Must read relation for the benefit of MS patients.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Must read relation for the benefit of MS patients.

Postby Rici » Mon May 09, 2011 3:44 am

Hi and hello to everybody!
From the perspective on how much time I am involved with my patient’s experience in this matter it is my duty to give – for the benefit of all sufferers of multiple sclerosis – a relation about my current situation. After October 19th 2009 I informed how I was doing after experiencing the first CCSVI treatment in Poland. Now I must inform you what happened from that time on. These are important information for sick people. My “odyssey” will finally come to an end. However many patients are still suffering.

In the year 2009 in Poland only one CCSVI operation was performed: I was that patient. From this moment much has changed. Both to the better and to the worst. This is my analysis of the facts. New possibilities were created. The prices went up but – for the luck of the patients – not everywhere. These are the facts:
In Medicover the cost of the first operation is cheaper for more than thousand of € than other clinics; and this in a better, more comfortable and more professional environment. I can truly say something regarding this issue, because I was not only in Medicover and not only in Poland. Also others write about it: : http://www.ccsvi-ms.pl/forum/viewtopic. ... 4f88c15384. This is not only my opinion. In addition the CCSVI treatments in Medicover are performed with a newer, more exact and more expensive medical technology. The equipment is more expensive not so the costs for the patients. Before every treatment an accurate diagnosis is performed. In case of a restenosis the total costs in Medicover is smaller than only the first operation in other clinics. Yes: the first operation in other clinics in Poland is more expensive than a possible two operations in Medicover.
You will put your health in those hands, when you decide to take the services of Medicover: http://www.medicover.com/plen/hospital/ ... -staff.htm . Please take extra attention to the person of Doz. Maciej Kielar and Dr. Maciej Jaworski. They are performing the CCSVI operations: http://www.medicover.com/plen/hospital/ ... urgery.htm , http://www.medicover.com/plen/hospital/ ... Center.htm
I put these fact on the table because I know that multiple sclerosis patients do not have a lot of money, and I know what this disease does to people with full awareness. Therefore I recommend MEDICOVER Hospital. Multiple sclerosis patients are very often retired people and every thousand € is very important for these suffering persons. In addition everything in Medicover is under one roof: MRV, MRI, USG, accomodation facilities for relatives (hotel). It is not necessary make difficult (for the sick) travels out of town. Medicover is located a 20 minutes car trip from the international airport of Warsaw. With my experience in multiple sclerosis and with other hospitals it is my duty to inform other patients about these facts. In Medicover there is no room for improvisation. This is one of most advanced hospitals in Europe. I did not have a performed CCSVI operation in Medicover, but I had there an open operation on the jugularis vein, which nobody in the world performed it before but on me: http://www.thisisms.com/ftopict-16008.html . Here are the coordinates of the MEDICOVER Hospital:http://www.medicover.com/plen/hospital/

Warm Greetings to everybody

Rici, the first CCSVI patient in Poland: http://www.youtube.com/watch?v=tlsHJyGhI4g

PS: also a Professor from Israel has the same opinion about Medicover like many other patients.
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Postby Cece » Mon May 09, 2011 7:42 am

Go local if you can.
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Postby Johnson » Mon May 09, 2011 6:39 pm

Cece wrote:Go local if you can.

Many thousands of us can't.
My name is not really Johnson. MSed up since 1993
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Postby Rici » Thu May 12, 2011 1:34 pm

Cece wrote:Go local if you can.

Cece, I do not understand exactly what you mean. Could you please explain it?
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Postby Cece » Thu May 12, 2011 2:41 pm

A year ago, Poland was one of the only options for CCSVI (with Dr. Simka). Now that there are more options, it is possible for patients to go local or maybe have a short plane ride instead of a long one. The closer you are treated to your home, the easier it is to have follow-up appointments. And less stress from travelling.

There are people posting at TIMS for whom Poland is local. I would encourage them to go local as well. :)
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Postby cheerleader » Thu May 12, 2011 4:12 pm

Rici did go local, he lives in Poland. That's how he met Dr Simka. He is now recommending a different clinic. I met Dr. Simka at the Bologna conference and I recommended him to Erika on the boards in '09, since she lives in Slovakia--a train trip away.

