My Poland Experience

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

My Poland Experience

Postby ClaireParry » Sun Apr 04, 2010 10:42 am

Hi,

Back from Poland after my procedure. I have to echo many other comments and say it was an amazing experience. Met loads os amazing people.

Will post on Tracking but too tired to fill out all the bits and pieces right now.

Procedure fine (balloons only), the serious nervousness I was feeling was not required!

Next morning (Tuesday) went straight back to Hotel and spent day in bed.

Went for dinner that night and felt awake which was nice.

Woke next morning Weds with far less spasticity. Walked straight to bathroom with far looser muscles than previously. However, had the start of sensory issues around my pelvis, but ignored those. Partner thought I was more 'with it'. Balance and vertigo same, but breathing better and clear headed. I think sight from left eye very slightly better. All changes are small ones. Went out that night to an Irish bar with 'the boys' (Marek and Majek - they are lovely!!) and stayed until 2am! Tired but concious - thats amazing.

Thurs woke up same but sensory issues now spreading to thighs. Ignored again and went for walk and walked much further than I had for a long time. This didn't do me any favours as then I had to get back! Balance and vertigo really set in. Pain at puncture site. Advice: DON'T DO THIS AFTER PROCEDURE - JUST REST!.

After this spasticity started to get worse and sensory issues getting bad. Can't even feel when I need to open my bowels (sorry!!!).

Friday spasticity back to square one, now I'm depressed about that to. Had a good cry and pulled myself together! I'm left wondering now.....

Did the walk just over do it and now I'm paying the price? Was this sensory issue just starting as I had the op and I just need to get it over with? Or, have I re-stenosed?

I'm sitting here on Easter Sunday numb from the pelvis down, stiff and don't know what to think. I asked Dr Sclafani if it's possible the femoral nerve could have been damaged and he said yes, but I don't really think thats the case.

On the upside, there WERE improvements and thats for sure. This does work. It isn't a miraculous cure, but it does improve different issues for different people and I will go back for stents if sadly things don't pick up. But I suppose it has only been 5/6 days............

Claire
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Postby Vhoenecke » Sun Apr 04, 2010 11:59 am

Keep your chin up Claire. These symptoms may just be temporary. If we could get looked at in our home countries we would be able to have these issues addressed. You may have to go back but I will cross my fingers that the pelvis problem will get better.

Val
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Postby magoo » Sun Apr 04, 2010 1:18 pm

Claire,
It sounds like you most certainly overdid it. Your body needs time to adjust. I was the same after my procedure and wanted to use all of the extra energy I had. I too was setback a few times. Let your body rest and I am sure you will feel better. It does take time. I know it seems many have immediate results, but most have setbacks. Be well.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Ruthless67 » Sun Apr 04, 2010 1:34 pm

Hi ClaireParry,

Thank you for posting the "good, bad and the ugly" (Can't even feel when I need to open my bowels) post-procedure. This is important for all of us pre-procedure to be aware of. And take Magoo's suggestion to rest and let your system equalize itself.

I understand the pity party myself as I only too recently went there because of new MS symptoms. As I lay on my bed crying and feeling sorry for myself I saw my mother and mother-in-law. They each were an example of dignity through pain as they lived the last months of their respective lives. And I wondered what advice they would give just now and it came through load & clear. "Suck it up and move on, go wash those dirty dishes!" lol.

There was a sentence I came across recently that I'd like to share with you.

"Pain is just weakness leaving the body".

Now I don't hold that true for all pain, but I like the sentence, none the less.

Respectfully,
Lora
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welcome home Claire

Postby cervin » Sun Apr 04, 2010 2:28 pm

Breathe, trust, rest and give your body time to adjust. This is what i keep telling myself and now things are beginning to shift for me. When i got home my legs were more shaky than ever. Starting just last night the shaky legs started to become more stable. I looked at my feet and they were less blue and puffy. It's not the miracle i was hoping for, but it's an improvement.

Girl i say you overdid. now rest.
-ceci

In case you are having trouble placing me, we met your first night at the SkyBar. I'm the girl rocking the sweet wheelchair. :)

write to me, i would love to keep in touch. ceciervin@gmail.com
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Postby hope410 » Sun Apr 04, 2010 2:31 pm

(((((ClaireParry)))))

Sounds like quite the roller coaster you've been on!

Your veins may have constricted again, but with what it sounds like are brand new symptoms (I wouldn't think it was femoral nerve since that's a periphery nerve and so wouldn't affect both sides of body), it sounds more like something is going on in your central nervous system.

If you were still in Katowice when this was happening and you were worsening, were you not able to go for examination to see what was going on?

