This Is MS Multiple Sclerosis Community: Knowledge & Support

HP, I am so glad you did not give up after this report. Distortion of distal jugular vein due to presence of leaflet valves...whatever the heck is meant by that, it sounds like an abnormal jugular with valve involvement, and that is so very CCSVI!!

Beyond the patient's immediate health outcome, which is of course the most concerning thing...I don't want to think what would happen if a liberation-gone-wrong hit the media again!

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Not racial. Apologies. Socioeconomic, during this discovery phase. I am feeling guilt because I have mild MS (edss 0.5, not 5.0, 0.5...neuro said he'd give me a 0.25 if he could, I'm working my way back toward 0) and I can afford to go to NY to be treated by the Great Sclafani. And in another thread they are discussing how to ethically distribute this treatment, once it is proven, and no one can argue that people with my MS status come first...but I am putting myself up there, because even mild MS tears a hole right through your life...anyway I will get over the guilt and look for ways to be an activist for the CCSVI cause.

Jr4656, you mentioned feeling fried, I hit that maybe two weeks ago and recovered...now I've gone through worry and jealousy (will it ever be my turn to be treated?), elated (got over a minirelapse and improved on balance, cogfog, endurance, hooray, and then there is a possibility that things will be back on after June 9th) and now guilt and fear (what if I am the one who doesn't have any CCSVI malformations? after all this hope and emotional investment? and then I am sidelined and watching everyone else rejoice?).

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Thanks Dr Sclafani, I understand now.

I came across this drug for vertigo:

A newer drug often prescribed for vertigo and dizziness in MS is Betahistidine (Serc ®-16) an analogue of histamine and is claimed to reduce endolymphatic pressure by improving the microcirculation.

Could this be helpful to increase blood flow for after CCSVI treatment?

I take Niacin (B3) sometimes which seems to help as it causes the release of histamine but its very short lived (30/40mins)

Prokarin helped some MS patients and also had something to do with histamine I think.

Ah, that is very interesting! So not really over a longer time-span, but immediately within 10 Minutes?

I should really watch my CD more thoroughly to try to understand what happened in which sequence. I know they started ballooning the left side. And also felt low-pain strong pressure for longer and repeated periods in my left jugular. They informed me during the procedure, "now we need to balloon you again and keep the pressure a bit longer" and explained needed to do so since my vein generally too narrow. After that they ballooned the right vein, but I did not feel anything there, and also checked the azygous (I think that must have been the moment where they asked me to breathe in/out and push?). But no idea if they went back to the left side after they did the right to check if the overall dilatation of left vein had occurred...my procedure took around 50 mins.

But isn't it amazing that it seemed to me only like 15-20 exciting minutes And until the next day finally knew where my left jugular was since still felt the low-pain pressure there. Did not at all perceive it as unpleasant as reminded me that sthg had been done!

Now my questions:

Can one see a general overall vein dilatation difference (moment of first intervention versus 6 months later) in a doppler follow-up after 6 months? Or can one only see this via another catether venography or MRV?
And could there be a risk of a renarrowing of the vein, eg if restenosis caused by a potential fall-back of the pathologic valve, that was squeezed to wall via ballooning, would occur ?

I also still do not understand:
- if the valve gets (completely/partly?) destroyed via the pressure of ballooning (I think to remember you mentioned that possibility before, and that released valve pieces would then not be dangerous for migrating into heart as very tiny)
- or is squeezed to the wall (that is what was generally told in Poland when asked the question - they said they always ballooned a vein at the point of a valve).
- or might only be partly destroyed and remainder squeezed ?
I guess all can occur, depending on the case and applied pressure in ballooning and time-span length of applied pressure - but would you know if any of the three has happened more commonly?

Hi Rosegirl, just in case might interest you, certainly more than 400 around the world, as only in Poland (Katowice) was told already more than 500! As Dr Sclafani explained (and reasons for this) seems no published journals, except Zamboni yet. But for your info the first Kuwait results reported about the type of MS improvements and Simka on his Euromedic web-site also gives an older list that was presented at Hamilton, February 2010.

