Would you do it again?

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

Liberation treatment: Would you do it again?

Yes
63
89%
No (or, not the same way)
8
11%
 
Total votes : 71

Would you do it again?

Postby cah » Thu Sep 16, 2010 8:26 am

There were several polls here that tried to summarize the outcomes of the liberation treatments. But one question is left yet, one which sums up everything that can happen afterwards, I think. So:

Would you do it again?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby TMrox » Thu Sep 16, 2010 10:10 am

YES!!!!!!!!!
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby LivabirdsHubbie » Thu Sep 16, 2010 10:40 am

Speaking for my wife Livabird.... it is a great big
YES

in fact she is doing it again in Bulgaria on October 6th :lol:
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Postby dania » Thu Sep 16, 2010 10:49 am

Having had improvements that only lasted 1 week and got much much worse and then having done it again for the second time and got even worse than before. No, I would not have done it.
It works if the veins remain open.
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Postby ErikaSlovakia » Thu Sep 16, 2010 11:01 am

Yes.
I do not think it is OK to have blocked veins. I do not know for sure what impact it has on MS in my case.
Time and next Doppler will say and who knows what else...
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 Vhoenecke » Thu Sep 16, 2010 11:39 am

Yes, it is like I am given my life back that I haven't had for 20 years. My children have never known "me" and now they do. I realize that I am one of the first that has had this procedure as an MS patient and I am willing to have it done again if needed. I just wish I could have it done at home.
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Postby ozarkcanoer » Thu Sep 16, 2010 12:15 pm

I had the procedure on August 17, 2010. My symptoms are chronic severe pain, fatigue and double vision. I feel better with my pain and fatigue but I don't want to claim success until I go for 3-4 months with improved symptoms. I do have stents. I do not regret having the CCSVI procedure at all.

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Postby Johnson » Thu Sep 16, 2010 5:33 pm

Absolutely, I would do it again, and I am. I just finished straightening out my return flight to Poland. I'll be in the Skybar at the Qubus in Katowice on Oct. 6th, if anyone else will be there.. I anticipate my second treatment on the 8th. Hopefully this one will hold. I had myself back for a while the first time, and it felt great.
My name is not really Johnson. MSed up since 1993
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Postby PCakes » Thu Sep 16, 2010 5:43 pm

Johnson wrote:Absolutely, I would do it again, and I am. I just finished straightening out my return flight to Poland. I'll be in the Skybar at the Qubus in Katowice on Oct. 6th, if anyone else will be there.. I anticipate my second treatment on the 8th. Hopefully this one will hold. I had myself back for a while the first time, and it felt great.


:D !!
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Postby CRHInv » Thu Sep 16, 2010 7:53 pm

Yes! Yes! Yes! In a heartbeat, without a doubt!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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ccsvi

Postby blossom » Fri Sep 17, 2010 2:08 am

Last edited by blossom on Sat Sep 18, 2010 8:11 am, edited 3 times in total.
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ccsvi

Postby blossom » Fri Sep 17, 2010 2:09 am

Last edited by blossom on Sat Sep 18, 2010 8:15 am, edited 1 time in total.
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Postby blossom » Fri Sep 17, 2010 2:10 am

i had treatment aug.3. i had immediatly after procedure a numb leg i had never had. i did have slight improvements that lasted for about 10 days then it was on and and off. the numbness is letting up some but sorta feel worse otherwise in some ways but i do ppms and we'll see. i did not get stents and hopefully no clots. not too much worse for the wear so would i do it again? "YES"! if i were not getting as bad as i am or was newly diag. i would definitely have waited for several reasons.

if anyone had ever read some of my post way back i always said the fall i took in 1990 started this nightmare and when the first neuo. told me a trauma would not cause ms i told him well then i don't have your ms or it woke a sleeping devil. i tried chiro.'s, i tried to get dr.'s to check out my vascular because it felt like something was hindering my blood from my feet and hands certain ways i tilted my head i could move better none of the test were 100percent a shoe in for ms. but because i had 1 lesion on my cervical they felt i had ms. neuro.'s did not like that i would not take drugs and they hated it when i'd tell them i'm not sick i'm screwed up from that fall and you are missing something.

i did not have a computer until about 5 yrs. ago. then i hear of ccsvi and possibly trauma could come into play- ctos trauma. all this makeing good sence to me. i did not realizw how chiro's actually can specialize i thought they were all about the same just some better than others. then first i found nucca which did help my tmj and low back pain. so i figured ccsvi made sence i gotta try it. i have thoughts of my own why my leg went numb. "no fault of the dr. that did the treatment" but time maybe i'll get it answered. then comes along "upright dr." and it is coming full circle of what i felt for me at least everyone of the things causing this mess. do i have some permant damage-will i get better this late in the game-who knows. do i have a skeltal problem causeing ccsvi i feel i do i'm really gonna try to find out. i know i had bad jugulars and when treated it hurt and helped but to me it proves more and more that i was not this nut case the neuro's dealt with and why this and that was going on with what my body was telling me and the neuro's had no answers for or worse yet it wasn't the norm or their idea so.

so, yes i'm not sorry i tried and i'd do it again. but, each of us are different and only you know your circumstances. for myself i i feel i have to try and get some damage undone to my old bones if possible and finding the right chiro. will be a challenge i'm sure and see what happens then try ccsvi again if needed.

but there are some of you that for other reasons you may have ccsvi and the treatment is all you need. consider the risk, consider how long how bad you are. consider that they will soon have better stents. check out everything you can all the new doors that are being opened since ccsvi.
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ccsvi

Postby blossom » Fri Sep 17, 2010 2:13 am

god it wasn't bad enough my post was so long and then whatever is going on with me and my computer it hits 3 times. sorry.
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Postby CureOrBust » Fri Sep 17, 2010 3:14 am

I'm trying to organise the second treatment now.
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