This Is MS Multiple Sclerosis Community: Knowledge & Support

I have to say that the things I have read on this website and about this procedure and all the great things that you all are experiencing is making me feel hopefull again. I am a 26 year old single mother diagnosed with RRMS in the summer of 2007. I've always felt lucky that my symptoms are not horrible and are manageable but have been horrified to think how fast this could all spiral out of control. It's really great to see that so many people are having such positive results and are will to help each other through all of this.

I emailed Dr. Simka today, let's see how this goes.

<3

Good Evening TiMS & Micheal,
I'd like to welcome you to this site & i wish you the very best of luck in the future.Marian's people will respond to you but it may take a little time.
Slainte Mo Chara
Edser & Anna

_________________
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

Greetings MS family and friends

I'm new to this blogspot and was hoping to gleen some info as to how I can get CCSVI done and whether Dr Simka's office does the MRV scans, or whether I would need to do them here (US) and then take them to Poland

I need to know how to get in touch with his clinic and get scheduled for this miraculous, life altering procedure


I'm a UK/UK dual citizen, and was DX'd in 2005. I used to go home every year for 30 days each visit, but for the last year I'm progressively getting weaker, and I have such terrible temperature sensitivity I'm currently trying to figure out when the best time to go home is. Over the last coupls of years, I've been home during every season, and each time the damp and cold proves too much for my MS body

Now I'm REALLY starting to feel like I have MS. I would like to do the CCSVI procedure as soon as possible. In fact, I NEED to get it done. not just to cure this MadnesS, but my military career counts on me being able to do the Annual Physical Fitness Test that all soldiers MUST take 4 times a year. My MS disallows me from completing the APFT since I cannot walk the 2.5 miles the physical evaluation board requires me to do as an alternative to running 2 miles under timed conditions.

How do I contact his clinic, and how long is the list now that it seems the whole world is getting wind of CCSVI and 'the powers the be' are having clinics shut down for servicing MSers? I know MSers all over the US and Canada - and the whole world in fact - are probably blowing up his phone lines, but I can only try.

Thank you for any help you can give

Kindest regards,

dee522
as just liberated there...i believe its 2013 now...on the way to have our mrv's done i saw a direction sign to tychy and know its starting there too. ck this forum, it has all the info you need.

Dee, as the Simka waiting list in Katowice is rather long, you can also check out the other clinic in Warsaw AMEDS which has just started on CCSVI recently. I do not know it, but you will also find info for sure in several threads on TIMS by searching on AMEDS, and this is the web-site:
http://www.ameds.pl/

I called them just few minutes ago and I've been said they are preparing to start in June
RichTar

At last I should be in Katowice June, 8th on the Dopplerstest at dr Simka's clinic. Hopefully everything wil go well
Richard

An abstract from Dr. Simka´s paper.
It has not been published yet.

"CORRELATION OF LOCALIZATION AND SEVERITY OF EXTRACRANIAL
VENOUS LESIONS WITH CLINICAL STATUS OF MULTIPLE SCLEROSIS
Simka M, Ludyga T, Kazibudzki M, Latacz P, Świerad M, Piegza J
EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland.

ABSTRACT:
Background. Chronic cerebrospinal venous insufficiency is suspected to play a role in pathogenesis of multiple sclerosis.
Objective. Assessment of the correlations between patterns of venous lesions and clinical characteristics of multiple sclerosis.
Methods. Localization and degree of venous blockages in multiple sclerosis 381 patients were evaluated using catheter venography. Analysis of clinical severity included: Multiple Sclerosis Impact Scale-29 (MSIS-29), chronic fatigue and heat intolerance assessment.
Results. Venous blockages were found in 97.1% of the patients. Abnormalities were more severe in older patients. No correlation existed between duration of the disease and severity of venous pathologies. Patients with younger age at onset of multiple sclerosis presented with
milder venous lesions. Significant correlations existed between severity and localization of venous lesions and clinical burden in terms of MSIS-29 and chronic fatigue scores, but not of heat intolerance.
Conclusion. Prevalence of chronic cerebrospinal venous insufficiency among multiple sclerosis patients is very high. Indirect data analysis indicated that venous abnormalities are probably congenital, slowly progress, but are unlikely to be caused by multiple sclerosis.
Their severity and localization significantly modify clinical course of this disease. However, they are not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease."

