CCSVI and Cervical ribs? + Frankfurt log

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

CCSVI and Cervical ribs? + Frankfurt log

Postby panAmerica » Wed Jul 28, 2010 11:40 am

Hello, everybody ;-)

i'm diagnosed with RRMS since 2007. A side diagnose to the MS were two nearly complete developed cerivical ribs. They never made any trouble to me i think but...

... when i'm thinking about it i'm wondering if they might cause CCSVI. I read about opticus neuritis as the "manager disease". Because managers often wear too narrow cravats what might cause a opticus neuritis.

And indeed my main issues are the eyes. both of them... i searched the forum but i found only one topic with no answers, so are there any other guys with cericival ribs?

The presence of a cervical rib can cause a form of thoracic outlet syndrome due to compression of the lower trunk of the brachial plexus or subclavian artery. These structures are entrapped between the cervical rib and scalenus muscle.

http://en.wikipedia.org/wiki/Cervical_rib

In my opinion, if arterys can be compressed, veins can be compressed too? What do you think?
Last edited by panAmerica on Fri Sep 03, 2010 1:02 pm, edited 2 times in total.
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Postby blossom » Wed Jul 28, 2010 9:45 pm

i feel that way. i hope the dr.'s start looking at this real hard and maybe they are and we are not aware yet. but if dr. noda had improvements in people with ms when he did surgery to take pressure off the arteries maybe it also at the same time took pressure off the veins. makes sence to me.
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Postby panAmerica » Mon Aug 30, 2010 2:04 am

by the end of this week i have a MRV with Prof. Vogl at Frankfurt, Germany. I will let you know if there is a link between my cerivical ribs and my MS or the CCSVI which i hopefully have. :?
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Postby shye » Mon Aug 30, 2010 6:24 am

one more anomaly in this whole MS/CCSVI scenario?
good luck with it PanAmerica--and please do keep us posted.
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Postby frodo » Mon Aug 30, 2010 7:58 am

Have you heard about TOS / CTOS? Is a condition in which the muscles of the neck compress several things in that area, the veins among them. You can find more information in this forum looking for CTOS.

Here you have an article from Dr. Poblete that says he has found cervical ribs producing TOS in some of his patients. It is in Spanish but you can use google translator. I give you a translated quote:

"It was also suspected at some point that some exuberant callus could have some possibility in the genesis of TOS, as well as some old sacks or fractures of the clavicle, and the presence of cervical ribs. [ ... ] Some of this anomalous ribs were not compressing".

"También se sospechó en algún momento que tendrían algún rol en la génesis de algunos SOT los posibles callos exuberantes de antiguas fracturas costales o claviculares, como también la presencia de costillas cervicales [ ... ]. Buena parte de éstas costillas anómalas no han demostrado ser compresivas"

Link

http://cirugiavascularactual.blogspot.c ... chive.html
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Postby panAmerica » Mon Aug 30, 2010 10:10 am

Hi,

thanks for all the answers i will keep you updated as soon as possible!

Have you heard about TOS / CTOS?


Yes. I heared about TOS. When i read in the report from the hospital about the cervical ribs i googled a bit. But i just found problems with the arms. For example nerve damage which can simulate MS and perfusion problemes inside the arms (which i normally don't have). I will have a look in the paper. Thx for it.

one more anomaly in this whole MS/CCSVI scenario?


I think so but... i hope to have a normal stenosis cause cervical ribs excision is much more dangerous as a baloon dilatation and has much more side effects. :roll:
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ctos

