This Is MS Multiple Sclerosis Knowledge & Support Community

This is a reminder for all of us courageous trailblazers from Friedrich Wilhelm Nietzsche:

And those who were seen dancing were thought to be
insane by those who could not hear the music.


Let's KEEP THE FAITH. Aliyah

I have a question for you Dr. Sclafani...

When I was getting the ultrasound, the tech was looking on the right side and she had been rubbing the carotid artery and had made me very sleepy and I was nearly out. That same sudden drowsy feeling happens to me all the time. I can be awake and doing things and then I feel as if someone has slipped me something and I feel extremely drowsy. If I'm home, I will pass out for a couple of hours, sometimes fight the entire day to stay awake. If I'm not, I fight to stay awake until I am home.

My question, can this be explained by the blockages they are finding with CCSVI?

I am getting angioplasty done this week with Dr. Bonn in Philly. I was on your list. His tech, Mary, found blockages on both right & left IJVs. The left is worse than the right. The rest will wait to be seen until Tuesday's procedure...

Thanks!
Denise

Is a possible thalamus link something you can comment on?
Who has this area as a speciality?

The thalamus is a part of the brain that can be affected by MS. Neuroradiologists, neurologists, pathologists, neurosurgeons, anatomists and now interventional radiologists all are focusing on these structures. Each has his or her own perspective on it.

nr. 1 treatment agioplasty, nr 2 treatment angioplasty and when necessary open surgery, bur only on the jugular veins. He called this open surgery on the jugular veins a safe option.

My question is: Should this be a safe option for a completely blocked vein which could not be treated by angioplasy?

And is there already experience with this option, and do you consider this save too.
At least for me this remark of Dr. Zamboni wasa the first time this option was mentioned.

My surgeons were skeptical about the repairability of the veins, which tend to thrombose more frequently that arteries. But of course, they would not be the first to be skeptical about something said by Dr. Zamboni. However complete occlusion of the jugular vein is quite a different matter. where would the necessary graft be hooked in? Depends upon how high up the vein is clotted. Very high, very low likelihood of good repair since few do it for any reason. Hooking in low might require opening the chest, depending on where the jugular vein joined with the subclavian vein. (it is usually in the chest).

so safe is as safe does. Surgical experience will make a difference as you probably know. Frankly, I hope i never have to deal with that, eh, angie?

ersonally, my choice is to have stents implanted-but I appreciate that many others would be hesitant because of the dangers.

I suspect that because my veins tightened on the sixth day, the chances of migration would be lessoned after the veins start to narrow again. The veins would tightened their grip on the stent.

I felt human again after the procedure; in my mind it's worth the risks as opposed to the certainty of a horrible fate.

Each person has to make their own informed decision.

If I had what you described, i would probably also make a decision to take the risk for you sound like your options are very limited. Short term restsenosis means either that the angioplsty did not adequately treat your problem, or your problem cannot be adequately treated by angioplasty. Your conclusion that restenosis make migration less likely is possible, but migration will really depend upon how much it dilates after stenting, exactly where the stenosis is, how long the stenosis is, and a host of other issues.

While i do not want to have a migration in one of my patients, i do not think that is my greatest worry. it is more what to do if the stent clots off. will it be possible to re-established flow through the clotted stent. But for you that is a bride or stent that you havent arrived at yet.

I would love to see a picture of you pre and post procedure venograms..

MS_Mama's post makes me wonder about blood volume. Could an increase in blood volume in pregnancy cause more flow of blood and cause pressure on the veins as well, pushing them to open more? Then postpartum could the sudden change in pressure cause veins to collapse and start a cascade of relapses? Perhaps it it too simplistic .

i think what you say is quite possible or the high flow during pregnancy itself could have caused it.

by the way, what is wrong with simple?

LR1234 wrote:Dr Sclafani, I would like to get your opinion on manipulations of the neck/bones. From my own personal experience everytime I have my neck or lower back manipulated by a chiropractor I seem to have a relapse!

do you think that manipulating the neck and back can have an effect on blood flow?

