more specialties, here the medicos are behind the eight ball and have huge amounts of catching up to do. The frustration compounds when we have the equipment but not the skills or people watching trends in their speciality. There are times when PwMS have more info on CCSVI and have read more about the technicalities and challenges.

Good day!
Supposition posed..
Say a person...
1) easily bruises - what/where the heck did I?
2) easily ruptures veins in their fingers ie/ carrying, say a plastic grocery bag, in the crook of a knuckle joint causing a rupture - instant swelling/purple finger that just as quickly resolves
3) has well distributed tiny superficial blood spots "Petechiae" capillary hemmhorage
... all signs of a tendency to easily rupture blood vessels?

Now.. enter cerebrospinal.. could this tendency to rupture these small vessels, with little cause, extend to these areas? resulting in small ruptures, resulting in blood deposits requiring immuno cleanup?
Could this be a possible explanation for those without clear indicators of venous insufficiency?
My thougths are drawn from personal experience and from comments on TiMS regarding.. "my symptoms first appeared after neck/back trauma" and "my symptoms first appeared after a very stressful time" (hypertension)

Lay 'Lay'dy Lay

Thank you for your time...

I had that "little ball" at my incision site too - about half the size of a pea, and it resolved over a matter of weeks. As yours has gone from the size of a grape to the size of a pea, I would bet that it will resolve completely in time. My bruise at the incision site was only about the size of a dime, if that.

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My name is not really Johnson. MSed up since 1993

Yes, it is. Please get to the bottom of the heat sensitivity thing in a formal way, so that people can know what it is and what it is not. My current belief is that it is a problem with drainage of the thyroid gland. When it cannot drain hotter blood out it cannot get cool. So I find cooling my thyroid directly is a short-term fix. Recently it has been speculated that something else is wrong in the drainage from within the brain. I don't know about that but of all my symptoms, left leg and foot paralysis and heat sensitivity are the most fixed and unchanging. To know more about why these happen is primary for me.

Next, I wonder why my task-switching is so slow and laboured. I have also heard this described as slow processing of new data. It, as well as all my other symptoms, seem to be heat-sensitive. So that above 73 degrees, I really fall apart. It's quite dramatic.

Thanks.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I would have to echo 1Eye here. Somewhere, sometime this is going to be necessary. To identify the specific areas that cause these symptoms. My interest in the Dr. Flanagan views on CCSVI and its effects such as Heat or LHermitte's are good examples on blood flow that could also be within the spinal cord and effected in tandem with cord compression or flow restrictions in the cord.
There might be links with the blood flow and the CSF flow . And there could also be vascular and external forces involved at the same time.
It is too much of a co-incidence that chiropractics can give logical explanations for our symptoms and vascular flow improvements achieve improvements.
I'm not sure I am making sense yet with my thinking, I believe its too much of a commonality that the same symptoms can happen with the two specialities having positive outcomes through different treatment types 'some' of the time, but for unexplained reasons not all the time.

Yes, thank you. I thought there might be a hint of terminology implied by these words. I have been criticized (by doctors!) for using the term stenosis so I have kind of avoided the issue and called everything a narrowing. I think this is a very correct opportunity for neologisms (for both). I also think we need a new word for blockage, also commonly interchanged with stenosis. In fact, go nuts and invent words for all the weirdnesses you see, for which no words, but useful operations are available. And make sure they cannot be confused or mixed up. OK? And by Thursday. Great.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

ooooo! i sense a blinded study opportunity that might have useful implications for establishing a standard of care.

instead of outright sham procedures, how about real procedures that differ only in whether azy webs get cleaned out?

He's a busy guy, we should give him until Friday.

NZer1, thanks for clarifying, I didn't know about the subspecialties.

DrS, I'd like to see the SIR group figure out how to get to standardization quickly. What's the best imaging, the best ballooning techniques, the best catheter tools, the best after-care? How do you get every patient here the best outcome they can achieve? Where is the 'just right' between under-treatment and over-treatment?

