Ive been Liberated, but NO improvements! :(

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

Ive been Liberated, but NO improvements! :(

Postby adamt » Mon Aug 16, 2010 7:43 am

Hi all,

Im not sure if people remember but in June i had a negative doppler and negative catheter venogram, the dr said my veins were fine wih NO ccsvi,

A few days later i sent dr Sclafani my images and he said the IJV look narrow as they enter the chest and a possible azygos stenosis
i also sent my images to dr beelen in Belguim and Dr Vogl in Germany, they both commented on jugular stenosis.

So i recently got liberated, balloon angio on each IJV, they were ballooned twice each IJV and seemed to stay open, this was yesterday,

In the venogram report it says:
the right IJV was 30-40% narrowed with disturbed outflow , the left IJV was 40-50% narrowed at he valve level. The azygos was without significant hemodynamic stenosis.

Also the MRV results said:
The Right IJV is constricted between the transverse process of the atlas vertebra and the digastric muscle. On the left side significant compression of the IJV in the same mechanism, however the lumen of the vessel is visable on he entire length.

the left and right ijv were ballooned he same area = around the collar bone - looking at the images the balloon covered from 1.75" above the collar bone down to 0.75" below the collar bone = approx 2.5" balloon

- my left leg is weaker than the right leg

after the procedure i asked he doctor if there was now no stenosis now, but she said there is a little bit still, but the blood flow is normal now, and thats whats important.

- i had to stay lying down for 12 hours
i have been told to take a baby aspirin 75mg every morning for 6 months.


any opinions on why i have seen no changes? - does this happen?

i know its only been 24 hours since liberation but i see no changes and this bothers me as everyone else seems to see big improvements immediately.

or is it because as my IJVs are only 30-50% stenosed, i should expect no/litle improvements?

how long should i wait until i accept that i wont improve?

thank you for all replies :)
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Postby 1eye » Mon Aug 16, 2010 7:51 am

I personally would give it six months.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby CCSVIhusband » Mon Aug 16, 2010 7:51 am

How long have you had MS?

Didn't Dr. Sclafani say he saw azygous stenosis (if I remember reading your case correctly)?

I'm surprised at the lack of doctors around the world finding azygous stenosis ... Dr. Zamboni found it in 86% of his patients - and Dr. Sclafani concurs.

I can't speak as to why some people see immediate improvements, some see growing improvements over time, and some see little to no improvements.

I just know improving blood flow can't be a bad thing ...

Here's to hoping you see something my friend.

Ask CostumeNastional ... he reported similar things right after his procedure, and now I think he'll tell you he sees quite a significant level of improvements. SO I don't know is the answer I guess.
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Postby eric593 » Mon Aug 16, 2010 7:53 am

I'm not sure where you are reading your information if you have read that EVERYONE sees improvements. Have you been reading selectively?

Because there is an entire sticky thread at the top of THIS forum alone of people who have seen little to no improvements, and there have been a number of threads from people who have worsened.

I am sorry you are disappointed that you have not experienced any improvements. Sometimes it takes longer, sometimes people don't see improvements. Many people will be happy if they just don't experience any further progression. That alone would be a significant benefit.

Please be patient with yourself. It sounds like you had unrealistic expectations going into this and that can only lead to disappointment. Give yourself time to heal.
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Postby jimmylegs » Mon Aug 16, 2010 8:02 am

hi adamt, i think from what i've read that

* not everybody sees improvements,
* some see immediate benefits that fade,
* sometimes benefits make themselves apparent after some wait time.

i don't think we have a good handle on the reason for differences patient to patient yet.

i encourage you to document your case in one of two places (or both).

one is the tracking thread sticky (using the appropriate format) and the other is the 'Post if CCSVI treatment did NOT work for you' sticky.

hopefully one of the other CCSVI patients will check in - i have not been tested so i can't really commiserate per se.

hope you see some improvements soon,

jimmylegs

hopefully another of the liberated will pop in on this, as i have not been tested so i can't really commiserate.
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Postby jimmylegs » Mon Aug 16, 2010 8:03 am

LOL! when i started that post there were no replies yet. sorry about the repetition.
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Postby TMrox » Mon Aug 16, 2010 8:05 am

1eye wrote:I personally would give it six months.


I agree with this, that is the same advice that a few vascular docs have given me.

Please keep us posted with your changes (postive or negative) or lack of them. No relapses is also an improvement.

It seems you did not have complications in your angio. I'm glad, that is good news.

Rox
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 Cece » Mon Aug 16, 2010 8:17 am

Dr. Siskin has seen people who dramatically improve immediately, people who don't have improvements, and people who have longer, slower-to-come improvements.

