CCSVI - Aussie Action!

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

Postby Brainteaser » Sat Nov 28, 2009 5:57 am

It's now Saturday afternoon in Katowice; almost four days after my operation. We are packing up getting ready to head back home tomorrow morning, Katowice to Frankfurt to Bangkok to Melbourne. Not looking forward to the horrendous Frankfurt to Bangkok leg; will probably be a full plane. We've tried to upgrade to give me more space and comfort, but not sure yet as to the possibility of this. I'm feeling ok, no significant changes from previously. My hands are still warm, which is good. Meeting up with Dr. Simka this afternoon for final discussions. The news regarding Radeck hasn't helped - one more consideration with this procedure. But hopefully, all goes well and I'll speak to you again from Oz in a few days time.
Cheers,
Phil
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Postby whyRwehere » Sat Nov 28, 2009 6:49 am

I am very happy for you, after your bad experience in Australia. Please let us know you are well, when you arrive back home.
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Postby Arcee » Sat Nov 28, 2009 8:13 am

Phil, safe and easy travels home for you. How great will that feel to be back home :D Hoping for continued improvement for you.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby wonky1 » Tue Dec 01, 2009 12:46 pm

Hi Phil, it was great meeting you in Katowice, all that chatting sure helped.
If I had been alone I may have been more concerned about my impending treatment.
I hope your flight was O.K. your jet lag isn't too bad and that you continue healing when you've had a good sleep.
All the best.

Wonky
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Postby Brainteaser » Sat Dec 05, 2009 5:47 am

UPDATE

It's now 10 days since my CCSVI treatment in Katowice.

My assessment of the Polish CCSVI setup - 8 out of 10.
My assessment of physical improvements so far - 1 out of 10.

Things that have improved include -

* my voice is stronger, possibly linked to more stomach muscle tone.
* more colour in my face, lines gone.
* collateral veins of neck disappeared.
* red/blue appearance of hands reduced.
* hands warm; no longer cold.
* a bit more mental energy and enthusiasm.

Bearing in mind that since the operation, I had 2 days in hospital, 2-3 days in Katowice hotel, a flight home of all up 35 hours and 4 days at work. It's now Saturday here and I have a couple of days break.

Overall, I feel more lethargic, spastic and weaker than before I went away, especially at night and early morning. Things vary however and at times I have more pep.

I'm taking the blood thinners at 9pm.

Possible explanations -

1 lingering jetlag, although I have always travelled well.
2 the blood thinners which my pathology nurse says can make you weaker, athough Rici and Erika seemed to do OK.
3 they didn't pick up all the stenosis.
4 the Melbourne summer heat but it is cooler now than before I went away.
5 other.

Because of the way things unfolded, I'm leaning towards 3 but not ruling out 2.

STENOSIS, TESTS AND TREATMENT

As advised, I had one stent inserted at collarbone level in the RJ, in Poland for a faulty valve and nothing done to the LJ.

This was the outcome following various diverse test results as follows:

RJ
* Zamboni's August Dopplers showed reflux.
* Melbourne VS October Venogram showed collaterals but he not sure what he was doing.
* Simka's November Dopplers showed reflux.
* Katowice MRV inconclusive but Simka thought perhaps a high stenosis.
* Katowice Venogram showed lower valve problem which was fixed.

LJ
* Zamboni's August Dopplers showed complete blockage.
* Simka's November Dopplers showed no reflux - he thought that Melb VS may have pierced a membrane with his catheter in October.
* Katowice MRV inconclusive but Simka thought perhaps a high stenosis.
* Katowice Venogram and Post-op Dopplers showed no reflux.

Azygos
* Results of all tests inconclusive and no treatment.

I believe the doctors in Katowice did the best they could under the circumstances - my case may have been more complex than others.

BLOOD THINNERS

The blood thinners prescribed and obtained in Poland are:

* Fraxiparine (Clexane) injection daily, .6ml for 2 months.
* Araplex tablet daily, 75mg for 6 weeks.
* Aspirin tablets daily, 150mg for life

In addition there is Helicid, a stomach liner for 2 months. Note - no warfarin prescribed.

Despite having a number of body bruises, the local pathology company, (Dorevitch) have backed off from assisting me. They tell me today my INR level is 1.1, the blood is thick and I should be on warfarin for an INR of 2.5-3. I will contact Dr Simka to resolve. Dorevitch say they cannot comment on the other bood thinners and the only standard is warfarin. I suspect that my levels may be OK but they are not telling me for commercial reasons. My blood thinners may be causing lethargy.

Any positive feedback regarding the above welcomed........even from old bob if he can drag himself away from the Krishna Temple. :wink:

Phil
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Postby Algis » Sat Dec 05, 2009 6:28 am

Glad to read from you Phil :)

That sounds good; only few days; you had lots of pressure, stress, time lagging, work etc... Sit for the weekend and look again maybe?

Thanks for the feedback; I was waiting for it :)
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Postby LR1234 » Sat Dec 05, 2009 6:52 am

Hey Phil,
I was hoping to hear that you had some more obvious improvements.

Maybe in time things will improve more.


Overall, I feel more lethargic, spastic and weaker than before I went away, especially at night and early morning.


I don't know why you have this.....lets hope that it is temporary
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Postby mrhodes40 » Sat Dec 05, 2009 7:59 am

double post :oops:
Last edited by mrhodes40 on Sat Dec 05, 2009 12:23 pm, edited 1 time in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrhodes40 » Sat Dec 05, 2009 8:07 am

I definitely felt lethargic when on blood thinners personally and felt improved in that arena when I was allowed to go off of them. And let's also be clear that this is still surgery, not a day at the spa. Bodies need rest after anything like that.

