CCSVI - Aussie Action!

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

Postby ErikaSlovakia » Sat Nov 14, 2009 3:24 am

Brainteaser wrote:* Post-op - I'll have the treatment early in the week and then 3-4 days observation before coming home. I'm certain Dr Simka and his team are skilled professionals who will make sure that going home will be safe and comfortable. But what happens then? That's what I'm not sure about - especially with a hostile medical profession over here. Any advice or tips from you CCSVI graduates, welcomed.

Keep you posted.

Phil

Hi Phill,
I do not think it is a problem. Well, in my case it was not. I was even able to travel to Slovakia next day by train. Of course, I did not want to risk anything. I did not know my body `s reaction to Clexane to after procedure, but everything was fine. Of course I was slowly and some of my bruises were little painful. But is is OK to sit in a Taxi or in train. People helped me with my little suitcase.
Anyway I spent almost whole three days after my procedure in Katowice. I could return to hospital to ask for help anytime but it was not necessary.
I went to see my GP after I was back home just to say hello, I am done, she new about it but she did not know the date. I only showed her my little wound - the small place where they entered with the catheter it is in my groin. It was fine. I told her I do inject Clexane - I do not have any problems with that. I just asked her for the prescription of 150 mg aspirin as I thought I would have to take it longer, I will have to ask Dr. Simka for how long, because I forgot to ask, but I still take 150 mg of aspirin once a day.
An angiologist wants to see me and he would like to be informed, so I will go there next week - it is only 33 km far from my town. I do not need him to check me but he could do it in the future. They also have MR there and he is actually also doing these kind of procedures. So try to do the same trick. At least one angiologist will be informed. But as you may be remember my traveling around almost whole Slovakia, more radiologists and angiologists are informed. Only a few neurologists. I do it step by step. I do not want to shock them too much.
But I really fell fine - I mean my after procedure status. Of course I still have MS problems, but even that is better.
I know it is easier for me I go to Poland in January - my trip is not that expensive as yours. I am sure you will always have the possibility to consult Dr. Simka.
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 LR1234 » Sat Nov 14, 2009 3:45 am

Hey Phil,
Thats Great you are going to see Dr Simka:) There is only one thing that worries me and that is the long flight back to Oz.

Please check that the pressure changes will not be a risk to you for such a long period of time.
After the procedure I am going to try and stay in Poland for a few days then head back to the UK, the UK is only a 3 hour flight so hopefully I won't have a problem.

L
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Postby Brainteaser » Sat Nov 14, 2009 7:00 pm

Thanks everyone for your best wishes. :D

- whyR - I know what you mean re Paris. But for airlines, I have found some of the Asian carriers are especially good to the disabled.

- Erika - thanks, some good tips! I'm wondering if we have Clexane in Oz. I've no problems with injections. What happens in the US? - injections or tablets; I can't remember. Sounds like you only hit your GP with it after the procedure. Maybe, that's the way to go. It means they can be part of the rehab process, but they're saved from any responsibility.

- Ernst - (I've been waiting to use this....) No Worries Mate!! :D
To be honest, I'm not sure how things will go, but I think we all have very high regard for Dr Simka. The arrangements such as flights etc are not that difficult to organize. Picking the right seat is important.

-LR - I've been wondering about the flight back, myself. Prof Zi and Dr Simka think it should be OK. How much evidence is there regarding a problem of pressure changes? I'm aware that some others have had long flights eg Gibby. In fact, it won't be one long flight, but 3 flights with stopovers of a couple of hours between.

Phil
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Postby CureOrBust » Sun Nov 15, 2009 1:47 am

Once again, you are a trailblazer and inspiration. Good luck, and ALLLLL the best wishes.

I see one of my neuro's tomorrow, who did show some limited interest in this work. Hopefully I can present to him enough movement / developments to get some more commitment. Your story will definitely be on my lips.
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Postby ErikaSlovakia » Sun Nov 15, 2009 2:04 am

Brainteaser wrote:- Erika - thanks, some good tips! I'm wondering if we have Clexane in Oz. I've no problems with injections. What happens in the US? - injections or tablets; I can't remember. Sounds like you only hit your GP with it after the procedure. Maybe, that's the way to go. It means they can be part of the rehab process, but they're saved from any responsibility.
Phil

Hi Phil,
but it was Dr. Simka, who gave me 60 injections. I only informed my GP about it. She trusts me, she knows I would not do any stupid thing.
It is better if you buy it in Poland.
I think, but I am not sure, they use Coumadin in the USA because it is cheaper and Clexane is very expensive. But some US patients should correct me because I might be wrong. How is it in Australia with it?