What are your thoughts?

i am certainly not an expert on manipulation of the neck. but disks can sometimes be put back in place, i guess they can be pushed out of place. Perhaps what has happened is some movement that resulted in compresion of the vertebral veins that travel inside the bony vertebrae and slower flow. if you jugulars are narrowed, you need your vertebral veins even more so.

good question. sorry my answer is not based upon evidence

I wonder if anyone has done a randomized prospective blinded trial on manipulation of MSers?

Will get some letters to the SUNY IRBS in the mail. Perhaps we could make a new sticky and flood them.

if we flood them, they will never get to read my proposal

drscalafani, We most certainly want them to read your proposal !! I know that BNAC is waiting for IRB approval also. Why does it take so long for this approval process ? I was told the IRB board only meets once a month. That seems like eternity to me. It seems like it could take several months.

ozarkcanoer

dr sclafani,
i have been eating a lot of feta cheese since my liberation. Do you surmise this may be counterproductive and perhaps traces have accumulated back into my IJV's? For Sparta?

if we flood them, they will never get to read my proposal

Definitely don't want that!!!!

Dear Dr Sclafani,

Two weeks ago, I had angioplasty by Dr Thomson in Melbourne, who like yourself, is a skilled, relaxed and caring IR. He ballooned at 5 points including within a stent at the valve of the IRJV, which had been placed by Drs Ludyga and Simka in Poland, in November 09. The other points of ballooning were within both jugulars and the azygos.

For a week after the Thomson treatment there were noticeable changes similar to those experienced by many others - energy, better balance, less spasticity etc. Some of the changes have subsided and I sense this might mean that the veins have collapsed and I require a few more stents or something more permanent to keep them open.

However the most extraordinary outcome from the Thomson treatment related to my legs. For as long as I can remember I have had fat, puffy, tree trunk legs and ankles which I assumed was a deformity but worsened by 'MS'. Two days after treatment - no more tree trunk legs! Instead, shapely, normal, athletic legs that if you squinted a bit, might rival those of Michael Johnson. My wife could not believe her eyes - she clearly did not marry me for how I looked in shorts! I was walking around all day with my Jobst knee-high stockings falling down, around my ankles. The absence of edema, without a tight and constrained feeling to my legs and ankles, also made it easier to move.

Questions - have you seen similar 'leg' results in others and/or does this make 'medical sense' to you?

Thanks for your help,
Phil

Dear Doctor,

I have been reading the article of Dr. Zamboni in which he describes CCSVI and how to perform the five Doppler test. Nevertheless he does not give too much information about the expected reflux, like the minimum volume and time of the reflux to consider a positive in the test.

Is there any source where this parameters can be consulted?

In response to LR1234 query re: spinal manipulation, your reply

i am certainly not an expert on manipulation of the neck. but disks can sometimes be put back in place, i guess they can be pushed out of place. Perhaps what has happened is some movement that resulted in compresion of the vertebral veins that travel inside the bony vertebrae and slower flow. if you jugulars are narrowed, you need your vertebral veins even more so.

good question. sorry my answer is not based upon evidence

I wonder if anyone has done a randomized prospective blinded trial on manipulation of MSers?

after viewing this clip re: Atlas alignment, I got my chiropractor to manipulate my rotated atlas back into alignment (had been in several accidents involving head and neck years ago) --instant relief from years of severe pain and discomfort, incl many of the MS nerve symptoms--not a blinded trial, but proof it might be good to do one.

THEGREEKFROMTHED wrote:dr sclafani,
i have been eating a lot of feta cheese since my liberation. Do you surmise this may be counterproductive and perhaps traces have accumulated back into my IJV's? For Sparta?

dear greek
your fete of feta cheese may leave you with a fetid aroma

but George.....people take this stuff seriously

so lets be clear: the Greek is one of my patients and his rye humor has not been affected by his MS