Hi Mark,
Thanks for the insight, not good news but a much needed reality check for me.
Hopefully one day things will start happening over here in the UK, after all thats what we pay our taxes for...
regards
xia
Take on the NHS...
Hi Mark
I think that you are right. I personally had no real hopes of getting anything done on the NHS, which is why I booked Poland last November. I had gone to see my doctor in early October, well before CCSVI was out in the public domain. I surprised myself that I got this far. It would be a completely different ball game if I was starting now.
I think that you are right. I personally had no real hopes of getting anything done on the NHS, which is why I booked Poland last November. I had gone to see my doctor in early October, well before CCSVI was out in the public domain. I surprised myself that I got this far. It would be a completely different ball game if I was starting now.
Nigel
NHS or going abroad
Good luck to those of you who are going to Poland you are indeed very lucky to be going to the most experienced centre for this treatment. There have been some wild allegations thrown at them in the past few weeks, implying incompetence and opportunism.
Please believe me (and tell me when you get back) that this is not the case. I have just returned from a second visit to Euromedics in Katowice with my daughter Ella and the service and care they probided is second to none. The reason we went twice is because they are being very careful about treating their patients. They usually perform a PTA (ballooning) as a first procedure to avoid putting a foreign body in the patient, but if these do not last, as is often the case, they will put a stent into the offending vein. The unit is not large but is very well equipped and clean. The staff is friendly and caring, the organisation is well managed and although you will have to wait for your operation, due to blood tests and form filling, you will be well enough to leave the next morning. Whilst you are there you are booked into a 4 star hotel and the price includes accommodation in the same room for your helper. Additionally you are transported between the airport, the hotel, the various testing centres etc by English speaking. friendly and caring drivers. It is a shame that the two drivers we met may not be there for much longer, one of them is actually doing a walk round Poland for the Polish MS charity, and the other is a builder by trade who hope to go back to what he does best, but I am sure that the people who replace them will be just as good and helpful. Marek (the walker who speaks 4 languages) the driver we had most to do with, was more than a driver, he translated in the clinic to help with form filling, he also went out of his way to take people to places they wanted to go, he would stop at the chemist for you to get your medication. The group of us who were there at the same time were so taken by our two drivers that we took them out for a meal to say thank you. And all enjoyed ourselves.
If you have not yet seen the two videos from False Creek then I suggest you watch them before you go...
Please believe me (and tell me when you get back) that this is not the case. I have just returned from a second visit to Euromedics in Katowice with my daughter Ella and the service and care they probided is second to none. The reason we went twice is because they are being very careful about treating their patients. They usually perform a PTA (ballooning) as a first procedure to avoid putting a foreign body in the patient, but if these do not last, as is often the case, they will put a stent into the offending vein. The unit is not large but is very well equipped and clean. The staff is friendly and caring, the organisation is well managed and although you will have to wait for your operation, due to blood tests and form filling, you will be well enough to leave the next morning. Whilst you are there you are booked into a 4 star hotel and the price includes accommodation in the same room for your helper. Additionally you are transported between the airport, the hotel, the various testing centres etc by English speaking. friendly and caring drivers. It is a shame that the two drivers we met may not be there for much longer, one of them is actually doing a walk round Poland for the Polish MS charity, and the other is a builder by trade who hope to go back to what he does best, but I am sure that the people who replace them will be just as good and helpful. Marek (the walker who speaks 4 languages) the driver we had most to do with, was more than a driver, he translated in the clinic to help with form filling, he also went out of his way to take people to places they wanted to go, he would stop at the chemist for you to get your medication. The group of us who were there at the same time were so taken by our two drivers that we took them out for a meal to say thank you. And all enjoyed ourselves.
If you have not yet seen the two videos from False Creek then I suggest you watch them before you go...
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
Hi all.
I am now due to fly out to Poland in a few days, can't believe how quickly its come round!
I have spoken to the vascular study radiologist I was referred to and she is very excited and interested in doing the necessary scans correctly. She has schooled herself up on the protocols and is eager to see me after I return from Poland in April. She will hopefully agree to review me periodically to check the status of the stenosis site. I am very pleased with this positive outcome. I think its important to keep pushing on and get some progress made here in the UK!
All the best to everybody out there
Lets keep banging on doors!
xia
I am now due to fly out to Poland in a few days, can't believe how quickly its come round!
I have spoken to the vascular study radiologist I was referred to and she is very excited and interested in doing the necessary scans correctly. She has schooled herself up on the protocols and is eager to see me after I return from Poland in April. She will hopefully agree to review me periodically to check the status of the stenosis site. I am very pleased with this positive outcome. I think its important to keep pushing on and get some progress made here in the UK!
All the best to everybody out there
Lets keep banging on doors!
xia
-
ClaireParry
- Family Elder
- Posts: 218
- Joined: Tue Oct 20, 2009 2:00 pm
- Location: Worcestershire, U.K
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Brightspot
- Family Elder
- Posts: 207
- Joined: Fri Jan 15, 2010 3:00 pm
- Location: Vancouver, Canada
information handouts
Hi Xia You mentioned that you had information handouts when you went to your doctor. I have been trying to devise simple handouts to provide to medical folks, and some to hand out to the public (for example people who go on the MS fund raising walks)
For the moment my focus is trying to find clear, concise and neutral sounding information that could also be shared with the press.
I wondered if you might share the info handouts that you used.
Perhaps we should start a thread for this, as there are lots of us trying to get the word out to anyone we can, in many countries.
For the moment my focus is trying to find clear, concise and neutral sounding information that could also be shared with the press.