My GP is also in contact with the angiologist I go to see next Tuesday. He is also very interested.
So far I was quite lucky with the doctors here. At least they were interested and except of one neurologist all of them wanted more info.
I think, my 2 University degrees help me as well. I have Ing. before my name and an MBA after my name. I think they believe an educated person would not write them any unimportant things. So they read it and at leas think about it.
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 CureOrBust » Sun Nov 15, 2009 11:32 pm

CureOrBust wrote:I see one of my neuro's tomorrow, who did show some limited interest in this work.
I think he is prepared to perform the Dr Haake protocol for SWI & MRV, I have to send him the details to discuss with the radiology lab. He had also been contacted by a vascular surgeon I had spoken to.
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Postby Brainteaser » Tue Nov 17, 2009 6:09 pm

I've bumped this up for Mutley, to save time looking.

Thanks for your good wishes, Cure - if all goes well, we'll try and hijack Dr Simka back to Oz with us. :wink:

Erika - Wow, an MBA!! - beauty and brains!!

2 days to go before we head off - have I got everything? Any last minute tips? Must remember to get up and move around a bit in the plane, especially on the way back. Anything special to take? - long way to come back if we leave something home! :roll:

Cheers,
Phil
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Postby gibbledygook » Wed Nov 18, 2009 5:56 am

Good luck Phil,

I had a good week after the operation in the US before taking the flight home and I was on warfarin, plavex and low dose (81mg) aspirin for several months afterwards. I couldn't have managed a long haul flight immediately after the op as it was quite a biggie! If you have stents put in make sure you are on enough blood thinners afterwards for the flight as long hauls are bad for thrombosis. And try to stretch the legs a bit on the flight. Good luck, this is very brave of you! You deserve a good outcome after your previous experience.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby CureOrBust » Thu Nov 26, 2009 2:23 am

Ok, who were they talking about here?
There are also doctors in Poland, Ireland and Australia investigating the diagnosis and treatment of CCSVI in MS patients.
or was this simply off the back of people who had posted here in trying to get dr's to investigate (in australia)?
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Postby Brainteaser » Thu Nov 26, 2009 8:07 am

I had CCSVI intervention treatment at approximately 5pm on Tuesday the 24th November 2009, involving one stent being inserted into the right jugular. The valve of the right jugular was faulty; this valve is at collarbone level and was causing the reflux. Dr. Ludyga inserted a stent and immediately the right jugular worked properly and well. Dr. Simka and Dr. Ludgya thought that the left jugular was working properly and required no treatment. Following the operation, which the team considered a technical success, I've been recuperating in hospital for two days and have just arrived back at the hotel in Katowice.

Prior to the treatment, Dr. Simka gave me a doppler assessment and subsequently thought the main problems were with the right jugular and organised an MRV for Monday 23rd November. There was some uncertainty associated with the results of the MRV. The doctors thought a more accurate insight would be obtained from the venogram at the time of surgery.

So, things seem to be going quite well and the doctors appear quite happy with the results so far. There have been some small noticable improvements, for example, the collateral veins of my neck have disappeared, my voice is stronger and some sensations in my head I have been experiencing for the past year have disappeared. I'll be on blood thinners and the doctors will monitor how things go for a few days before we go back to Australia.

Yesterday, whilst recuperating in hospital, Wonky1 (Martin) arrived from the UK for his treatment. It was great meeting him; we had lots to talk about. He's gone in for his MRV and operation today, and I wish him all the best.

I'll follow up in a day or two with further feedback of my progress...

Cheers,
Phil
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Postby ErikaSlovakia » Thu Nov 26, 2009 8:30 am

Dear Phill!
Yes, yes, yes :D
I AM SOOOOOO HAPPY FOR YOU :D :D :D
So you had similar problem as I had on my left side.

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 ozarkcanoer » Thu Nov 26, 2009 8:32 am

More good news from Brainteaser !! Take it easy and keep us posted on your recovery and any noticeable improvements in your MS symptoms. You know we are listening here on TIMS and are always anxious to hear about progress from "The Liberation Treatment"

ozark
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Postby mrhodes40 » Thu Nov 26, 2009 9:02 am

it is really great to meet people isn't it? You guys are something I am thankful for today :D
Good job going for it Phil.. I'd say try to get an upgraded seat on the plane home so you can move around more and keep the blood moving and drink a LOT of water that thins the blood too.
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 CureOrBust » Fri Nov 27, 2009 12:59 am

Brainteaser wrote:I had CCSVI intervention treatment ...which the team considered a technical success ...There have been some small noticeable improvements
Good to hear things went well.

However, I am a little confused regarding your left jugular.
Brainteaser wrote:Dr. Simka and Dr. Ludgya thought that the left jugular was working properly and required no treatment. ... main problems were with the right jugular ... There was some uncertainty associated with the results of the MRV.
I assume all the doubt about the left jugular has been settled?
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Postby kinga » Fri Nov 27, 2009 1:42 am

Brainteaser I'm happy everything went well! I wish You smooth recovery! "good luck" for Wonky1!
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