Zeureka and others in Katowice 26 May

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Zeureka and others in Katowice 26 May

Postby Zeureka » Thu May 27, 2010 10:18 am

I had my percutaneous balloon angioplasty of left and right jugular vein yesterday (26 May) and wanted to share my first monitoring of sensations with you:

Some improvements noticed until now for myself:

- decreased intensity of pins&needle/swollen hands sensation in my both hands (stiffness sensation gone, and pins&needles very much lighter). This quite amazed me as sensation decreased immediately post-angioplasty with time...I could hardly sleep since the sensation was so exciting getting better every hour...and now 24 h later feel really none of this swollen hand feeling anymore, just still a bit very light tingling...
- my feet were boiling hot immediately after the angioplasty
- increased bladder control (had opposite of urinary frequency before) immediately during the same night and also today. Lets hope will remain...

I cannot judge on fatigue/instability yet, as today got very tired (but guess this can be judged as normal 1 day post-angioplasty and not having slept that much in hospital!), rested a bit and now woke up with a strong headache. Directly after he angioplasty felt very alert though. Cannot really say that any change of numbness in my feet, although they feel a bit lighter, not so heavy icy blocks as before.

So the first signs are already very positive! And hope over the next month-3 months and further-on I will understand whether there is further impact on pins&needles in both hand/feet/numbness in feet and/or my fatigue/energy.

Most amazing - and we are all so happy/excited for her - were the improvements of a friend who shared the room with me. Already yesterday evening she felt changes in some of her feet/tummy numbness, also colour of her palms of hands had changed - and this morning at 6 she managed to get up from bed all by herself, was standing stable without holding anything and managed to walk (obviously still slowly) without her crutches to the bathroom. We saw her the days before in the hotel and she could not get up, nor walk without her crutches. Today outside she walked a bit better with her crutches. And yes, this is just the beginning of it all!

I will soon also fill in my tracking project. And report if feel anything new, whether positive or opposite.

We have been around 14 from outside for the procedure in Katowice his week (all Canadians, 1 New Zealand and me the only European - but s.o.from Paris arrived yesterday was told).We have been told that there have now already been around 500 interventions. The medical team, interviews/forms to be filled in and tests done prior to the angioplasty are very professional, as is also the organisation. There are now 6 vascular surgeons + anestesist + many nurses and the management team is currently composed of 7 people + they have an office in the Qubus hotel. Since around 3 weeks a neurologist is also included in the process who has interviewed us prior and post-intervention. Eye-tests are also performed for research purposes before and after 6 months.
Last edited by Zeureka on Sat May 29, 2010 2:14 am, edited 1 time in total.
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Postby esta » Thu May 27, 2010 10:48 am

congrats zeureka, keep us posted whenever you can.

...its like a snowball going downhill and gaining momentum every day. it seems to be mostly canadians, so come on canada lets start studying the ones who've alreay been liberated, the list is getting embarassingly large...
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Postby Cece » Thu May 27, 2010 10:48 am

that is excellent...congrats, Zeureka...and Melini's story is heartwarming, thank you for sharing that!
"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 ErikaSlovakia » Thu May 27, 2010 11:08 am

Thanks for your report. I am really glad you can already feel some improvement!
Wow - 500! I was only #2. Of course I am happy about this.
However I would be happier if each country had at least one clinic doing this procedure.
Just do not forget to take it easy :wink: I still remember my setback in January, Febraury and part of March.
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 Pepe » Thu May 27, 2010 12:27 pm

:D :D :D Congrats Steffi :D :D :D

All the best to you!

Maria have just told me to send you a grande abrazzio!

Take care!

Pepe and Maria.
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 broomdancer » Fri May 28, 2010 4:49 am

Wonderful news Zureka! For those of us yet to be liberated, it gives us hope and excitement for the future. Please keep us posted.
Take are Diana
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Postby costumenastional » Fri May 28, 2010 5:37 am

My dear friend...congratulations. I wish you my very very best. Thank you for posting.