I wondered if you might share the info handouts that you used.
Perhaps we should start a thread for this, as there are lots of us trying to get the word out to anyone we can, in many countries.
All the best Claire!ClaireParry wrote:See you there Xia. I'm flying out tomorrow.
See you soon...
Hi brightspot,
I will have to dig out the links I found the info from. My vascular surgeon didnt want simple handouts he wanted proper medical papers!
What I found seemed to do the trick. There are some papers here... http://www.ccsvi.co.uk/talking_to_doctor.php
I hope this helps, let me know if you start a thread on this and I will do my best to find more...
regards
xia
Post Poland...
Hi,
Got back from Poland on Sunday, what an experience!
They found my left internal was completely collapsed and ballooning was not effective so they fitted a stent and ballooned below it which increased flow but it was too close to the main artery so they had to move the vein to the side!
There was a kink in the right vein so they put a stent in that too!
I would never have thought it would be that bad!
Still getting used to the stents and having to rest and sleep loads. Too early to tell how things are going to turn out...
My GP was shocked at what I showed him and has been very supportive.
Off to see a vascular study radiologist on Tues, will again take all the info and see what she makes of it all...
They cant ignore us forever!
xia
Got back from Poland on Sunday, what an experience!
They found my left internal was completely collapsed and ballooning was not effective so they fitted a stent and ballooned below it which increased flow but it was too close to the main artery so they had to move the vein to the side!
There was a kink in the right vein so they put a stent in that too!
I would never have thought it would be that bad!
Still getting used to the stents and having to rest and sleep loads. Too early to tell how things are going to turn out...
My GP was shocked at what I showed him and has been very supportive.
Off to see a vascular study radiologist on Tues, will again take all the info and see what she makes of it all...
They cant ignore us forever!
xia
It has been a while since I last wrote about my progress with the NHS but there has been a development today.
I went for my Dopplar Ultrasound at the vascular study dept. It seemed like a waste of time as I have already had
the problem fixed in Poland... I went armed with all my results and CDs with the procedure, she was shocked that
I had already had it all done but wanted to scan me non the less to get some experience and I'm glad she did!
The good news is that the stents are all in place and looking settled and nothing wrong with the right vein she
said blood flow was good and in one direction (to the heart) in all positions. ( I had to lie flat, at 30 degrees, 60 and 90 degrees)
However the problem was my left vein lying flat, she saw reflux of almost 100%! She scanned at 30 and all was fine, 60 fine and 90 fine.
We tried a pillow and the reflux was greatly reduced so it looks like the problem is lying completely flat!
It also is above the left stent so the ballooning below the stent is still open.
She is going to try and accurately calculate the flow and meet with the vascular surgeon to discuss what to do next.
The up side is she plans to scan other MS patients and diagnose more people with CCSVI and get something moving here in the UK
I'm seeing the vascular surgeon in May, so we'll see what he says...
Thanks to anyone out there reading this
Take care
xia
I went for my Dopplar Ultrasound at the vascular study dept. It seemed like a waste of time as I have already had
the problem fixed in Poland... I went armed with all my results and CDs with the procedure, she was shocked that
I had already had it all done but wanted to scan me non the less to get some experience and I'm glad she did!
The good news is that the stents are all in place and looking settled and nothing wrong with the right vein she
said blood flow was good and in one direction (to the heart) in all positions. ( I had to lie flat, at 30 degrees, 60 and 90 degrees)
However the problem was my left vein lying flat, she saw reflux of almost 100%! She scanned at 30 and all was fine, 60 fine and 90 fine.
We tried a pillow and the reflux was greatly reduced so it looks like the problem is lying completely flat!
It also is above the left stent so the ballooning below the stent is still open.
She is going to try and accurately calculate the flow and meet with the vascular surgeon to discuss what to do next.
The up side is she plans to scan other MS patients and diagnose more people with CCSVI and get something moving here in the UK
I'm seeing the vascular surgeon in May, so we'll see what he says...
Thanks to anyone out there reading this
Take care
xia
I thought I would let you know that I had my first appoint with the vascular consultant today after Poland.
He was very pleased to see me and eager to know how I was and the details of Poland. He has not had
a chance to review my scans and op yet due to being stuck in Canada but he has informed me that a colleague
of his is heading a trial. ! He was invited to join them for dinner and discussions as
Dr P Zamboni was over to offer advice for the set up. This is brilliant news
He wants to review my case starting with a scan in July to check on the stents and blood flow. He has also made
recommendations concerning my medication as he doesnt want to risk inflammation and blockage in the stents.
However if that does happen then he is happy to go in and balloon them open and clear any blockage.
FINALLY!!
It hasnt been easy to get him to listen and now hopefully things will get easier for other suffers out there!
I'm glad I went for it and I dont look back
Take care and all the best
zxx
He was very pleased to see me and eager to know how I was and the details of Poland. He has not had
a chance to review my scans and op yet due to being stuck in Canada but he has informed me that a colleague
of his is heading a trial. ! He was invited to join them for dinner and discussions as
Dr P Zamboni was over to offer advice for the set up. This is brilliant news
He wants to review my case starting with a scan in July to check on the stents and blood flow. He has also made
recommendations concerning my medication as he doesnt want to risk inflammation and blockage in the stents.
However if that does happen then he is happy to go in and balloon them open and clear any blockage.
FINALLY!!
It hasnt been easy to get him to listen and now hopefully things will get easier for other suffers out there!
I'm glad I went for it and I dont look back
Take care and all the best
zxx