Badgers wonderful adventure in Poland!!!!!!!!!!

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

Postby magoo » Mon Apr 12, 2010 6:03 am

Awesome Badger!!!!!!!!!!!!!!!!!!
Fraser, there are lots of us with stents doing 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 Badger » Tue Apr 13, 2010 12:29 am

Hi,
The sun has gone for now but I had another full day in the sun yesterday, it just felt so normal again. 8)

Fraser I also had a stent placed in my Azygos vein(40mmx10mm). I could feel it in the beginning but that has gone now as has my worries about the stent. Dr. Ludyga who operated on me was very re-assuring about the use of stents. He just smirked and told me that I will have no problems with my stent, when I raised my concerns after the surgery.

I believe Zamboni is reluctant to condone stents at the moment, in public, as it may damage his entire theory if there are any poroblems which occur through the use of stents.

He was more than happy when I told him, through email, and being in the hands of Dr.Ludyga/Simka he knew that I was well taken care of. Dr.Ludyga is the STENT MAN and has been developing them for a number of years.

The sun may be gone in Glasgow but I have had a further test, which is a good indication of how far I have recovered since my procedure in Poland!!! :D :D
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby Zeureka » Tue Apr 13, 2010 12:51 pm

Oh Badger, I'm so happy for you! 8) 8) 8)

And as regards the "angioplasty only PR", would agree that this is currently the best strategy in the media for Zamboni. He plays it safe in the world media to promote the benefit and low risk of the "traditional" CCSVI treating method (angioplasty as a win-win in risk-benefit analysis in terms of safety) and that can be clever. Better keep the door half open than risking it will be closed by misleading stent criticism.
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3 weeks since procedure -

Postby Badger » Fri Apr 16, 2010 1:42 am

I am still doing well. I had another day in the sun yesterday, when I got up to walk in to the house I did so all in one motion. Normally after sitting, never mind sitting in the sun, I am required to sit up and then stretch my legs before I could walk.

This is all so exciting, it is so nice because it is not until I have done something like this that I then realise what I just did.

It may only be small things but it is major progress in MS terms.

I am still waiting to run and get up and down stairs quicker but they do say good things will come to those who wait!!! :wink:
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby weegie1 » Fri Apr 16, 2010 1:46 am

Hi Badger,
This weather is just perfect.
Been following your progress with great interest.
Great how you are still finding improvements.
Keep the story going.
Let it be a reason but never an excuse
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xx

Postby Badger » Mon Apr 19, 2010 5:28 am

Hello,

Here is a link for you, raising the profile of CCSVI even further:

http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2983
<em>Badger
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Postby Vhoenecke » Mon Apr 19, 2010 11:47 am

Hi Badger,

Love your posts. Have you heard how Tim is doing post liberation? Would you mind updating us if you know?

Val
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Eyewitness account

Postby Trent » Tue Apr 20, 2010 7:10 am

Could we plese have some detailed feedback / blow by blow account of events from arriving to departing from Katowice, Poland, to help ease the minds of those yet to embark on this venture? I, for example, am wholly wheelchair dependant, so it really matters.
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Hello

Postby Badger » Wed Apr 21, 2010 3:04 am

4 WEEKS AGO

The time has flown by and I continue to notice improvements!!!

I was watching a TV programme last night and it had a feature on involuntary movements/spasms. It pointed out that it was due to excess iron in the blood - CCSVI. This program was nothing to do with MS.

I then realised that I no longer have these and I can sit in the one position for hours.
:D
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Re: Hello!!!!

Postby Badger » Wed Apr 21, 2010 4:50 am

Badger wrote:I have had to do a reflective account for a course that I am doing at college. I thought it would be rude not to share it with you. Here it is:

Badger and Tiger’s journey to be Liberated

After four months of anticipation I began my voyage to be Liberated. Along with my wife and fellow MS sufferer ‘Tiger’ Tim Stevens, who was accompanied by his wife and mother-in-law, we departed for Krakow, Poland where we were picked up and then taken to our hotel in Katowice.

Four months prior to departure I noticed a small article in the Evening Times newspaper which detailed revelations of Dr. Zamboni‘s new treatment. This was based on ‘Tiger’ Tim’s quest to have the procedure himself and to raise awareness for fellow sufferers, as he was a public figure I set out to contact him. I did so through his email at Clyde Radio station and was astounded when I received a reply. Following this I found I was on the telephone to either Tim or his wife, Caroline on a daily basis. This resulted in both of us being booked to go to Poland together, where we would receive what had been named ’The Liberation Treatment’. The big day would be on Wednesday 24th March 2010. This was something which was truly exciting for all of us and the months of anticipation were to become unbearable.

