How soon have you seen improvements?

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

How soon have you seen improvements?

Postby suzq77 » Sun Jun 20, 2010 2:57 pm

To those that have been liberated: how quickly did you see improvement
- immediately? days? weeks? I saw some improvement the same day but I
thought I'd see more by now (48 hours later). Any input is
appreciated. Thanks!
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Postby Vhoenecke » Sun Jun 20, 2010 7:37 pm

My improvements happened on the operating table. I could tell my eyesight was better and that I felt better all over, my energy was there unlike before.

Val
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Postby Rose2 » Sun Jun 20, 2010 9:10 pm

It has been 8 months for me now.
I still notice improvements every day. It took 10 years to drag me down to the point at which I was liberated and am stronger every day.
Just like MS has always been a hindsight issue for me, so has my new Liberated Life. I can look back at last week and last month and see how much more I can do today.
More stamina, core strength, longer days, etc. When I think I have gone as far as I can go, I continue to improve.
Not to ignore your question, I did notice fatigue, heat sensitivity, cognitive issues improvement right away. I cannot stress enough how much I believe that for me the fatigue was a vicious circle with the loss of strength and progression. When the horrid fatigue issue was gone, then I could begin think about doing things and then eventually do them.
Some days I over do it, get tired and scare myself. I have to remember I am 10 years older than when I started this battle and I have not been left unscathed. And then I get up early, have a full day on the golf course in the sun hiking up hills and down valleys. And I smile ;)
Sincerely, Rose
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Postby ErikaSlovakia » Sun Jun 20, 2010 11:35 pm

I had my first improvement 3 hours after the procedure - I saw clearer.
5 hours after the procedure my bladder became better - it was easier to empty it.
- 7 weeks after the procedure - my walking was better
- 5 months later my nerve pain was better
- My fatigue was really better the first 33 days, then it was worse for more than 2 months, after better again - until now but I have my limits. I can not do whatever anytime like healthy people.
These are only some of them.

The best thing so far is I have not had any attack and I do not have any new symptoms, no old symptomps are worse.

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 runforMS » Mon Jun 21, 2010 4:18 pm

This gives me so much hope! I am going for testing/liberation (if warranted) next week. I will let you know! I am trying to keep my emotions in check and not expecting a miracle, but on the other hand dream of waking up/walking out of the Dr's office feeling MS free! Since I have started this battle (a short year ago-when the 1st symptoms started) I have had 2 days MS free-No rhyme no reason. So I pray I will have many more of those days and add to the positive outcome/hope for others!
dx 1-6-10
Liberated 6-10, 1-11
In God I trust
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Postby blossom » Mon Jun 21, 2010 8:56 pm

runforms, the best to you and many prayers sent your way as you start your journey to health and healing. i got my terrible towel ready to celebrate your victory.
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Postby CureIous » Mon Jun 21, 2010 9:30 pm

Expect some ebb and flow in the improvements, assuming they are coming in an easily measured fashion.

Expect to have a different story than anyone else that has been liberated so far.

Expect to see some improvements only in hindsight. Even .05 % per day is going to add up over time.

I tossed out (in my mind) anything that happened for the first three months until off the thinners, good bad or otherwise. Expect some adjustment period in there.

I walked onto my first jobsite today, long story as I'm not actually working there yet but will be shortly and was tagging along with someone else. It's a big powerplant in Anaheim. It's a 1 1/2 year job, a lot of work. Instead of thinking "how am I going to make it through this?" when I saw all those hardhats and busy bees running around, thoughts of all the fatigue and cog fog and how that doesn't mix with heavy machinery and construction were furthest from my mind. I can't WAIT to get back to work!

But it took some time to get to that point post-op, but I can truly say I am there, bells on and burning to go.

Took some time, far longer than what I had originally anticipated but I'm there. Finally.

It's hard to be patient but you can do it, hang in there...

