No Chat Room?

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

No Chat Room?

Postby jerkbutt » Sun Jul 11, 2010 5:28 pm

:roll:
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Postby Chris1967 » Sun Jul 11, 2010 5:56 pm

That would be very interesting as I am curious to know if anyone has truly had significant, life changing benefit as a result of their treating a diagnosis of ccsvi. I was treated in Bulgaria and would love to have a place to chat about it.

After my treatment I believe ccsvi is caused by other conditions, one of which is Multiple Sclerosis. I have had much change since the operation on May 5th and all for the worse. I'm significatley more disabled 10 weeks after the operation.
Last edited by Chris1967 on Tue Jul 13, 2010 7:27 pm, edited 2 times in total.
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Postby L » Sun Jul 11, 2010 6:08 pm

Chris1967 wrote:That would be very interesting as I am curious to know if anyone has truly had significant, life changing benefit as a result of their treating a diagnosis of ccsvi. I was treated in Bulgaria and would love to have a place to chat about it.

After my treatment I believe ccsvi is caused by other conditions, one of which is Multiple Sclerosis. I have had much change since the operation on May 5th and all for the worse. Very marked decline in disability.


You're not the first to report a worsening of symptoms. Have you posted on the 'Post if CCSVI treatment did NOT work for you' thread?

http://www.thisisms.com/ftopict-12342.html

Ups, sorry, I misread your post! I saw the word 'decline' and not 'decline in disability' !
Last edited by L on Mon Jul 12, 2010 11:16 am, edited 1 time in total.
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ccvi

Postby jerkbutt » Sun Jul 11, 2010 6:12 pm

I dont know I was Holly Sheans Boyfreind for 13 years.I believe it was the blood thinners
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CCSVI

Postby jerkbutt » Sun Jul 11, 2010 6:19 pm

According to Holly,She would do anything for her symptoms.She know it wasn`t a cure but a relief from her progressive ms.
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Postby dania » Sun Jul 11, 2010 6:32 pm

Chris1967 wrote:That would be very interesting as I am curious to know if anyone has truly had significant, life changing benefit as a result of their treating a diagnosis of ccsvi. I was treated in Bulgaria and would love to have a place to chat about it.

After my treatment I believe ccsvi is caused by other conditions, one of which is Multiple Sclerosis. I have had much change since the operation on May 5th and all for the worse. Very marked decline in disability.


Were you rechecked to see if you have restenosed?
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Re: CCSVI

Postby L » Sun Jul 11, 2010 6:35 pm

jerkbutt wrote:According to Holly,She would do anything for her symptoms.She know it wasn`t a cure but a relief from her progressive ms.


I'm sure she did the best that she could do. I don't know what to say. I'm so sorry.
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Postby jerkbutt » Sun Jul 11, 2010 6:53 pm

Her Check up turned into another stent R/J surgery.Meatball surgery I don`t know?DR Drackula?I Posse all her medical records.Holly went for it,her brain was donated to science,Holly loved this site and I love her and miss her,she gave me the name jerkbutt.Now Im fighting bank of america to keep our little house in Prescott Az.Holly found this House and bank of America can Kiss my @@@ on your hardship loan modification.Take care everyone ms sucks as Holly would say to me.xxxoo jerkbutt
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Postby CureIous » Sun Jul 11, 2010 6:53 pm

Good to see you back here jerkbutt. We miss Holly.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Chris1967 » Mon Jul 12, 2010 7:27 pm

L wrote:Ups, sorry, I misread your post! I saw the word 'decline' and not 'decline in disability' !


L you had it right, 10 weeks after ccsvi surgery in Sofia I am more disabled than ever, obvious to anyone.
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Postby Cece » Mon Jul 12, 2010 7:44 pm

jerkbutt, I am so sad for you, I don't know what to say. I did not know what to think but then last time you posted that she was on two blood thinners? I don't know of any doctors who are putting people on two blood thinners for this, that doesn't seem right. :(

Chris, if you post in Dr. Sclafani's thread, I wonder what he would suggest could cause this? It's the nightmare scenario, to go for this and get worse because of it. And of course after I type this I realize we're in the thread of someone who lost a loved one to this, which is beyond a nightmare. :(
"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
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Postby Trish317 » Mon Jul 12, 2010 8:25 pm

Jerkbutt, I'm so sorry for your loss. I won't go into details here but I've lost many people that I love. I know how painful it is. My thoughts and prayers are with you.
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Postby ErikaSlovakia » Tue Jul 13, 2010 12:57 am

Hi Jerkbutt!
I am sorry for your loss :(
I miss Holly as well. I wish you the best. I hope you solve the problems with house soon.
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
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Postby Chris1967 » Tue Jul 13, 2010 7:25 pm

Cece wrote:jerkbutt, I am so sad for you, I don't know what to say. I did not know what to think but then last time you posted that she was on two blood thinners? I don't know of any doctors who are putting people on two blood thinners for this, that doesn't seem right. :(

Chris, if you post in Dr. Sclafani's thread, I wonder what he would suggest could cause this? It's the nightmare scenario, to go for this and get worse because of it. And of course after I type this I realize we're in the thread of someone who lost a loved one to this, which is beyond a nightmare. :(


You're right Cece, there are some who are suffering the loss of a loved one from this horrible disease and jerkbutt my heart goes out to you.
I hope you can find comfort in the many happy memories you're sure to have. I hurt for you.

Cece, I will try to find the energy to write in Dr. Sclafanis' thread. Energy is hard to come by and fingers are failing big time. Give it a college try tomorrow.

Night All,
Chris
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Postby 1eye » Tue Jul 13, 2010 8:13 pm

A vague try: heart muscle, if pumped at the wrong time or with particular valvular problems, it seems to me should cause significant reverse circulation. A (right) heart-driven reversal will cause significant instantaneous vein pressure into the brain. The symptoms of insufficient tri-cuspid valves are the same as those of MS. The prevalence is higher. I have seen them called 'jets'. That may be why Dr. Schelling advises against removal of right jugular valves. I don't know.

But I'll be damned if I'll forgo this procedure because of some ignorance. Some may. Not me. If I were king I would have it available for all who wanted it. There's where we need research: the complications, the exceptions. And all of our hard-to-treat hardened disabilities. Stem cells. My friend with the broken neck. Those with worsening symptoms should be 1st priority for research. How else can everybody avoid it, if we don't even allow people to find out about it?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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