Dr. Simka gave me a permission to share this abstract with my friends.
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

%97.1. Terrific news. Thanks Erika!

There are more than 10 pages of very interesting text, pictures and these references:

"References:
1. Zamboni P, Galeotti R, Menegatti E, et al. Chronic cerebrospinal venous insufficiency in patients with MS. J Neurol Neurosurg Psychiatry 2009;80:392-9.
2. Simka M. Blood brain barrier compromise with endothelial inflammation may lead to autoimmune loss of myelin during multiple sclerosis. Curr Neurovasc Res 2009;6:132-9.
3. Lee BB, Bergan J, Gloviczki P. et al. Diagnosis and treatment of venous malformations Consensus Document of the International uni0n of Phlebology (IUP)-2009. Int Angiol 2009;28:434-51.
4. Zamboni P, Menegatti E, Galeotti R, et al. The value of cerebral Doppler venous haemodynamics in the assessment of MS. J Neurol Sci 2009;282:21-7.
5. Zamboni P, Menegatti E, Bartolomei I, et al. Intracranial venous haemodynamics in MS. Curr Neurovasc Res 2007;4:252-8.
6. Zamboni P, Consorti G, Galeotti R, et al. Venous collateral circulation of the extracranial cerebrospinal outflow routes. Curr Neurovasc Res 2009;6:204-2.
7. Simka M, Kostecki J, Zaniewski M, Majewski E, Szewczyk-Urgacz D. Preliminary report on pathologic flow patterns in the internal jugular and vertebral veins of patients with multiple sclerosis. Przegl Flebol 2009;17:61-4.
8. Simka M, Kostecki J, Zaniewski M, Majewski E, Hartel M. Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis. Int Angiol 2010; 29:109-14.
9. Zamboni P, Galeotti R, Menegatti E, et al. Endovascular treatment of chronic cerebrospinal venous insufficiency, A prospective open-label study. J Vasc Surg 2009;6:1348-58.
10. Embry AF. Intergating CCSVI and CNS autoimmunity in a disease model for MS. Int Angiol 2010; 29:93-4.
11. Lee BB, Laredo J, Neville R. Embryological background of truncular venous malformation in the extracranial venous pathways as the cause of chronic cerebrospinal venous insufficiency. Int Angiol 2010; 29:95108.
12. Al-Omari MH, Rousan LA. Jugular vein morphology and hemodynamics in patients with multiple sclerosis. Int Angiol 2010; 29:115-20.
13. Menegatti E, Genova V, Tessari M, et al. The reproducibility of colour Doppler in chronic cerebrospinal venous insufficiency associated with multiple sclerosis. Int Angiol2010; 29:121-6.
14. Hojnacki D, Zamboni P, Lopez-Soriano A. et al. Use of Neck megnetic resonance venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls. Int Angiol 2010; 29:127-39.
15. Weinshenker BG, Bass B, Rice GP, et al. The natural history of multiple sclerosis: a geographically based study. I. Clinical course and disability. Brain 1989; 112:133-46.
16. Bartolomei I, Salvi F, Galeotti R, et al. Hemodynamic pattern of chronic cerebrospinal venous insufficiency in multiple sclerosis. Correlation with symptoms at onset and clinical course. Int Angiol 2010; 29:183-8.
17. Sclafani S. Chronic cerebrospinal venous insufficiency: a new paradigm and therapy for multiple sclerosis. Endovascular Today 2010; July:41-46.
18. Sundström P, Wåhlin A, Ambarki K, Birgander R, Eklund A, Malm J. Venous and cerebrospinal fluid flow in multiple sclerosis: A case-control study. Ann Neurol 2010; 68:255-9.
19. Doepp F, Friedemann P, Valdueza JM, Schmierer K, Schreiber SJ. No
cerebrocervical venous congestion in patients with multiple sclerosis. Ann Neurol 2010; 68:173-83.
20. Confavreux C, Vukusic S. Natural history of multiple sclerosis: a unifying concept. Brain 2006; 129:606-16.
21. Ludyga T, Kazibudzki M, Simka M, et al. Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe? Phlebology 2010 (article in press)
22. Zaniewski M, Kostecki J, Ziaja K. et al. Endovascular burgery for the treatment of symptoms of multiple sclerosis. Preliminary report. Chir Pol 2010; 12:12-7.
23. Hobart J, Lamping D, Fitzpatrick R, Riazi A, Thompson A. The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Brain 2001;124:962-73.
24. Flachenecker P, Kümpfel T, Kallmann B, et al. Fatigue in multiple sclerosis: a comparison of different rating scales and correlation to clinical parameters. Mult Scler 2002;8:523-6.
25. Chaudhuri A, Behan PO. Multiple sclerosis: looking beyond autoimmunity. J Roy Soc Med 2005;98:303-306.
26. Simka M, Zaniewski M. Reinterpreting the magnetic resonance signs of hemodynamic impairment in the brains of multiple sclerosis patients from the perspective of a recent discovery of outflow block in the extracranial veins. J Neurosc Res 2010;88:1841-5."