They don't yet know why there is such a range. He'd divided it into thirds (a third have the holy-cow improvements, a third have the mild improvements, a third have none) but there's not much to prove that's the ratio one way or the other.

I am really sorry to hear you didn't see anything immediately. I hope the best for you that it will still come, just slowly. If the least we can hope for is no more progression, that is something that no drug has ever given us. But we all hope for more.

I think if nerves are 'compromised' then the restoration of blood flow can make those compromised nerves functional again. But if it's permanent damage, then they cannot come back.

Wishing you the best and, yes, there have been people who have seen improvements over a course of 3 - 6 months post procedure. Over on Facebook there is a group of "Slow Improvers", I don't know if they're still going but I'd posted the link a few pages into pklittle's thread that is a sticky now.
"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 kiwee » Mon Aug 16, 2010 9:01 am

i am sticking with my original thought;
ccsvi gives your body the opportunity it needs to start healing itself.
there are 2 main variables, imo;
length to which you have had ms,
and,
how healthy is your body.
give it time. it'll come.
what are your symptoms?
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Postby bluesky63 » Mon Aug 16, 2010 9:10 am

I was just musing about this myself and thinking about managing expectations. I don't know about your own personal MS history or the inner state of your veins, but I can say a little about my own experience.

I was really happy to have some improvements, but I did not have a "holy cow" liberation (as Cece put it :-) so eloquently) and I think that there could be a lot more to thins than we know. THat's why it's so exciting to be part of the discovery process.

In my case, I know I have abnormalities in the sinus system and in the brain that the venogram couldn't address. Is that why I have had only some improvement? Is that why some of the improvements dwindled?

I think that if you went by a few dramatic videos posted on you tube, you would be setting yourself up for unrealistic expectations. All of us want to be the dramatic case! But it's great to hope for the best and understand that it could take longer. Or we could just know that something is being adjusted in the veins and it could just mean no more progression. At least something positive is happenng, even if we don't see the immediate evidence the first day. :-)

I posted in my thread -- healing is not a day procedure! Be gentle with yourself, nurture yourself, and measure your recovery in weeks or months. All the very best to you! :-)
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Postby thornyrose76 » Mon Aug 16, 2010 11:29 am

She's right! Well said! :)
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Postby adamt » Mon Aug 16, 2010 1:32 pm

thank you very much for all the replies, this has made me more comfortable with my situation, and i will just ry and be more patient and positive.

To answer some of the questions,

I was diagnosed with MS 8 years ago when i was 17,
I had some minor bladder symptoms as young as 16

My symptoms are:
Mobility - leg strengh, balance, stiffness only when first standing though - all caused by demylination.
Bladder - frequency,urgency,control
Cold feet & fingers
No Libido
Weight loss

The Azygos vein is fine she said, he dye ran through he veins normally, no stenosis.
DrSclafani only said POSSIBLE mid-azygos stenosis.

Everyone is right, even though i kept telling myself 'i am expecting the
worse' but deep down i expected immediate improvements.


again, thank you everyone for the kind and helpful words, i will be patient and wait at least 3-6 months to see improvements, aswell as taking the baby Aspirin (75mg) each morning.

Is there anything else i should or shouldnt do now that i am liberated?

One last thing, as my IJV's are only stenosed 30-50% does it make sense that i have progressed/gotten worse so quickly?

i know someone who has had MS for 18 years and progresses Very slowly, he is in a much better mobility state than me!
Last edited by adamt on Tue Aug 17, 2010 12:38 am, edited 1 time in total.
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Postby Drury » Mon Aug 16, 2010 4:08 pm

Adamt,

It is so hard to have taken that huge leap and not have expectations!!

Please be patient and hopefully you will see improvements in the coming weeks and months. I know how I would compare myself to others too but we have to remember MS is such an unpredictable disease and therefore the outcome will be so different for each individual.

Take it easy as its early days for you yet.

Best,
Drury
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Postby Chrystal » Mon Aug 16, 2010 7:02 pm

Adamt, I'm sorry, I can imagine your disappointment. Please don't allow yourself to think that just because they weren't immediate you won't feel any improvements.

As Drury mentioned, MS affects everyone so differently and undoubtedly this procedure will also have differing results for each of us.

Like the others have said, please be patient with yourself, remain positive, and allow yourself to heal. Best wishes to you.

Take care,
Chrystal
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Postby Salvatore24 » Mon Aug 16, 2010 7:37 pm

It has only been one day, be patient. It took 3-4 days for me to notice any changes.
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