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Katie41 » Mon Jun 21, 2010 10:29 pm

Congratulations!!! "All things come to those who wait." You certainly are the patient one (or one patient) LOL. Enjoy your new job! They are lucky to have you!
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Postby Salvatore24 » Mon Jun 21, 2010 10:58 pm

I did not notice any major changes the first 3-4 days, maybe a touch less fatigue, but that's about it. On the 5th day, no more fatigue, no more cog fog, virtually no symptoms (numbness, tingling etc).
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symptom resolution

Postby hwebb » Mon Jun 21, 2010 11:39 pm

hmmm, the instant the pressure build up was released from my head I regained some sensation in my lips, my cog fog went, and I regained feeling in my toes. My nasal sinus congestion also cleared (similar to your ears popping when descending in a plane). This all occured when i was on the table, getting the procedure. I felt full of energy the next day. It was not until several days later that my fingers and lips actually felt warm. My fingers remained numb though. Unfortunately, several of my old symptoms reappeared when my jugular restenosed. Not all symptoms returned, so I suspect my azygos is still open.
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Postby joge » Tue Jun 22, 2010 12:58 am

I was operated last thursday in Belgium by dr. Beelen.

The next morning waking up in bed in the hotel, I showed my wife how fast I could move the fingers of my left hand. With a big smile on my face.

Immediately I could walk straigter, better, faster. I could stretch my left hand all the way, and most importend, the fatigue was a lot less. Life is more bearable again. The atmosphere in our house is better! I'm cheerfull!

I pick up a spoon from the floor, getting up is easier! Just for fun I dit it four, five times!

I climbed up the stairs to fix a broken lamp; a week ago I wouldn't have even thought about it; I would have broken my neck; surely!

My GP is flabbergasted. My neuro is going to be surprised (he was against my actions) and my fysiotherapist is not going to believe wat he is about to see tomorrow!

Mind you; I have PPMS and was warned before the operation not to expect to much.
:) :) :P :P
I'm ready, I'm ready !
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This is very encouraging

Postby suzq77 » Tue Jun 22, 2010 7:23 am

Thanks guys! And please keep the feedback coming...

It's reassuring to know that not everyone has these transformative-type experiences. I have seen improvements, just not in the way I was expecting which is my fault...

I think the videos are skewered towards the positive, but why wouldn't they be?

Anyway, thanks again!

Susie
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Postby tzootsi » Tue Jun 22, 2010 8:36 am

My wife had the procedure 9 weeks ago. There have been improvements, but I suspect there are more in the works.
-Almost immediately after the procedure, my wife had a sense that her perception of her surroundings was 'brighter'. Also, the color in her face was healthier.
- A few weeks later, her l'hermettes (which was quite severe), has almost totally subsided.
- A few weeks later still, her right hand seems stronger.
- Her heavy right leg is still heavy, but seems to tire slightly less.
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Postby chrishasms » Sun Aug 01, 2010 1:02 pm

how many of you are PPMS?
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Postby Cece » Sun Aug 01, 2010 5:16 pm

joge wrote:I was operated last thursday in Belgium by dr. Beelen.

The next morning waking up in bed in the hotel, I showed my wife how fast I could move the fingers of my left hand. With a big smile on my face.

Immediately I could walk straigter, better, faster. I could stretch my left hand all the way, and most importend, the fatigue was a lot less. Life is more bearable again. The atmosphere in our house is better! I'm cheerfull!

I pick up a spoon from the floor, getting up is easier! Just for fun I dit it four, five times!

I climbed up the stairs to fix a broken lamp; a week ago I wouldn't have even thought about it; I would have broken my neck; surely!

My GP is flabbergasted. My neuro is going to be surprised (he was against my actions) and my fysiotherapist is not going to believe wat he is about to see tomorrow!

Mind you; I have PPMS and was warned before the operation not to expect to much.
:) :) :P :P

This is a fantastic report. I am happy for you and your family! And PPMS too!
"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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