As we all greeted each other for the first time in person, despite all of the previous telephone calls, we shared our emotions; fear, hope, anticipation, but mainly excitement. We arrived in Krakow and after we collected our luggage we were greeted by our driver, Marek, who we would grow very fond of. He assisted us on our 40 minute journey to Katowice and lightened the mood with his relaxed conversation. As it was late at night we all wished each other goodnight before retiring to our rooms. Room service was quickly ordered to nurture our growing hunger pains before lights went out and a good night’s sleep was embarked on.

We were instructed by Marek to make our first day a day of rest. He had updated us on what our itinerary would be for the week ahead. On the 23rd we were required to go to the hospital to receive an MRV scan and the 24th was the day for our surgery. The 25th was a day to recover as well as an important eye examination and the 26th was our final day and for my wife and I, our flight back home to Scotland.

Bright and early on the Tuesday morning we were picked up by a driver called Madjeik, who took us to the hospital. On arrival we were told that there was a slight delay as someone had moved during their scan, meaning the entire 45 minute procedure would have to be repeated. From this, Tim and I were in no doubt that we must keep entirely still during our scan. Tim was first to go for the scan and in the meantime we kept ourselves entertained by chatting with our new driver Madjeik, who was thoroughly entertaining and helped to educate us on the history of Poland. It was then my turn for the scan. The nurse passed me a a set of ear plugs, which were to be worn during the scan to help block out, what I soon found out was a deafening thudding noise. I found it was like having two road diggers working at either side of my head. On the completion of my scan I felt like I had just spent that time being punched around a boxing ring. The results of the scan seemed inconclusive as there was not a doctor to explain the results. We were told that everything went well and that we were due to report back to a different hospital the next day, where we would undergo surgery. We were given two prints of our scan and told to keep one but to bring the other along with us tomorrow. I attempted to draw my own conclusion from the scan photos that we had been given but this was all soon to be disproved during my surgery the next day.
The day had arrived and we went down for breakfast, where we met fellow patients that had arrived for the surgery. We were all exchanging greetings and many people were wishing us good luck. It then began to hit home that what I had been waiting so desperately for, what seemed so long away, was about to happen.

As I began feeling emotional about the fourth coming events, we were quickly whisked of to our taxi and then to the hospital. Madjeik quickly lightened the mood and dispelled any worries that I had about the procedure. My wife and I travelled with another patient, Cece from Colorado, who I had been chatting to through an MS forum. Tim and Caroline arrived shortly afterwards with another patient, Mark from London. We were taken in to our room very quickly and told to get undressed and to put on our hospital gowns. The boys were all in a room together, with Cece in a room on her own. We all quickly became acquainted and disclosed stories about our own battles with MS. This helped to keep everyone relaxed and in a way helped us forget that we were about to go for surgery.

I was first to be taken and as I was wheeled through I received numerous good luck messages. As I lay awaiting for the doctor to arrive, I started to chat with one of the nurses, only to find she did not speak English. So I had only my own thoughts to keep me occupied. The doctor arrived shortly afterwards, he told me that he would carry out a further ultrasound of my neck and chest to check for the blockages. This was explained to me and the doctor revealed, to my surprise, that I did not have any blockages in my jugular veins. I did, however, have a blockage in my azygos vein. This was something that I was not expecting as this blockage is normally associated with people who have a progressive form of MS. As I have the relapsing-remitting form of the condition, it was expected that I would have a blockage in one of my jugular veins. This was soon forgotten as the doctor told me I was about to feel a slight pain in my groin which was the local anaesthetic he was about to give me. After what barely felt like a scratch I realised that I was now being operated on. The doctor was feeding a wire up towards the blockage in my chest, where he then inflated a balloon to widen the vein. This proved to be unsuccessful in an effort to keep the vein opened and a more permanent solution had to be used. A stent was then placed in the azygos vein instead. This was something I was unaware of until after the procedure when the doctor explained everything that had happened. I noticed that I could feel something moving inside me but found this to be nothing more than slightly discomforting. I then felt the heat from the newly flowing blood filling my hands and then eventually, my feet. After what seemed to be a relatively short space of time the doctor told me that he had finished. He brought his monitor closer to me and showed me the images from my operation. He explained that he attempted the balloon but found that the vein was simply closing over almost immediately, so he then decided to replace the balloon with a stent. He explained that this will ensure that the vein is kept open permanently, allowing the blood to flow. After my explanation I was wheeled through to my room where I was greeted with a cheer of anticipation as both Mark and Tim who were both very eager to find out how my surgery went.