If we are moving out of the era of travelling for treatment and into an era where most major metropolitan areas will have a CCSVI treatment site, then how much more emphasis should there be on after-care? There is restenosis, there is thrombosis, this has never been a one-treatment-and-done deal.

If there are any areas, such as the azygous, that tend to be underdiagnosed, then how can this best be taught to help every IR treating any of us to find all the CCSVI malformations that are present?

Another big issue is stents. 'First do no harm' -- what if stents turn out to be a terrible choice in CCSVI veins? What are the long-term consequences? What if stents are fine but they're being placed in physiological narrowings instead of true stenoses?

I bruise easy, I don't know how much that had to do with the bruise I had, but it was huge. About an inch & a 1/2 tall by 4" wide. And ugly! Really dark & nasty. I also had bad bruising from the blood pressure cuff. It kept pinching me, to the point of hurting while on the sedation & pain meeds they gave me. So they changed it out. After they were shocked at the bruising I had from it all!

this sounds like a collection of blood (hematoma) formed. as it clots it forms a semisolid mass that gets to form a scar tissue. It should slowly ds"organize and get smaller. it might completely resolve or there might be a small bump there forever. time will tell. it should not be a major problem

actually sonographers should be looking at the jugular and vertebral veins and the deep cerebral veins during the doppler. the doppler is used primarily to assess the presence of insufficiency or reflux. the other veins are inconstant

angiographers are recommended to study the internal jugular veins, the azygos vein, the left iliac, left ascending lumbar and the lumbar veins and the left renal vein. other veins are seen but are inconstant. no recommendations for treatment have yet been identified for them

Is ithis a clifhanger????

Robert

Thank you Dr S for your dedication, you are a saint!
Quick follow up:
After last procedure I was declining fast, Dr did not believe me but graciously scheduled a venogram (3 weeks after): left jug had narrowed to 2-3 mm in greatest dia. extensive vertebral collaterals, reflux in sigmoid and accross to right jug.
Stents (3) 10 X42 placement overlaping + 1 from Poland.

Day after: trombosis upper margin of stent, small amount of mural thrombus. Even after treatment the predominance of the flow goes through the vertebral collaterals.

Conclusion: left jug is now useless.

Last hope: right jug and Azygos. No change from august procedure.
Angio 12X40mm. I sent you the CD's. I will PM my personnal info. If you see anything or have any suggestions it would be greatly appreciated it. I have sworn not to leave any stone unturned before I make my final reverence.

my apologies for lenght, I am not a pro at that quoting stuff.

Dear Dr. Scalfani,

I had my procedure on the 14th of this month. I believe my IR spoke with you the morning of it. He did say that he found the narrowing in all the standard places that you have been finding it. I am in Nevada

He did have to use the cutting balloon on the right side to cut through some fiborous tissue so get the other balloon through. I think the largest balloon used was the 14 mm. I did have quite a bit of pain when he was opening the right side and was concerned about that and causing damage to the vein.

My left side was the most narrowed but seemed to open much easier. It has been 4 days since the procedure and I have seen no improvements at all.

I have people telling me that it can take time so I am hopeful, but I wonder if is caution and not using a larger balloon could be the reason?

I was on the table for about 4 hours, so he took his time and really looked at everything. My azygos was clear and the juglars were only about 60 & 50 % narrowed.

Most of my lesions and symptoms are from spinal cord damage, have you seen improvement from others with these types of lesions and do you think he should have gone with a bigger balloon?

My doppler did show refulx on both sides with the left being the worse. Refulx just in a upright position breathing normal as well as the vein being larger that it should.

MRV did show some narrowing but was not much of a help he said. I do have a follow up in October and if I have no improvement by then will ask for another doppler to see how the flow is. My question is do you think I should have the procedure again and ask for a larger balloon if there is no improvement and still refulx.

Sincerely,
Andrea

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www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.

Sal,
you know more than all these guys combined. Why in the hell arent you treating?