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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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openmind
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Post by openmind »

hope410 wrote:My very best to you in your continued healing and recovery!

So tell me... how scared were you beforehand? I don't want to let my fears sway me, but I have to admit that I'm pretty scared about the prospect of a wire going up my leg and through my heart. Were you really nervous too?
the surreal thing is that when you know you have to be brave you dont feel scared at all, its just like being in a dream, you just get on with it. FEAR only stands for FALSE EXPECTATIONS APPEARING REAL anyway!! So when you get to the "reality" those expectations dissipate and disappear and you are left with a peaceful feeling just knowing that you are doing it!!

Never let FEAR rule your life, I used to be afraid of everything, especially what other people thought of me and this closed my world in around me. I was scared of going out incase people were looking at me coz i couldnt walk very well, I also felt very anxious about my bladder and bowel situation which just made it worse by worrying about it. Now I meditate every day and I use EFT to keep myself in the moment of NOW and not in the past or the future. I try hard but sometimes I admit to finding it difficult, but i know that It brings more joy into my life and less worry so thats a good thing for me. I also paint a lot to take me away from my thinking mind, which also lowers stress and this stress hormone racing around your body makes you feel "tight and stiff" .

I didnt sleep too well last night and today I am tired but this morning I did notice that coming down the stairs my foot was not wobbling about when it came off the step. My emotions are all over the place right now!! This morning was last day of blood thinners and antibiotics end this evening so hopefully next week I will start feeling much better again with no drugs.

i will keep you posted!
Jo x
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openmind
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Post by openmind »

Oh bye the way I dont think the wire goes through your heart?? it goes through a vein in the chest. :)
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openmind
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Post by openmind »

Lelo wrote:Hi Openmind, I had the same feeling of getting my symptoms back after coming home. It was a stressful experience to come home. A big familyevent the first day (not for me :( ). And two kids, who had the flu. So for almost a week my symptoms were back. But when the flu catched me after four days, it disappered immidiatly, to my surprise :o . Five days ago, everything changed and I started to feel strenght. One day I went to the mailbox and I realised I`m back on track. Today 16 days after surgery
( stent Left JV and valveproblem azygos ). I feel stronger than for years and my mind is clearer and I can deal with impressions and almost feel some creativity :D .
Hi Lelo, thanks for that! so did you feel not right for 16 days until things turned around. As i didnt have a stent I just have a niggling doubt that the vein has just closed up again, especially as my feet are cold and they were warm?? I know I am crazy :lol:
Jox
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prairiegirl
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Post by prairiegirl »

Openmind and Lelo,
Great to hear of your improvements-- wish you both continued healing!
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sunlounger
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Post by sunlounger »

Hi Jo :D

So happy to hear of your improvements,
You might find that you’re not lost
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lilaclomax
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Post by lilaclomax »

Hello - this is such a funny time as I too am unsure if both my right and left jugulars are still open or if one or even both have collasped.

With regards to the warm feet, just remember the amount of fluid that was pushed through our vascular system during out stay in hospital and the drugs too. When pregnant your blood volume increases and your body temperature rises, does the fluid alter the flow to feet too? Mine were actually sweating for the first time before my teens on the two days following the procedure, they no seem to have returned to before travelling to Katowice although my husband thinks they have not got as cold as before.
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acol
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Post by acol »

Hi openmind (and everyone else who may be reading this thread)

This is my first post since returning from Poland yesterday after having the 'liberation' procedure last Thursday the 25th March.

These thoughts may be a little jumbled and when my mind becomes clearer I may post in a more logical considered way. Dr Simka's doppler test revealed problems in my left and right jugular veins - the left being an obvious narrowing. The procedure resulted in a stent being placed in my left jugular while the ballon angioplasticy dealt with the right hand side.

To my surprise the procedure was not carried out by Dr Ludyga but by another surgeon. I say surprise because I was introduced to the former shortly before the procedure and I naturally assumed that he would be treating me. Just previously Dr L had operated upon both Duncan and Evan, the 2 Canadian brothers, who were in the same hospital room with me. Euromedic are now treating some 20 patients a week and so it is obvious that the work will need to be shared.