As I lay in total disbelief, I could do nothing but congratulate the work that Dr Ludyga had carried out. This helped ease the worries of both Mark and Tim and before long Tim got called through for his own diagnosis and treatment. I began to explain the whole procedure to Mark and how he would have nothing to worry about. Another 45 minutes passed and then Tim returned, he too expressed his delight with his procedure. He had a similar experience to myself, apart from the fact he had a stent placed in his jugular vein. A complete reversal to what we had previously thought, something we would later joke about, with Tim saying the doctor must have mixed up both our MRV results.
It was not long before Mark joined us and then all of our relatives, who were also allowed back in to visit. Everyone was delighted to see us and the room was full of mixed emotions.

Tim, Mark and I had to spend the night in hospital, with all of the relatives having to return to the hotel. We all spent the night laughing and joking but Tim seemed convinced the doctor had mixed up our results. The next day we were up early to go to an opticians, where we would receive a very thorough eye examination. Before we left the hospital, the next batch of patients were already arriving and we all had nothing but good news to pass on to them. Once everyone had there eyes tested, we were quickly transported back to our hotel. The sun was shining and with our new found energy and enthusiasm, we decided to stand outside the hotel to discuss our experience.

I found that I could stand unaided for a longer period of time, my feet and hands were permanently warm and I walked with a steadier stride. Tim found his speech was much clearer and his head clearer. Mark also found that he could now stay in the sunshine, something he was previously unable to bare.

As my wife and I brought a close to our wonderful adventure in Poland; we worked our way around everyone at breakfast to wish them all the best of luck. We also reflected on how, in a short space of time, we had formed a special bond with so many people. I had been ‘Liberated’ along with many others. We have so many good memories of our time in Poland and the people we encountered along the way ensured that it would be a truly unforgettable trip.


I have this which details much of my procedure and there is more on my posting!!
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby Zeureka » Wed Apr 21, 2010 5:28 am

Very funny the mixing up of results story with Tim ! Who knows how long you were discussing that over night!!!

Seems from your improvements this was however in the end not the case :wink: And good you noticed immediately when left the hospital!
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Feedback - Badger wrote..

Postby Trent » Wed Apr 21, 2010 12:21 pm

Thank you very much Badger, that is an excellent summary.
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Postby BalsaBoy » Thu Apr 22, 2010 10:29 am

I liked the bit about the "fourth coming", Badger. Some people are still patiently waiting for the second coming! Hope your improvements continue and multiply.
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I saw my Neuro on Wednesday:

Postby Badger » Sat Apr 24, 2010 2:31 am

I have been back from Poland for 4 weeks now, afer being liberated. I had an appointment for blood samples to be taken on Wednesday, in my Neuros hospital. I never spoke with my neuro prior to going to Poland, I only called the hospital to tell the nurse that I will not be coming back for my treatment, which was Tysabri. My last infusion was on February 15th.

I was sitting in the waiting room, expecting the nurse to call me to take some blood and my neuro came out and called my name. I went in and told him I have been to Poland, he replied "I have heard". He appeared slightly annoyed and he then said " If you had spoken to me prior to going, I would have advised against it as it is only a theory and there is no evidence to support any of the claims" I stated that there has been trials and began to rhyme of all of the names of the Dr's involved in the trials. This left him speachless for a few seconds before he took me to have a look at me.

After doing this I sat down with him again and he never commented on how I was. Normally he will explain if he thinks I have improved or that I am worse, not this time.

I told him that I will stay off Tysabri and he stated that Tysabri will still be in my system. This is despite the fact he has told me previously that Tysabri will stay in your body for 6-8 weeks. He wants us to believe that we need the drugs!!

I know for a fact that I have improved and he knew this but could not admit it, shame on you!!!

He would have known that I went to Poland as the nurse would have told him but I have also been in the newspaper here in Glasgow, so it would have been rewarding to see him squirm when he read this.

:wink:
<em>Badger
RRMS 2004</em>
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Postby Vhoenecke » Sat Apr 24, 2010 4:54 am

Way to go Badger!
Shame on the neurologists, they were once (half a year ago) thought of as top specialists, now they sure are showing their true colours. Not at all concerned for the patient's well-being, only concerned for the bottom line or saving face. This theory slaps the neurologists in the face by having many people (including me) ask if they had actually really studied or learned about the disease MS. This theory proves to ust that the difference between God and a neurologist is that God doesn't think He is a neurologist.

Val
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