Your comments on having warm hands and a fresh looking face reflect my early experience as well. I STILL do not get freezing cold in the car all the time as I used to. My car used to be on max heat all the time, now I find if I cranked it up to warm the car when it's cold, I will soon be turning it down.

It would be worrisome to think maybe they missed something, but man at this stage in the game, people have limited experience, so it is a concern.

Phil, did they not do dopplers before you went home to check for reflux and make sure the blood flow was restored to normal smooth flow? Are you getting a recheck in a couple months of any kind?

It would be a comfort to know that blood flow was corrected to a more normal state. At this point in time without knowing if this *will* help MS at least we'd like to know that the minimum standard for this procedure, good blood flow, was met.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby wonky1 » Sat Dec 05, 2009 8:25 am

Hi Phil
I'm tired too and I'm sure its the drugs. A common side effect so I read.
I perked up to start with but I'm tired now, not fatigued though.
I have dark blood in my urine so hopefully the INR check will confirm that I can lessen my intake a bit. I have a UTI so that may be why.

MrHodes, they didn't confirm proper flow before I left, although I guess that was part of the procedure as I have a cd of my venogram which shows flow a plenty. How about you Phil?
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Postby ErikaSlovakia » Sat Dec 05, 2009 8:56 am

Well, maybe I am not completely normal - which might be true :D
I swear I did not and still do not feel lethargic or tired due to Clexane - just nothing. I did not go to check my INR. So far so good.
I think each body is different.
Phil, do not worry, just take it easy. If I had to count it your way so I`m 2 of 10.
I am not sure, but I do not think there is something you should or you should not feel.
To be honest I was expecting something like very slow improvements during one year. Well, it was different, I am sure I have more energy, I do not feel fatigue since the first day and I am sure my heart beets normally not too fast since the first day.
But I still have many MS symptoms. Like I am sure I would not be able to work every day full time. I would like to but I simply must be patient.
Erika
Last edited by ErikaSlovakia on Sat Dec 05, 2009 12:01 pm, edited 1 time in total.
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 Lyon » Sat Dec 05, 2009 9:06 am

.
Last edited by Lyon on Tue Nov 22, 2011 3:41 pm, edited 1 time in total.
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CCSVI / Doppler testing in Melboure

Postby ScottandHannah » Sat Dec 05, 2009 2:57 pm

Hi Brainteaser (and everyone) - I've just read this whole thread and it's brought both tears of joy and sadness to my eyes. My wife is 25 years old and was diagnosed with MS about four years ago. She (Hannah) is an Aussie but we have been here in my hometown of Toronto for the past 3 months. We watched the W5 CCSVI doco two weeks ago and have been in high hopes ever since. We are heading back to Melbourne for good on December 27th and could really use some help as to how to go about getting Hannah the Doppler tests. Any help would be greatly appreciated. I'm really pulling for you Phil and will check back regularly to check your progress.

Cheers,
Scoot & Hannah
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Postby Johnson » Sat Dec 05, 2009 3:53 pm

Phil - you sound to be doing at least 10% better, and that is great by any measure. If I haven't mixed you up with someone else, I understand that you have had, er, you had CCSVI/MS for 27 years. I would suppose that the more "damage", the longer the healing process.

Perhaps some stenoses were missed, but you are having some improvement, and that will hopefully continue apace, and the science can catch up. Hopefully, in the next year or two, the diagnostics and procedure will be perfected, and we can get the tune-ups we might need without having to sell our children.

If we still have iron deposits, or whatever, after the blockage is cleared, we will need to chelate those, and encourage our brains to re-wire. Physio, speech therapy - whatever our individual needs, will help, I'm certain. Jill Bolte-Taylor had to re-learn how to walk, talk, and I'm sure much more, but she did it. If I remember correctly, it took her 7 years to get to her present state, and she is not 100% yet. And that was a massive stroke...

Is it CureIous that had his first symptom in 2004, DX in 2007, angioplasty procedure 2009, and is 100%. Perhaps less iron build-up in 5 years than 10, or 20, or 30 years, and hence the faster total remission.

We are all rooting for you. I am sending you some of the golden light.

Thank you for sharing your experience.
Last edited by Johnson on Sat Dec 05, 2009 5:20 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
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Postby seeva » Sat Dec 05, 2009 4:05 pm

Brainteaser wrote:In 2 days I have a consultation with a Melbourne vascular surgeon. So far, he seems interested in CCSVI. I've sent him all the documentation. I understand that he recently saw Dr Simka's presentation in Monaco and he may have met Prof Zamboni.

Knowing how you Americans are pretty good at selling anything to anyone, :wink: my enquiry is - what are the key points to raise with my bloke which might entice him from ladies legs to hairy necks! :?:

I can't see that $ would be the main attraction - they do well already. Also 'sympathy' is not something I've experienced too much with the medical industry - a 'sympathetic doctor' might be one for the oxymoron list. :roll:
HI PHIL My name is SEEVA from SYDNEY andI like to contact the melboure
No, there must be other incentives............

Dr Dake and others have come onboard with CCSVI where I imagine they might have plenty of other patients to take care of.

Perhaps it is the notion of getting involved in something new and exciting or making their mark on the World stage.

So what can we do or say to get vascular surgeons excited about CCSVI?? :?: :?: :?:
"
HI PHIL MY NAME IS SEEVA FROM SYDNEY and i like to contact the MELBOURE DR.Please let us have the details
regards
SEEVA
hil
:roll: :roll: :roll: :roll: :roll:
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