Please take care. I am sure your emotions are at an extreme point after your experience. Thank you for sharing.
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Postby CureIous » Sun Apr 04, 2010 4:48 pm

I'm dang proud of all you guys and gals that took the plunge half a world away. YMMV applies here, most definitely. Everyone's experience will be different, some immediate and some it takes longer. Some are reporting no disease progression many months after the fact, and of course all points in between. It's hard not to overdo it the first few months, even with my stents virtually guaranteeing a free flowing pathway, there was still some ebb and flow the first few months but overall it was piling up in the + column! I tried to stay calm about it all and just let whatever happens happen, but it's hard not to get excited when things start to get better, and even harder not to panick when new or weird stuff happens too. So I basically gave myself 3 months leeway to REALLY get excited, and ride out whatever happened in the interim as a transition phase where the body gets used to flow going in and out like it hasn't in a long time.

Keep up the good work! :)

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 » Sun Apr 04, 2010 5:49 pm

Dear Claire,

I'm so sorry to hear about your new symptoms. Mark had some good advice: take three months, ride anything out that comes up, re-evaluate. I've found that there are ebbs, flows, and some stabilization of some improvements. I take it all as if it could change at any moment and hope it doesn't.

Becky seems to be doing the same thing. Fortunately, I don't have to go back to work for another week. That should help things stablize more. Unfortunately, Becky does have to return to work tomorrow. She could really use more time to recoup, if nothing else, from the trip home and being up 24 hours straight, not to mention the jet lag and recouperation from the procedure. She is much more alert and less tired most of the time, but the fatigue still comes and goes some. Of course, she went full speed when she first got home.She did run with her dog, today, something that would have been impossible before the procedure.

Rest, rest, rest seems to be the byword. The big thing I have realized is that if we backslide, at least we know how much we really can improve when the veins are truely open. I so hope that your initial gains return soon.

Katie41
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Postby ClaireParry » Mon Apr 05, 2010 1:32 am

Thanks for all your supportive replies. It really helps.

I think that these new symptoms are disguising any improvements I did have and so as you all say rest, rest rest.

hope410 - it's not so easy while there to rearrange another consultation. I did try as did others and failed. It's a shame. My feedback to them will certainly say that we should have dopplers before leaving. Of course they could collapse as you leave the room but it would be some reassurance.

Ceci - Glad you are seeing something now, will def keep in touch!

Katie 41 - I'm so pleased Becky is feeling the benefits. She had a tough ride! Do you still feel that there may be a problem with one of your jugs or have things resolved?

Magoo and Val - thanks for your kind words. It really helps to nhear from other CCSVI'ers.

Wise words indeed Mark. I will ride it out and give it time.

LOL at Lora. I will indeed 'suck it up' and get on with it ROFL.

Will post in tracking to keep things updated.

Claire x
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Postby sunlounger » Mon Apr 05, 2010 5:06 am

Hi Claire,

thanks for sharing
hope you start feeling those improvements again soon :D

best wishes
You might find that you’re not lost
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Postby Pepe » Mon Apr 05, 2010 12:09 pm

Hi Claire,

Be patient!
In few days you will be better!

:lol: :lol: Be carefull with the shopping negative side effect! :lol: :lol:

Take care!
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby Mutley » Tue Apr 06, 2010 5:21 am

Hi Claire,

Firstly, a big well done for getting over there and doing something so positive. Sorry to hear that you aren’t feeling so good though. I know what it feels like to start seeing improvements but to then see them fade away. Like many people here I really do hope that this is just temporary and that you will pick up soon though. But even if things don’t go as well as you’d hoped, try not to despair. You always have the option of a return visit and explore some options. But in the meantime, give yourself a treat and get some rest.

You take care.
x
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby openmind » Tue Apr 06, 2010 9:09 am

i too thought about the repeat scan before you left Poland but I suppose this would take up more valuable time and it would indicate that they dont think it is going to work which they believe whole heartedly that it will work it is just us that worries that it wont :wink: i am exactly the same, on a roller coaster, one minute :lol: :lol: when something good happens and the next :( if it goes backwards again but read Rhondas fantastic post about 5 1/2 months after operation and see the rewards we can have. We still have option of stent.

Love Jo xx
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Postby magoo » Tue Apr 06, 2010 9:28 am

I have every hope that you will begin to feel the improvements and get stronger! You just have to be a little patient :D It was so hard for me, but good things happen when you pamper your body after the procedure.
Thanks Jo!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby xia » Wed Apr 07, 2010 7:50 am

Hi Claire,
I hope this finds you resting up and feeling positive :)
It was great to meet you out in Poland, it helps meeting like minded people.
Since getting back I needed to catch up on some much needed sleep and the stents are still quite painful! My improvements are small and I too feel set back at times. I guess its going to be a slow process...
Some sunshine would help :)
Take care and keep us updated :)
Regards
xia
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