Postby blossom » Mon Aug 30, 2010 10:23 pm

frodo, in my quest to try to at least get tested for tos because i had read somewhere that if you have tos you are likely may have ctos. i could be wrong about that. anyway the dr. brought up that tos surgery is not a cake walk either. some actually end up with more pain etc. and scar tissue can become a problem. when i read about dr. noda i found nothing about any downfalls to the procedure. do you know of any? the tos site has the good the bad and the evil so to speak. since tos is recognized there is more info. do you know if the dr. in spain has anything out there on cases that may have gotten even worse? i really believe in my case at least that there is something pressing on nerves and veins or at least too close for comfort. pain is not a real biggie in my case and i'd hate to have that added to the list. so far thank God eyes, speech are ok.i have plenty of the other things big time. as with ccsvi, of which i am still a advocate, we are finding it is not a piece of cake in some cases. my treatment left me immediately with a numb leg and foot and that remains and numbness anywhere was never an issue. the very small improvements have left and i am worse. thankfully i did not get a stent and have to deal with that too. so now i have to get this figured out. my gut feeling is that i've always had the neck question and differences in the placement of my head that would cause changes. i don't come close to having the medical savy you guys do. but i'm wondering if when ballooning it could have put more pressure on a nerve causeing my numbness and if i am crammed for space in that area anyway how would a vein not restenose? so i do want to somehow pursue the ctos but at least have a better idea of the risks too. you and nunzio seem to be up on this the most. any thoughts or info? i always enjoy your posts.
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Re: ctos

Postby frodo » Tue Aug 31, 2010 7:48 am

blossom wrote:frodo, in my quest to try to at least get tested for tos because i had read somewhere that if you have tos you are likely may have ctos. i could be wrong about that. anyway the dr. brought up that tos surgery is not a cake walk either


No. It is not a cake. Probably they will cut a piece of one of your neck muscles if your TOS is severe. On the other hand, it it is a soft TOS they will give you physiotherapy.

blossom wrote: some actually end up with more pain etc. and scar tissue can become a problem. when i read about dr. noda i found nothing about any downfalls to the procedure. do you know of any? the tos site has the good the bad and the evil so to speak.


No. I have no information. There is a Facebook patients lists. Here you have the list of the 20 (by now) MS-TOS patients operated by Poblete:

http://www.facebook.com/notes/para-apoy ... 2144261409

blossom wrote:since tos is recognized there is more info. do you know if the dr. in spain has anything out there on cases that may have gotten even worse? i really believe in my case at least that there is something pressing on nerves and veins or at least too close for comfort. pain is not a real biggie in my case and i'd hate to have that added to the list. so far thank God eyes, speech are ok.


No. I have no information about Castillo Recarte. Nor good nor bad. Maybe you can try to contact him and ask directly. I will PM you his email.

blossom wrote:i have plenty of the other things big time. as with ccsvi, of which i am still a advocate, we are finding it is not a piece of cake in some cases. my treatment left me immediately with a numb leg and foot and that remains and numbness anywhere was never an issue. the very small improvements have left and i am worse. thankfully i did not get a stent and have to deal with that too. so now i have to get this figured out. my gut feeling is that i've always had the neck question and differences in the placement of my head that would cause changes. i don't come close to having the medical savy you guys do. but i'm wondering if when ballooning it could have put more pressure on a nerve causeing my numbness and if i am crammed for space in that area anyway how would a vein not restenose? so i do want to somehow pursue the ctos but at least have a better idea of the risks too. you and nunzio seem to be up on this the most. any thoughts or info? i always enjoy your posts.


If your disease has changed for worse after angioplasty that means that vascular system is involved. I hope soon we will know more about this disease.

Good luck.
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Postby panAmerica » Fri Sep 03, 2010 12:59 pm

short status report:
yesterday we were in Frankfurt for the MRV. Prof Vogl was very kind and professional. His staff also. All in all it took less then 3 hours.

Result:
Right jugular 30% narrowing
Left jugular >80% narrowing

Ceriviacal ribs were not a topic cause the stenosis were to high and near to the skull. On monday at the doppler appointentment with Dr. Meyn we will see more.

But Prof. Vogl told us that the condition (only the left side) can/could propably be "fixed" and that we should think about it very well cause its experimental and risky.
In Frankfurt they do not believe in the "iron-theory" of Zamboni. They only believe that MS-patients are more sensitive for changes in blood flow.
To give a number from Frankfurt experiences: 40% can achive a long-term improvement (especially fatigue). "Improvement" was not defined.

I will give you an update next week.
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