KUWAIT
All successful Angioplasty with satisfactory post balloon dilatation
No complications. All patients reported improvement ( 1 month) :
Improvement or disappearance of Numbness
Loss of Fatigue and increased energy
Improvement of power (foot drop)
Improvement visual acuity (No blurred vision)
Reduced electrical sensation
Memory improvement
SIMKA - Preliminary results and impressions
Follow-ups available only for some patients; however, most of patients reported improvements,
In general: the less disabled patients was, the bigger improvement,
No improvement or recurrence of symptoms may indicate restenosis,
Within one hour postop patients’ hands became warm (if cold before treatment) and faces pink (if pale before),
Bladder control improved within one day postop

Hm, when now see these two lists - some points can definitely confirm Know Simka monitors with questionnaires of how MS impacts on quality of life (as relates to certain symptoms + EDSS) before procedure. And also now relatively new: a Neurologist that interviews patients on type/history of MS (when diagnosed etc.) and current symptoms before and 1 day after procedure. However only a short interview after procedure - no questionnaire afterwards and follow-up only after 6 months if patient returns for the free doppler control + reports about improvements then, I guess.

Cece, just that you know that I have been through similar feelings...don't worry if you have MS you will have CCSVI (in Jan deemed likely they would not find anything on me) and we're indeed all in the same time-ticking boat. And apart from potential improvements on more recent symptoms who does not want and should not get the chance of prevention, whether already more disabled or less...I cannot see how this could be "ethically" distributed without unethical judgements...

As more pressure comes upon Dr.S to be back in business I am compelled to state that there is equal need for pressure to follow up on the outcomes of treatment.
At the moment there are more and more threads starting about the outcomes of treatment. There is a definite need to follow the trends that are forming. There are so many differences and also potential issues that are happening that I am becoming concerned that the wheels will fall off again soon.
Too many questions are unanswered regarding the diverse spread of outcomes for liberatees. We need to slow some of the flow of treatment and address what is happening from the treatment.
Yes changing the flow is having an effect. Yes there is indication that flow increases will have longitudinal effects. Yes there is indications that iron may have a causical effect, and what other content is there in depositions that we are unaware of? Why are the outcomes so diverse? The old thinking of disease progression and causes does not fit with the outcomes of liberation, the changes and improvements that are happening seem to be out of order with the current historical disease knowledge. What part does neuro-plasticity play in the equation? Changing the flow around the brain is having an effect that needs to be understood. The various purposes of blood within the brain is opening up questions about content, cooling, oxygen, removal of waste products, and a host of deeper questions. Too Many questions and not enough answers.
It is very import that there is good data capture before and after treatment that is followed up longitudinally and studied.
The brilliant work of DrS needs to be supported by more science, scientists and funding, before more problems are created than answers!
Are we putting a gun to Dr.S's head, by pushing him into a situation that is created by passion and not supported by science yet!

Hi, Dr. S,

I think I have a question which hasn't been asked before and as it is a holiday weekend, I am going to only have one day to find out from my doc.

I am scheduled for CCSVI procedure on Wednesday. Two days ago I got a tick bite. Today it appears that I have Lyme disease. I had this before so I know what the rash looks like. If I remember corrrectly, I will always test positive for Lyme since I will always have antibodies in my blood from the first time I had it, so I don't think a blood test would be given.....

The problem - Due to serious antibiotic allergies, the only one I could take last time was doxycycline - and it had to be done through a PIC line since the pills made me vomit.

Is it a correct assumption that s PIC line would not be a great idea while taking the blood thinners after CCSVI procedure? Would there be an increased risk of getting Lyme into my brain by having the procedure before dealing with the Lyme?

If I am wrong about my assumptions, could a PIC line be put in at the same time as the procedure is being done?

What would you do in this situation? Thanks for any advice.

nunzio, i am appreciative of your efforts too. Teach me more. How does one recognize CTOS clinically?

i am no vertigologist but I think they are speaking about the endollymph in the inner ear that controls balance. Since they are speaking about endolymph, i am wondering whether they are speaking about the microcirculation of the endolymph

i agree with you that we have many questions to answer and we need to have records of EVERYONE. Some doctors are doing liberation but the data is lost.

i am pleased and honored to be working with a group that is trying to develop an online survey that can help us evaluate the effects of liberation. It is very important that all cases be cataloged. so we can understand what is happening.

This past week i made efforts to bring investigators into the arena. Curious are some, enthusiastic, not yet.

