4 days after liberation update: I DO have improvements!

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

4 days after liberation update: I DO have improvements!

Postby adamt » Thu Aug 19, 2010 7:40 am

Hi all,

I wrote on here the day after my llliberation - balloon angio of both IJVs (Sunday) that i had seen No improvements,

well since yesterday i noticed 3 improvements!!

- My feet are a normal colour and temperature - compared to before when they were cold and blue ish/mauve coloured

- My balance is better, i walk in straight lines, and dont lose balance/drift off to the side - if i do lose balance its only very slightly

- For the last 8 years when i first stand up my legs are very stiff so i have to stretch them out by standing still for 5 seconds and tensing my legs muscles before moving to remove the stiffness = SPASMS , only when first standing though....
.... but now i stand up and can walk straight away, there is no 'stiffness/spasm so i now dont need to stand still for 5 seconds to stretch the stiffness/spasm out


I thought id share this update, and even though its not a huge improvement, its still better than no improvement..

Also if i do restenose now i can watch out for noticeable declines

and any improvement is good in my eyes.
Hopefully now i will continue to improve,

Do people who improve slowly, normally continue to improve beyond these ones?
or do you think this is the limit?


I also have May Thurners - according to Dr Sclafani's evaluation of my images, (but the dr wouldn't go through the left side) so ill try and get treatment for this at a later date, as i dont want to do too many things so close to each other.
User avatar
adamt
Family Elder
 
Posts: 303
Joined: Thu Mar 11, 2010 4:00 pm

Advertisement

Postby Trine » Thu Aug 19, 2010 8:56 am

I know you were disappointed in your other thread, but this is great to hear and I'm happy for you.





:D :D :D :D :D :D :D :D :D
User avatar
Trine
Family Member
 
Posts: 44
Joined: Fri Apr 23, 2010 3:00 pm

Postby sbr487 » Thu Aug 19, 2010 9:04 am

I remember reading somewhere on this forum that Dr. Simka recommends a period of 3 months before one can see improvements. I am sure it was experience speaking. If that is the case, I think only re stenosis can take you back. I cannot think of anything else that could make you lose the improvements ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby BooBear » Thu Aug 19, 2010 9:09 am

So happy for you, Adam!!!!!

I noticed the same thing when I squatted down to pet my dog the other day- when I was done, I stood up. That's all- nothing major, but certainly not something I could easily do a week ago. :) I totally get it.

Congratulations!!!
Three veins angioplastied.  One renewed life.  
User avatar
BooBear
Family Elder
 
Posts: 339
Joined: Mon Mar 01, 2010 4:00 pm
Location: Chicagoland

liberation

Postby blossom » Thu Aug 19, 2010 10:21 am

glad to hear this. even though i'm in worse shape less stiffness was one thing on a small scale that was noticed. i'm kinda flip flopping now. this is great that you can feel such a difference. wishing you better everyday.
User avatar
blossom
Family Elder
 
Posts: 1368
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

Re: 4 days after liberation update: I DO have improvements!

Postby Rokkit » Thu Aug 19, 2010 11:49 am

adamt wrote:I also have May Thurners - according to Dr Sclafani's evaluation of my images, (but the dr wouldn't go through the left side) so ill try and get treatment for this at a later date, as i dont want to do too many things so close to each other.

Did he give a reason for not wanting to go from the left?
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Postby whyRwehere » Thu Aug 19, 2010 12:38 pm

Hi Adam,
I'm glad to hear that news. I will be keeping an eye on your updates.
Why
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

Postby adamt » Thu Aug 19, 2010 1:46 pm

Thanks everyone for the kind words,

WhyRwehere: thanks, i still feel strongly that your husband goes to Poland for 'proper' treatment
As far as im aware , Ameds charge the least for testing and treatment - balloon angio. :)


Rokkit: i did ask to enter the left side but she said "no, only the right side",
i was kicking myself after for not demanding the left entry, but on thinking about it, they only offer "Cerebro-Spinal" venous treatment,

so even if i somehow persuaded her to enter the left, i would definitely get charged another few thousand pounds to balloon the left illiac vein,
i can get it done free on the nhs.

remember i know i have M-T so going in the left JUST to check for MT and not treat would be pointless.
:)
User avatar
adamt
Family Elder
 
Posts: 303
Joined: Thu Mar 11, 2010 4:00 pm

Postby Cece » Thu Aug 19, 2010 4:21 pm

wait wait I have kind words to add too!

Very glad to hear that you had some delayed improvements pop up! It is sad to read threads of no improvements or worsening so this was a nice save. :)

For May Thurner syndrome, we've seen people who have it get stents, get ballooned first but later stented, and in one recent case it was noted as being among the worst ever but no treatment was done because the collaterals had compensated! So even with a diagnosis of MT it's not completely certain how a doc will deal with it.
"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
Cece
Family Elder
 
Posts: 9009
Joined: Mon Jan 04, 2010 4:00 pm

Postby JCB » Thu Aug 19, 2010 5:34 pm

adamt,

Glad to see (hear) of your delayed placebo affect. I hope I get some of that.

Jim
User avatar
JCB
Family Elder
 
Posts: 141
Joined: Wed Apr 21, 2010 3:00 pm

Postby Drury » Thu Aug 19, 2010 7:33 pm

Adamt,

Great news and really hope there is more to come.

Drury
User avatar
Drury
Family Elder
 
Posts: 237
Joined: Sun Mar 28, 2010 3:00 pm

Postby sgriff » Thu Aug 19, 2010 7:39 pm

Yay adamt!!!!!!!!!!!! Try to be patient - it's hard I know. Don't freak out if you have some "not so great days" thrown in there too. I believe it will be a bit of a roller coaster ride, but as long as the line keeps going up slightly - it's good. Husband is 10 days from procedure and seeing some exciting improvements too.
User avatar
sgriff
Getting to Know You...
 
Posts: 21
Joined: Fri Jul 09, 2010 3:00 pm
Location: Baton Rouge, LA

Postby Chrystal » Thu Aug 19, 2010 8:44 pm

Glad to know that you are experiencing improvements. Wishing you more!!
User avatar
Chrystal
Family Elder
 
Posts: 241
Joined: Sat Feb 27, 2010 4:00 pm

Postby elyse_peace » Thu Aug 19, 2010 9:16 pm

adam -
i'm so :D happy to hear your good news. that makes one more for our team. l think we're winning! keep going!
elyse
User avatar
elyse_peace
Family Elder
 
Posts: 173
Joined: Thu Dec 31, 2009 4:00 pm
Location: Putnam, NY

Postby adamt » Fri Aug 20, 2010 2:33 am

Thanks everyone, lets hope the improvements continue

Its a crime liberation testing/treatment is not a gold standard for MS

JCB wrote:adamt,

Glad to see (hear) of your delayed placebo affect. I hope I get some of that.

Jim



sorry are you saying the improvements are due to a placebo affect?
or have i interpretted this wrong?
User avatar
adamt
Family Elder
 
Posts: 303
Joined: Thu Mar 11, 2010 4:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service