Immediately after the procedure I felt elated that it had all apparently gone so well. My feet felt warm and this continued for the rest of the day and for the overnight stay in hospital. If I turned my neck towards the left I slightly felt my left stent but it was not painful.

The following day we were discharged from the hospital and we all went to another clinic for the eyesight tests. We returned to our hotel around 10.30am where we met Tim and Badger. Badger was already experiencing noticable benefits which he has reported on another thread.

Later that evening we all met in the Skyways bar of the hotel. There was a tremendous camaraderie amongst us all and we felt that we were all good friends who had known each other for a long time.

We travelled back to England the following day. It was a relatively easy journey which was made even easier by our helpful Euromedic guide, Mark. We flew Whizzair, which I would thoroughly recommend to anyone.

How do I feel now? To be perfectly honest I have not noticed any obvious improvement. Yesterday, the temperature of my feet were more or less the same as before the procedure. I have no obvious improvement to report and I have a lot of bruising in my upper right thigh - beneath the area where the surgeon made the opening. I know that the surgeon had to press very hard to do the procedure. I was told that he was sweating profusely when he emerged from the operating room - I hope that was just from his physical exertion and not for other reasons!

In due course I will post on the tracking thread but for the present time I feel a little fragile and so please forgive me for being brief.
Nigel
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jak7ham9
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back from liberation

Post by jak7ham9 »

Hi everyone I too just had procedure in NY on 24th. Both jugular one valve completely closed and he used a new special cutting balloon on it.It actually hurt like hell when he opened the valve but no worries I survived and hopefully will start seeing some improvements. My feet hands are still cold. I started to sweat on hands and armpits for a bit during end of procedure not doing it anymore. So my neck still hurts a little off and on and it feels backed up when sitting up in bed neck leaning . Oh well hopefully will start to see some things especially as I have take blood thinner for 2 months now. I am going to start pt on mon and hopefully see improvements. Dr. Sclafani was very smart able and interesting. But Ionly got ballooned so who knows may be back. Barbara
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openmind
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Post by openmind »

19 days after procedure and 2 days ago I had the best day yet :lol: Maybe because it was Easter day who knows but I was so good, along day with all the family and they all commented on how "well" I looked in the face, my appetite was markedly increased from normal and I was really enjoying my food whereas I normally struggle to eat. My foot was lighter to lift into the shower and my balance was much much better. Walking was a "little" more steady and I went out into the garden with two sticks but didnt fall over.
The day continued until 7:30pm and I felt great even walking back to the car was easier. Getting out of the chair a lot easier, no spasms upon getting up and also not falling into the chair but sitting all the way down in a controlled way.
However following day i was back to stumbling around again and today I have started to pick up again so I can only compare myself to a car engine spluttering and starting and then running smoothly for a bit. I keep having experiences where i wil walk normally for two or three steps and then return to normal shuffle. But its all good stuff and I am very happy that things are heading in the right direction. :lol: Jo xx
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openmind
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Post by openmind »

6/5/2010 Jo Chant update Poland treatment
after 6 weeks I am starting to see improvements, little things but adding up to a lot of difference in my life, as wished for.
Sleeping better, turning over in bed easier
Legs not as stiff
No Spasm in legs
Writing better, got my handwriting back again
Peeled potatoes for the first time in years
Can bend down to touch floor without falling over
More energy
More stamina
Face just looks clearer and healthier, people keep commenting how well i look.
My walking is the issue, maybe able to go a bit further but leg stil not bending at the moment, currently working on loosening tight muscles in pelvis at chiropractor.
Toe nails growing faster!!!!! didnt seem to grow before
Got a runny nose and a slight cold ( not had a cold for years)
Appetite much better, able to eat more, really enjoying my food, was a struggle before.
Bladder better, had a couple of nights of not having to get up at all. Bonus
Bowel has not let me down at all, whereas before i was having accidents regularly.
Was falling regularly but have only fallen over once when i got angry!!
Emotions are a lot calmer, no more big mood swings :lol: hubby likes this!!
Feel like the hangover feeling has gone away
Still get some bad days when things return though
Able to focus more even when other noises going on in back ground, before i couldnt stand more than one thing at a time going on, ie radio on, or talking, not both.
still got dropped foot
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