I think what's important to note in Rici's case is that opening up the jugular vein, in his case, made his MS worse, because his reflux continued, even without a stenosis. I hope Rici won't mind me mentioning this, but I do believe he is in his mid-60s, and not a very young person.

His case reminds me of Dr. Chung's research into white matter lesions in the elderly due to valvular insufficiency. The veins became stretched out, and reflux occured. This is exactly what happened to Rici---the diameter of his vein grew. I worry terribly about people having valves removed, for this very reason. We do NOT know how aging effects reflux in the jugular veins, and it appears to be a problem for many. I think people need to consider this before having valves removed.

The etiology of age-related white matter changes is unclear. Cerebral white matter changes on magnetic resonance imaging (MRI) and progressive dementia have been reported in patients with dural arteriovenous fistulas of the sigmoid sinus. The frequency of jugular venous reflux, which mimics a dural arteriovenous fistula, significantly increases with age. We investigated whether jugular venous reflux was associated with the severity of age-related white matter changes in 97 persons (aged 55–90 years, mean [standard deviation]: 75.77 [8.19] years; 55 men) from a medical center memory clinic.

Methods
MRI (1.5T) and the semiquantitative Scheltens scale were used to investigate the severity of white matter changes. Subjects were classified into 3 groups (no, mild, and severe jugular venous reflux) by duplex ultrasonography.

Results
Subjects with severe jugular venous reflux had more severe age-related white matter changes in occipital subcortical, thalamus, pontine, and summed infratentorial regions compared with subjects with no jugular venous reflux (all corrected p< 0.0166), especially subjects aged ≥75 years (corrected p< 0.0166 in occipital subcortical; corrected p< 0.0001 in pontine and summed infratentorial regions). In subjects ≥75 years, we further noted that the whole brain age-related white matter changes rating scores were higher in the severe jugular venous reflux group than the no and mild jugular venous reflux groups (corrected p< 0.0166).

Interpretation
People with severe jugular venous reflux exhibit more severe age-related white matter changes, especially in caudal brain regions. We also demonstrate age-dependent jugular venous reflux effects on the severity of age-related white matter changes. These findings may provide new clues into the pathophysiology of age-related white matter changes. ANN NEUROL 2011
]
http://onlinelibrary.wiley.com/doi/10.1 ... 22276/full

If jugular venous reflux increase with aging, even in those without MS...people had better think about the need for working valves as they age. And I think patients need to really understand why they have reflux...is it a truncular venous malformation? Missing vein?

Dr. Schelling has spoken out about venous backjets, and has said we STILL do not know the whole story. Something to consider.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rici » Sat May 14, 2011 2:54 am

Cece wrote:A year ago, Poland was one of the only options for CCSVI (with Dr. Simka). Now that there are more options, it is possible for patients to go local or maybe have a short plane ride instead of a long one. The closer you are treated to your home, the easier it is to have follow-up appointments. And less stress from travelling.

There are people posting at TIMS for whom Poland is local. I would encourage them to go local as well. :)

Thanks for your aanswer CeCe. You are right a lot of people have problems after the CCSVI treatment done in Katowice. The problems are already solved and removed here in "Medicover" Here below you will read the relationship of one of these patients. http://www.ccsvi-ms.pl/forum/viewtopic. ... 5fff878a4c , quote: "During the treatment a flebography was performed with a new technique: this means that the contrast medium is given through the arteries, which gives a better picture of the circulation compared to the usual method, where the contrast medium is given through the catheter used for the check of the veins. This test showed a pathology on my left vein-valves, which would have been impossible to detect if the catheter would have been led thought the valve of the vein. Then an arduous ballooning of my left jugularis vein was performed, after which the left valves were checked for performance. The procedure was performed very carefully in order to avoid the effects and mainly also not to provoke a new reflux." They are making treatment other way. Many of us have the problem like me - too wide vein and patholigical valve. Its damge cause the turboM.S. because it expands the already wide vein. In that hospital first in the whole world you can reduce the diameter of the too wide vein and to improve the hemodynamics of cerebral blood flow, in addition to classical surgery CCSVI. My duty is to tell other patients about this possibility and of "high school ride" with treatments CCSVI where deformations are removed that were not to be observed in Katowice.Many patients did not feel any improvment and that is why neurologists are underlining it in their statistics.
Att Cher"cheerleader": Thank you for your full answer, I would like to thing it over so I will send you my reply later.
Warm Greetings
Rici
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Postby Rici » Sun May 22, 2011 12:58 pm

cheerleader wrote:Rici did go local, he lives in Poland. That's how he met Dr Simka. He is now recommending a different clinic. I met Dr. Simka at the Bologna conference and I recommended him to Erika on the boards in '09, since she lives in Slovakia--a train trip away.