Give it some time and keep it real. Good things will happen.
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Postby Zeureka » Fri May 28, 2010 4:13 pm

Thank you all so much for all your nice wishes! Last night slept like a baby and woke up with lots of sunny energy - I was looking forward to leave for Krakow for sight-seeing with Canadian friends today and it was more than lovely!

A funny thing I wanted to share with you! The neurologist with whom we all had a follow-up meeting in our rooms the following afternoon of the procedure told us all: that the improvements we would feel immediately would be very nice but all be placebo effect :lol: . That he would be so happy for us if we already feel better with some slight improvements, but that the real ones were to be expected in 1-3 months to come!

Oh well, at least he encouraged us! I had actually a very constructive discussion with him, the best I ever had with a neurologist although he excused himself on certain view-points, as that CCSVI not proven unless clinical trials will prove, and that I HAD to understand that he HAD to see it like this from his neurologist viewpoint...but he then understood that I also HAD to see it the other way round from my MS patient viewpoint ;-)

He admitted when raised some examples that also on basis of auto-immune neurology not everything could be explained yet on processes of remission...and that one does not exclude the other, that MS is progressive and we have little time to loose to wait for another 5 years of research. In addition when said, "Common, you see the procedures that have been done here already on 500 people, and see they are simple and no way dangerous - so thank you for giving us this chance!" he was, yes, really nodding silently...

I saw him even a bit moved when he left from my room. I was the last one he talked to I think - after his day of talking to all these convinced CCSVI MS patients the day after the procedure (at dinner afterwards some others told me they had put forward similar arguments to him, well we are all well TIMS or otherwise common-sense trained ;-)))

...and he had in particular seen my friend standing up before him (she told me afterwards he was quite impressed when she suddenly stood up before him - surprise! And I also showed him my video that I had done of her getting up all alone and walking slowly without crutches in the morning directly after the procedure)

...that he admitted certain things that have only been stubborn blocks for other neurologists/doctors talked to was very positive for me! Well I guess there is a reason why he agreed to cooperate in the Euromedic research, but still you see, still not really convinced... seems to be really difficult for them...
Last edited by Zeureka on Sat May 29, 2010 2:16 am, edited 3 times in total.
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Postby Katie41 » Fri May 28, 2010 4:22 pm

Zeureka, I'm so happy for you! Sounds like a great beginning! Onward and upward! :D
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Postby Whitey » Sat May 29, 2010 9:07 am

Thank you so much for poasting about your visit with the neurologist.

We are all creatures of habit, and sme of those habits are ingrained in us from our professions. It is incredibly hard to try and break free from a lifetime of that process of thinking. It's good to see that although he must put forward the viewpoint of placebo and "wait and see" approach for results, that he actually understands the merit of this if it were to be clinically proven, and that MS'ers cannot wait for every study uner the sun to be completed before they are treated.

I only wish our doctors here in Canada could see it similarily...
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Postby Zeureka » Sat Jun 05, 2010 2:33 pm

Indeed onward and upward... I havn't been posting since facing strong headaches of all kind over the last days - going onwards and upward...stronger and again weaker...
other issues that felt from the start such as less pins&needles in my hands, improved bladder function, but my feet still the same numbness - have not really changed. I had the first two days at home that I felt full of energy and without instability/tiredness and this was maybe my dilemma to get worse again, as I did not rest...

The weard thing is that I have never been a migraine person...and the strength of some of these headaches have been going through the last days is quite violent. I never had THESE TYPE of headaches and never at such a strength in my life...only light migraine or there and then a light pressure headache.

