Had loads of significant improvments.
Had relaps, new optic nerve issues and flair up of old vertigo symptoms.
Went back to Bulgaria. New scan, wide open jugulars and azy good as far as they could tell. Did not have venogram, but scan was ok.
Rest is doctors orders, so will do
For me, not feeling great one month after i opened my veins seems natural (even though i hate it) when i come to think that my first symptom goes back at least 6 years ago.
From what i ve read in your post, i can only say that having proper flow is great news. Chill out if possible and keep us in the loop please.
Remember that some of Zamboni's patients relapses resolved upon liberation (on the operating table) without the need of using cortisteroids but i dont think that this goes for everyone. Have in mind that in order to push for further research Zamboni's familiars may use some "highlight" moments too. Can you blame them? No, just think it out and relax.
Are you currently on MS meds?
- Family Elder
- Posts: 385
- Joined: Wed Nov 25, 2009 3:00 pm
- Location: Summerland. BC Canada
i had the procedure in katowice poand may 6th. same thing, all the great benefits are gone, i'm assuming i've restenosed, but after reading a few stories, and remembering we need to give it 3-6 months, i wonder...good luck my dear, its got to be the hardest 'patience' lesson ever!!!!!!!!!!!
I am still happy I had the procedure done, as some of the benefits has persisted. And all in all I feel better then before procedure, but it was defenetly a relaps.
Of course we have to be honest about it, Lyon. It is no point in ignoring facts if looking for the truth. I am quite confident that all us patients are honest about the results after liberation, both the good, the bad and the no difference. So that is the main reason to keep having it done.
I used to get Tysabri, some of the people on it were so happy about it, it did wonders for them. It did nothing for me, apart from making me worse, as it does to some of us. The neuros had no explanation to why it does't work with everybody, it just something we have to accept.
Same with liberation. It does work for quite a few, same with LDN, it does work for some. Why not look at it as a multifactoral disease with multipple solutions as well. If venes are blocked have them fixed, if endorphine levels are down, get them back up with LDN, if the immune system is going mental, take imuno supressants.
The combined result might be good
For somebody it might be sufficient to have liberation done, for some it might suffice with LDN and for others it might be enough with interferons. Why shouldn't these different treatments work together.
It might not be in our best interest if everything has to be proven to impossible levels. Not if we are dependent on more then one fix. If something is broken, FIX it.
I have the same story. I had the procedure with Grozdinski on 3rd June, I was in a relapse at the time, the procedure did nothing, now I had a bit of work and I am having new symptoms. I had no taste in the right side of my mouth and poor balance, i.e. weakness on the right, now the no taste feeling is still here, and the poor balance shifted to the left. I kind of feel very bad, I had my hopes up about this, but nothing... I feel awful now physically because of the anticoagulants, I have to take them for 6 mos because I have 6 cm stent in my neck, I simultaneously take the ldn, but I still feel very bad, I lot of head and shoulder pain because of the stent...
I really had my hopes up pretty high, I even think that I was better off when there was no sign of CCSVI, I was with peace with the fact that there is no cure, now this thing, with no improvements, completely messed me up.
I have had MS for 10 years, I only have relapses, no remaining symptoms, but this is the first time in my life that I feel really really ill...
I think only time will tell for all of us whether the trend post procedure is positive or negative. I have a feeling though that CCSVI and blood flow is the key to ridding ourselves of MS. I think it will just take time for the dr's to get the whole answer.
Hang in there.
- Similar Topics
- Last post
- 11 Replies
- 1330 Views
Last post by ElliotB
Fri Nov 23, 2018 4:50 pm
- 0 Replies
- 648 Views
Last post by Cece
Sun Dec 16, 2018 12:25 pm
CCSVI in MS reviews
Last post by frodo « Fri Aug 17, 2018 2:07 am
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by frodo » Fri Aug 17, 2018 2:07 am » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- 0 Replies
- 788 Views
Last post by frodo
Fri Aug 17, 2018 2:07 am
- 17 Replies
- 425 Views
Last post by jimmylegs
Fri Dec 21, 2018 3:33 pm
eye research supporting CCSVI
Last post by ThisIsMA « Thu Jan 10, 2019 12:28 amReplies: 1
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by Cece » Sun Dec 16, 2018 12:38 pm » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- 1 Replies
- 725 Views
Last post by ThisIsMA
Thu Jan 10, 2019 12:28 am