I think what's important to note in Rici's case is that opening up the jugular vein, in his case, made his MS worse, because his reflux continued, even without a stenosis. I hope Rici won't mind me mentioning this, but I do believe he is in his mid-60s, and not a very young person.

His case reminds me of Dr. Chung's research into white matter lesions in the elderly due to valvular insufficiency. The veins became stretched out, and reflux occured. This is exactly what happened to Rici---the diameter of his vein grew. I worry terribly about people having valves removed, for this very reason. We do NOT know how aging effects reflux in the jugular veins, and it appears to be a problem for many. I think people need to consider this before having valves removed.

http://onlinelibrary.wiley.com/doi/10.1 ... 22276/full

If jugular venous reflux increase with aging, even in those without MS...people had better think about the need for working valves as they age. And I think patients need to really understand why they have reflux...is it a truncular venous malformation? Missing vein?

Dr. Schelling has spoken out about venous backjets, and has said we STILL do not know the whole story. Something to consider.
cheer

Hi
As for the chronology of my treatments in Katowice:
1st treatment made on 19th Nov in Katowice -Poland and brought me a dramatic improvement on what was written here on this forum. However, the valve is accidentally opened the right side of the crossing catheter is closed after 7 weeks. Damage, despite warnings from Dr. Schelling has brought me then the deterioration of my health condition (here again I'll give you a link to the valves surgery in Medicover http://www.ccsvi-ms.pl/forum/viewtopic. ... ce63488807 & http://www.ccsvi-ms.pl/forum/viewtopic. ... ce63488807 ). I started to look out of the problem, and also wonder why I got worse. Balloon was used (balloning) of the valve on the right side of the already wide vein, extending it further, distroying already bad blood circulation hemodynamics. You're right about people at my age (I have 56 years) There are many people of my age who has a problem as I have. Now we have a place where you can find real medical help. Here in Medicover are also conditions for open surgery. Regarding travel to Katowice from Slovakia with changes I've read. Certainly takes longer than by plane to Warsaw, and 20 minutes from the airport. It is my duty to inform older patients about the possibility in open surgery, not only angioplasty. I do not know, if anywhere in the world can do open surgery on JIV. Two letters M.S. and scientific councils of hospitals turn to hospital managment and decision-making goes to ... neurologists. I have an example from Israel. For permission we wait till now ... In Medicover the way is open. We at this age do not have much time for waiting being sick. The suffering and pain ...
Regards
Rici
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Postby Puma » Sat May 28, 2011 1:56 am

High Rici

I am gratefull for you to find these new ways for all of us. You are pioneer both for having stent and narrowing the diamenter of the vein in open surgery. Having one vein closed and second one too wide you were born to have MS and finding the way for the new possibilites for us all. So say my friends.
greetings
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Postby Rici » Tue May 31, 2011 5:50 am

Puma wrote:High Rici

I am gratefull for you to find these new ways for all of us. You are pioneer both for having stent and narrowing the diamenter of the vein in open surgery. Having one vein closed and second one too wide you were born to have MS and finding the way for the new possibilites for us all. So say my friends.
greetings
Puma :D

Yes but it do not want to heal properly, due to the immunosuppressive therapy (Fingolimod). It swelled runed the place and swelling press on the vein reducing diameter of the vein from 10mm to 4 mm in lenth of 3 cm. See photographs. http://www.ccsvi-ms.pl/foto/past1.jpg
http://www.ccsvi-ms.pl/foto/past2.jpg
http://www.ccsvi-ms.pl/foto/past3.jpg
It is true that with the immunosupperisve therapy wounds don't want to heal so fast. In addition I've got a lichen on the chin.
Regards
Rici
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