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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.

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

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 ...

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!!!

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.

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?

Hi Adam,
I'm glad to hear that news. I will be keeping an eye on your updates.
Why

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.

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.

adamt,

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

Jim

Adamt,

Great news and really hope there is more to come.

Drury

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.

Glad to know that you are experiencing improvements. Wishing you more!!

adam -
i'm so happy to hear your good news. that makes one more for our team. l think we're winning! keep going!
elyse

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?