Lets try to summarise this week:

-> I felt marvellous until Monday
-> on Tuesday went on a business trip to Parma and a strong migraine started on the train in the evening back home...similar to the one I had second day in Katowice (I now know I should not have gone on a business trip straight away, but I felt so good, full of energy and invulnerable!) - not only my head felt like burning inside, but also burning sensation in neck and hands...
-> The next day (Wednesday) felt better again, the headache and burning sensation gone again.
-> But on Thursday afternoon (after working....oh gosh - see needed rest...) it started allover again with burning in my head and also suddenly had back instability when walking in park at a children's party.
I went to bed VERY EARLY, but that night woke up at 4 am all sweat, I think must have got anxious about this burning head sensation...
-> on Friday morning felt however a bit better - the burning was finally gone, but then in afternoon again experienced another type of headache, like a pressure around my brain with pain both sides of head. Again to bed early...
-> today (Saturday) it was then limited to pain/pressure on the left side that went up behind my left ear. I was most of the day resting...I also tried to reach Euromedic this morning, but only reached the clinic and they said should call Marta, but to reach her on saturdays difficult.

I should have called before for advice. But I thought it might have to do with the bloodthinner medication and/or weather change in Italy from foggy/rainy to suddenly hot and sunny...and wanted to wait a bit hoping would go away...but now I'm off the blood thinner and still have these nasty headaches...

I've taken ibuprofen, which helped to minor/even eliminate the headaches for some hours, but then they seem to come back. Monday I will call Simka for sure to get advice if OK continue taking ibuprofen and if they had other experiences like this...I have now seen transient headache cases listed in Simka’s presentation of „Preliminary results of preoperative diagnostics and endovascular treatment for CCSVI” (shown February 7th, 2010 in Canada, Hamilton + viewed on the Euromedic web-site). - so also better to tell him that I'm another case...

Here paste number: 6) Endovascular treatment – complications:
1 minor bleeding from puncture in the goin - 2 days postop,
1 gastrointestinal bleeding a week postop,
transient headaches following procedure in some patients.

So I hope this is indeed transient and that next week my head back to painless...certainly related to stress - I should have rested more...and/or maybe intolerance to the Fraxodi blood thinner that needs still some days to go away? And I have been wondering: Is my brain maybe struggling/requires some time to adapt to the new blood-flow dynamics???

Anyone had similar experience? - apparently from Simka's review, "some others" had?
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Postby L » Sat Jun 05, 2010 3:28 pm

I'm so happy for you that there have been improvements. Hopefully the head aches are your body adapting to increased blood flow and will prove to be transient. Fingers crossed.
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Postby Zeureka » Thu Jun 10, 2010 8:45 am

Just to remark that my headaches are getting a bit better - today only still a bit left-sided at my temple (but somehow it seems now more linked to left jaw nerve pain that got since 2 days - and it does not seem to be the teeth I checked it out with the dentist yesterday). The jaw pain might be related to anxiousness that I had from the strong headaches before. Today managed to work without pain-killers. At least have impression that in a while could disappear completely...

I have contacted Euromedic start of week and they advised me to take Paracetamol/Ibuprofen also OK, but it seems Aspririn shortly after the procedure to avoid, since a strong blood-thinner.

Otherwise still feel generally more energetic, no brain-fog/dizziness and had no fatigue/instability spells as commonnly (lately always?) had in afternoons. Weard to say that I prefer a light one-sided headache at my temple and feeling "present in this world" to the fatigue I had before...also because I have hope that as soon as the headache will disappear completely, I may feel much better than before!

I have to admit that my feet are just as before, no change - I still have numbness in some of my toes and parts of my feet and also a bit feeling of more stiffness in my feet. But I can as before walk normally (noone sees that) - I have not tried aquagym back yet, because did not want to stress my body too much now, but I may try again next month to see how it goes. So as long as does not progress I can live with those feet, since no pain. My hands also still feel a bit swollen but the pins&needles are less than before (while in my feet no change on that).

However, the symptoms that were most annoying for me before were those frequent fatigue/instability/vertigo spells - and to feel again fully part of this world, even with a light headache, gives me a lot of positive energy! And lets see the next weeks/months to come...
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Postby Zeureka » Sun Jun 13, 2010 7:01 am

My headaches much better, nearly gone... - it's going upwards! :D
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Postby Shueywho » Sun Jun 13, 2010 7:13 am

That's wonderful the headaches are leaving now. Chin up. Thank you for keeping us posted. Cheers to you!
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