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

Thanks Ercia, really excellent news....

Wow. All I can say is wow. 97.1% with catheter venography. This is just fabulous. There are so many avenues to pursue in that abstract, where to begin?

1) The abnormalities are congenital, but progress with age? Weird. What do we do about that?

2) It appears the abnormalities are a necessary but insufficient condition. If so, it doesn't so much matter what the direct trigger is, remove any necessary condition from the equation and you interrupt the process. Just treat the stenosis and nothing else can happen. Hopefully.

3) Correlation between location/severity of obstruction and some MS symptoms is very intriguing to say the least.

Thanks Erika! This makes my day! Now then, let's see if this paper gets rushed to press like some other notable recent research.

Something else just occurred to me. If you can correlate location of obstruction to symptoms such as chronic fatigue, can't you separate real improvements from placebo effect?

In other words, you could do a study where everyone gets the real angioplasty, no sham treatment. Just don't tell any patients what got treated. The patients who claim fatigue improvement, but didn't have such a stenosis treated are placebo. I know it's way more complicated than all that, but hey it's a thought.

Hello Erika,
Thank you for sharing this info.
Did he actually tell you which particular vein correlates with Fatigue. I have been treated in Poland (stent left jug) and 12 days ago in America to unblocked the stent + complete venogram with angio in 3 major veins. Fatigue-Pain-brain fog still unchanged.
I have another veno scheduled for Nov. it would be usefull to know where to push the investigation.

Maybe I missed read it, if so , sorry for the redundance.

Thank you for continuous your involvement in this cause!

Hi Vivavie!
Dr. Simka mentions in his new paper this about fatigue:

"5. Heat intolerance, the symptom that is very typical for MS, does not seem to be directly associated with CCSVI. Chronic fatigue, the other very typical sign of MS, was significantly correlated with severity of CCSVI, but this effect was rather small. Perhaps, those global neurologic symptoms are related mainly to other pathophysiologic factors and not primarily to CCSVI."

I read whole paper. It does not say which vein is responsible for fatigue.
I am almost 10 months after my procedure, I still have problems with fatigue and heat. On the other hand my nerve pain is still gone.
Maybe I will know more in a month. There is a symposium in Slovakia and Dr. Simka will check my veins.
I do not know why but my blod flow was very slow in my left jugular (I had my first follow up 77 days after). I do not know if it is OK or not.
I remember I had more energy the first 33 days. I had flu and low BP after.
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