Yes, if i get back into the procedure room in a couple of weeks, i will have to reduce my meager attempts to educate and be educated. I, like tariq sinan in Kuwait, would like to transparently list my cases and illustrate the findings on line. It will probably be on my own site, this forum is not suited to that

patience, patience, patience. You are right. if we move too quickly we will fall off the cliff and we will not be heard from again. Only a week ago, someone asked me to join a randomized trial. I am not sure, but it appeared to include physicians who may not yet have done any cases. I do not think we are ready for such trials. We need many IRs who are doing a safety trial first. a more scientific trial should come after we know how safe an IR is with the procedure. Otherwise we will have more failures and complications that come from starting.

yes, you patients do push me with your enthusiasm. thank you NZer1, for giving me a reality check

geez, nothing complicated!

off line

[quote]
To diagnose this syndrome, we do a complete medical history and the four diagnostic maneuvers, the Adson, hyperabduction, hyperextension and a new maneuver we have developed.

In addition to the above, we use the following diagnostic studies:

3. Imaging of the spine and thorax
4. Doppler ultrasonography with regular exercises and our maneuver in the upper extremities
5. Electromyography (EMG)
6. Study of nerve conduction velocity (NCV)


We added the following diagnostic studies:

7. Somatosensory evoked potentials of short latency of the upper limbs (SEP), which we identified as a specific diagnostic tests in the diagnosis of SPD due to the alteration of P14 waves caused by lack of oxygen and irrigation to the putamen and cortex brain, since 1984
8. Digital Intravenous subtraction Angiography (IVDSA) head and neck, since 1985
9. Possitron Emission Tomography (PET) scan for patients with Parkinson's disease since 1985
10. Single Photo Emission Computed Tomography (SPECT Brain), since 1990 (Table 3)
11. Transcranial Doppler ultrasonography with our maneuver, since 1994



Symptoms produced by CTOS

Headaches (migraine), neck, chest and arm numbness, chest, dyspnea transient memory deficits, dysphagia, dizziness, tinnitus, urinary incontinence, slurred speech, loss of consciousness, paralysis ipsilateral, severe stress, joint temporomandibular, amaurosis fugax, tachycardia, dysmenorrhea, heavy bleeding during menstruation, paresis, snoring and others.
Symptoms caused by Parkinson

Tremors, impaired writing, sialorrhea, seborrhea, shuffling gait, chorea, rigidity, aspect of monkey, and sexual impairment.
Complications CTOS

A. Described by other authors

12. Aneurysm of the subclavian and vertebral arteries
13. Thrombosis


B. Described by the author (11)

14. Ipsilateral paralysis
15. Loss of temporary or permanent vision
16. Full compression of the subclavian artery with impending gangrene of the upper extremities
17. Symptomatic Parkinson's Disease
18. Early Alzheimer's Disease
19. Pulmonary complications
20. Alzheimer's Disease Functional
21. Epilepsy
22. Multiple Sclerosis
23. Psychological disturbances due to hypoxia
24. Parkinsonism hemodynamic
25. Symptomatic early Parkinson's disease (ESPD)

This was taken from an english translation of a full paper by Dr. Noda.
The link is below
http://health.groups.yahoo.com/group/healingparkinsons/message/870
Interestingly they used neck doppler and intacranial doppler

From the same article, here is the new maneuver:

"2. Patients with CTOS / SPD under general endotracheal anesthesia with our maneuver, developed the following symptoms:
* A. high blood pressure
* B. supra-ventricular arrhythmia
* C. Cheyne Stokes respirations as a result of cerebral hypoxia.

Our maneuver includes:
1. Holding a deep breath
2. Bend your head up on the right or left shoulder. After our surgical technique, all the above symptoms disappear. "

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Dr. Sclafani:

When you resume the liberation procedure (note I am being positive here and saying WHEN and not IF ) will your IRB allow the use of stents or are you going to continue not using them?

Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call. I would consider "conservative practice" to do a balloon procedure first, hoping that would be sufficient to solve the problem. While that would clearly be the best outcome, the high rate of re-stenosis would seem that sometimes something more was needed, like a stent in those cases.

I would like to add my thanks to the others for giving us your time and expertise in answering these questions.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!