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

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

Postby ozarkcanoer » Fri Apr 02, 2010 10:09 am

Badger... I am so happy for you ! It keeps the hope going for the rest of us. Thank you.

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Postby Katie41 » Fri Apr 02, 2010 6:24 pm

It was amazing to see Badger and Tim when they returned from the hospital after their procedures! Badger was so happy to be able to look up at the sky. Pre-procedure he said he would have fallen over backwards due to his poor balance. He now also walked unaided without a limp. It's so exciting that he continues to see improvements.

The first evening post-procedure after returning to the hotel, Tim's wife was delighted to be at dinner without Tim. Why, you ask, would she be so happy about that? She said that she hadn't been able to leave him alone for years because he choked so frequently. Since the procedure, he hadn't been choking. I saw him prior to the procedure. His face sagged (sorry Tim), it was difficult to understand him, his eyes were glassy, and he seemed to have great difficulty following the conversation. Post-procedure, his face was toned, his eyes were alert and sparkling, his speech was clear (except for that great Scottish brogue. LOL), and he easily followed and engaged in multiple conversations. Yea Tim!

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Postby fraser » Fri Apr 02, 2010 7:16 pm

What a wonderful posting about Tiger Tim & Badger. So, so exciting especially having seen them just before the procedure in Poland (as we were leaving). I was also so elated to read that Dr. Ludgya said it can take up to six months to see the results/benefits of the procedure. So many exciting changes up ahead for those that often don't feel a huge difference immediately after the procedure (and hoping the changes that are felt after are only the first of many great things to come!)

Feeling so joyful for you all!
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......................

Postby Badger » Sat Apr 03, 2010 12:47 am

Thankyou so much for your kind words.xxx

It is so exciting to look to the future with hope and excitement, there is so much that this procedure offers, not just to me but for all MS sufferers throughout the world.

I am slowly easing myself back into life but as almost everyone who meets me says; there is a definite change even in your face. I believe that I am now feeling reinvigorated with a burning desire to ensure I live my life to the full now!!!

Don't worry, my darkest days with MS have taught me to be patient and I am prepared to allow my recovery process to take it's course. No matter how long that is.

Good luck to everyone. 8) 8) 8) 8) 8)
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Hello!!!!

Postby Badger » Sat Apr 03, 2010 4:04 am

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.
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby eric593 » Sat Apr 03, 2010 4:56 am

Glad to hear everything went well.

Do you know what the point of the eye exams is?

Why were you under the impression progressive MS problems resulted from azygous blockages? Is this just from anecdotal reports?

Wishing you much continued healing (and stabilization) for the future!
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Postby annad » Sat Apr 03, 2010 7:01 am

Badger,
A+
:)
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xx

Postby Badger » Sat Apr 03, 2010 7:19 am

I believe it is a way for them to keep a record of the progress of patients after the surgery, they did ask if we could go to an optician again in 6 months and then to send the report back to them.

I believe that I have just read somewhere that RRMS was assosciated with blocked jugular veins and PPMS or SPMS being assosciated with the azygos vein.

I am no MD though, so it may have just been a thought.
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RRMS 2004</em>
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Postby fraser » Sat Apr 03, 2010 8:15 am

Hi Badger,

Just to let you know, my husband was diagnosed with PPMS and they only found a blockage in his left jugular vein. Azygos vein was fine.

Reading your report of the procedure, was like reliving our experience!!

Overjoyed for all of you.

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Postby Villagemaid » Sat Apr 03, 2010 8:54 am

Amazing Badger........simply incredible!!!

So happy for you!!!

I'm scheduled for sometime in 2011. I can't wait.....lol.....

Continued success in your recovery!!!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Re: xx

Postby eric593 » Sat Apr 03, 2010 9:04 am

Badger wrote:I believe it is a way for them to keep a record of the progress of patients after the surgery, they did ask if we could go to an optician again in 6 months and then to send the report back to them.



I don't understand how examination of the eye records progress after surgery. What am I missing here? What does the eye have to do with it?
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Postby LR1234 » Sat Apr 03, 2010 9:16 am

They do a peripheral visual test and look at the back of the eye at the optic nerves and optic discs for damage/degeneration which is often affected in MS patients.
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Postby fraser » Sat Apr 03, 2010 9:21 am

When they did my husband's eye test in Poland they detected a slight glaucoma issue. His eye doctor here in Canada, was aware of this and has been monitoring it for a few years. He hadn't been diagnosed with MS at the time, so didn't know there was a link.

I talked with the doctor in Poland about this, and he said they like to redo the eye test because often these problems are resolved (after the CCSVI procedure). He couldn't tell me this would be the case with my husband, but it often does improve once the blockages are treated (only time will tell).

Maybe someone knows more about this than me??

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Postby LR1234 » Sat Apr 03, 2010 9:27 am

They also found a glaucoma risk in my eyes. How many red and yellow squares were there on your husbands tests? How old is he?

I had 2 red and a couple yellow (in same area) one eye and 3 yellow on the other.
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Postby eric593 » Sat Apr 03, 2010 9:52 am

Ok, thanks. I would think that a standard neurological exam would be more telling of any improvements, given that they test all limbs and a variety of sensory and pyramidal functions, clonus, proprioception, etc etc.

And why would they only be checking the eyes AFTER the procedure then and not before and after? That would be needed to assess any effect of the procedure on vision to have a before baseline.
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