This Is MS Multiple Sclerosis Community: Knowledge & Support

this is from his letter to me:
I will give you some details on our current policy, and also on our finings coming from gathered data. perhaps, you can post these information on TIMS, since many patients are looking at this forum.

Our main goal of diagnostic procedures is to find all significant (i.e. impairing the outflow) venous lesions. Consequently, we perform Doppler sonography and MR venography as screening tests. Theoretically, both these examinations are not necessary, but in some patients (~10%) they are very important (anatomical variants, borderline pathology, unoperable lesions). Doppler sonography and MRV are only screening tests, i.e. they reveal that there is a pathology and in most of the cases they predict were the pathology is situated. But they are not 100% accurate. Intraoperative venography is far more reliable, but even this test is not perfect. So a combination of Doppler+ MRV + intraoperative venography is better. Now, we think about applying also IVUS (intravenous ultrasonography), but it will substantially increase the cost, so most likely we will use it only in selected cases.

Regarding the treatment, we opt for the most safe and the most efficient treatment, which of course is not possible, since those two parameters don't meet it every case. Balloon angioplasty has already been demonstrated to be very safe in a short time, and most likely safety in long time is also nearly perfect. But balloon angioplasty is not very efficacious. In some cases it doesn't work at all, in the others there are late restenoses. The short-term efficacy of an alternative treatment - stenting is much higher. But long-term efficacy (risk of late occlusion) is not known. Although occluded stent can be opened, but probably not in every case. And of course there are known early complications related to stents, namely the migration, that exclude some anatomic variants from stenting (at least using currently available stents). There is also possible the open repair of the vein, but risk and efficacy of such procedures are not known. Thus, all treatment modalities should be regarded as experimental, with still unknown efficacy and safety. The doctors always try to balance the risk and the efficacy factors, but the best solution is not always possible and is not always chosen (importantly, we don't have data on long term consequences of ballooning or stenting).

Now, what about impact of the treatment for CCSVI on clinical course of MS. Our data indicate that the things are far more complicated than it might be suspected.
1. CCSVI is not an equivalent for MS; most likely, MS = CCSVI + some (probably more than one) other factors
2. Consequently, treating CCSVI does not mean that MS is gone. Most of the patients experience good and bad days following surgery, importantly, during infection, stress, etc. the symptoms usually go back. But the symptoms also go back in a case of restenosis.
3. Treatment of CCSVI does not guarantee improvement. There were some patients (not much, still, they were) who experienced worsening. Most of those patients presented with severly narrowed veins that could not be sufficiently managed with ballooning or stenting, but there were also cases with "perfectly" done surgery. So, a patient can improve after surgery (a majority, especially relapsing remitting patients), but no improvement or even worsening is also possible. A reoperation can improve the symptoms in the latter two groups, but again, not in all cases.
4. Probably, surgery for CCSVI + pharmaceutical treatment will improve outcomes. Try to continue your neurological medication if it were working before surgery.
5. Many patients who suffered from transient worsening of symptoms, improved after inclined bed therapy. You can try it, even if not efficient, at least it is 100% safe
6. Postoperative Doppler examination is sometimes puzzling. In most of the patients the flow just after the suregery is still pathologic. Threfore we don't perform it after operation (we don't want to stress the patients). Even after some days there are still flow abnormalities, especially after ballooning. So, we think that patient should look at his/her symptoms first.

And, importantly, current situation when patients must travel thousands of miles to have the treatment is neither normal nor is it safe. At the moment healthcare systems seem to overregulated. It must be changed. Especially, cooperation with neurological community and big universities with access to big public money is pivotal. Surgery is not the only solution, it must be augmented by something else.



Marian Simka

TY esta, I found this very informative.

Thank you for sharing this.

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Esta thankyou. Most straight-up post I've read. Thankyou Dr S.

Thanks!
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

This is excellent. Thanks so much. Judi

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.

thanks for sharing.

_________________
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.

Thanks for posting Dr. Simka's response... Very informative.

HEY

_________________
"Never argue with stupid people... They bring you down to they're level and beat you with experience"

Based on his last comment about travel, does it make sense to stay as long as possible in Poland before returning to Canada/US?

I am not sure about this part. I've agreed with the line of thinking that MS is multiple scleroses or multiple scars; scars and demyelination remain after CCSVI is treated. So CCSVI stops the continuation of ongoing damage but previous damage remains. It sounds here like Dr. Simka is suggesting something different.

It is good to hear his explanation for why he considers the prescreening with doppler sonography and MRV to be useful.

Is over-regulation of the health care industry an issue? Would IRB oversight be considered regulation? Or the situation in Canada where MSers are denied a treatment that non-MSers can have? If you forgot about regulations and just gave patients what they wanted, would medicine become a "hair salon"?

Thank you for posting it, Esta, it's helpful and well-thought-out and he seems very much like one of the good ones.

_________________
"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

I have been thinking about this a lot.... dr Simka must be right... but...

Let's imagine a flight accident. Safety is so strict that there must be numerous factors (errors) in the system present at the same time in order to achieve an accident.
But these factors are not equivalent. I think there is always a significant factor which is a MUST in an accident. this significant factor in itself is not enough for an accident.

But without it there would be no accident not even with the other (smaller) factors existing.

This significant factor is CCSVI.
other smaller factors could be smoking, viruses, infection, what you eat, etc

hi cece
it sounds to me like he's saying theres more to this puzzle. the end all be all might not be CCSVI and its treatment...but its sure good enough for me right now.
i think we know enough that it's a great solution so far, but better ones, or ones in conjunction may just be down the road.
i know it will all get sorted out eventually.
he must be talking about canada, and us not being allowed the treatment, as most of his patients are from here.

hi thisisalex
don't forget vitamin D.
what if its as simple as that for mothers to be.

In my humble opinion, this makes sense to me

CCSVI and degree of

Time

Diet

= MS

Absolutely right on with my thoughts too Gordon.

Time with deoxygenated blood is what is the problem (causes dead blood/iron to build up which the immune system attacks and hurts the CNS next to it since the jugulars and azygous are right next to the CNS (often passing through it)).

CCSVI is what causes that deoxygenated blood in those areas.

The body heals itself (or finds new pathways and relearns) IN TIME ... so stop the deoxygenated blood early enough in the MS process and the body should heal (again IN TIME) ...

I don't think it's more complicated than that ...