The Frustrated Voice

The Frustrated Voice
The location of the problem

Monday, 29 March 2010

Do I really want to Limbo through life?

Limbo is a word that has come into my vocabulary quite a few times in the last few days.  After the excitement of a trip to Poland with Ella and delivery of the petition in London, added to that the enormous amount of effort we have all put in since Christmas there has been the expected downturn in mood and energy in the ms-ccsvi-uk group I am part of. 
I was kind of expecting this flat  line period but it is still such a disappointment to see all that energy and enthusiasm slip away.  There is a real sense of loss that comes when something that has taken up your attention for a while comes to a natural conclusion. I do hope that a new cycle starts up after Easter, there is so much more to do.   
Limbo, of course is a dance where the bar is lowered after each attempt and the dancers wriggle their way below it unil they are eliminated by displacing the bar.  What I am hoping is that I will be able to lift the bar after a few days and allow more people to join in the effort to make  all things CCSVI happen in this country. 
I am going to have to write the April newsletter shortly and that might be an opportunity to encourage and enthuse people into a new effort.  I have plenty of material to write about so this month will be easy to write, but how to reach all the potential readers?  I know that G has created some kind of data storage facility but I'm not sure how it works.  Hope to sort that out before too long.
The news on Ella is tentative at the moment, these things take time, but the initial signs are good.

Sunday, 14 March 2010

Ella’s adventures in Katowice. part 1

This is the diary I kept of the first trip to Katowice, Poland.


Monday 15th February:

Waiting now to set off for Poland. Spent the day going through everything to make sure I had not forgotten anything. After all the waiting the time has finally arrived. I remember when I first told Ella about the prospect of Liberation. It was the day of her move into her new flat on the 19th November, I had heard from Dr Simka on the previous evening and he asked me to email again on the 10th December to be given a date. This I did and after a week or so of waiting for a reply I was given the 17th and 18th February. I was extremely lucky to find out about this just a few days before the Canadian TV documentary came out, because after that it was impossible to get a date for the Liberation procedure within 6 months and now the waiting list extends into years. I’m hoping that treatment will be available in this country before the Polish waiting list expires.

One worry that had been with me from the beginning was the matter of payent. It appeared that the
organisation in Katowice was a little haphazard. The doctors were the only people who spoke English
and they were busy, it was difficult to get any information at all. We had heard that we could pay by
card but some people had had difficulty with their bank in that regard, so the alternative was to take 
cash or to arrange a bank transfer (CHAPS).
The price at the time of booking was 4700 Euros for all the tests and up to 2 stents. Fortunately or
unfortunately as the time approached for us to travel they got themselves organised and appointed a
patient co-ordinator who spoke English but at the same time the cost of the procedure went up to
7,000 Euros which included the stay at a hotel and transport to other facilities used for the MRV.
What I had been trying to obtain was details of their bank account so that I could transfer the money
from the UK. I had asked for this information a couple of times but had not received a reply until
about two weeks before we were meant to get there. When I got the account details I organised
with my bank to have a CHAPS transfer done so that the money would reach them in a single day
rather than 4 or 5. You have to pay about £20 for this service but if time is short it is worth it.
The clinic will need details of your account including the IBAN and SWIFT/BIC reference
numbers in case you are due for a refund. You can also purchase the drugs that you might need
from them in local currency for about 200 zloty.

Tuesday 16th February 2010
Left Farnham early, early in the morning and travelled clockwise on the M25 in that awful not really rain type of rain that leaves your windscreen permanently obscured and in need of cleaning. Managed to get to Stansted in good time and without too many problems thanks to my GPS (who goes by the name of Gertie). Everyone at Stansted was very helpful and our journey was uneventful. We arrived at Katowice airport half an hour early, collected our hire car and went on our way to the hotel. If you think our roads are bad, you should come to Poland. I expect it is all that snow that wrecks the roads, so you have to be careful where you drive.

The hotel Zaleze is really nice, but it is located in a rather run down area of Katowice, where all the shop windows are protected by grills. The car is safely parked in a locked compound though so we felt confident it would come to no harm. I would have no hesitation in recommending it to people who do not need a wheelchair, as the staff is very helpful, the facilities are really good and the cost reasonable. There are however quite a few changes of level in the place as it appears to have been two buildings at one time which makes it more difficult to handle with a wheelchair.

We ate in the restaurant in the evening and the food was good, and at about £25 fed three, including drinks and coffee which we thought very reasonable.


I don’t think that people going to Poland for Liberation will have the same dilemmas as I did as they are now offering a complete package for visitors which includes Hotels and Transport, but if you do book your hotel yourself then before confirming your booking have a look at it through Google earth and look at the pictures of the surrounding area that visitors before you will have posted. It gives you a flavour of what to expect.

Wednesday 17th February
Drove 20 minutes or so to Zabrze hospital to have the MRV done. If you go there by taxi you will most probably be dropped off in front of a gate. Once inside the courtyard turn left and more or less in front of you and slightly to the left you will see the Radiology department. Go up the ramp or stairs through the double doors and along the corridor, making two left turns before being faced by a longer corridor. Half way down that corridor on the left is the Voxel facility where you need to register. A doctor there speaks English and will explain the forms that you will need to fill in and later give you instructions about the MRV itself. The whole process will take an hour or so. You will be given an image of relevant parts of your head, neck and chest and two CDs, one for you and one for Dr Simka. If you are driving allow extra time to find somewhere to park, especially in the winter as snow tends to be piled on the road side and takes up space usually available for parking. There might well be a hospital car park but I did not find it in spite of driving round the block.

Thursday 18th Feb

Ella had MRV on Wednesday and from my inexpert eye I could see on one of the pictures of a slice through her neck that there was one vein/artery not showing (4 on the left, 3 on the right) so I knew that there was something amiss, could not see where on the frontal pictures but in view of the eventual location that is not surprising as there is so much tissue/bone in that high up area.

On Thursday Dr Simka did the doppler and there was obviously some turbulence on the right hand side, but not much in the areas he was able to look at, from what he saw he thought that this turbulence might have something to do with the Azygos vein, although when he came back to check with Ella about her condition he seemed puzzled that she was not PPMS. In the event he was puzzled enough to go to the next stage which was to examine her under x-ray with opaque die flowing through her veins. This is where he found what he called a severe stenosis of the R Jug, right next to her ear/jaw. So professor Z conclusions about the correlation between the types of MS and the veins affected were vindicated once more. When I talked to Dr Simka later he remarked that Ella's case was a good example of why the results at Buffalo were not as good as the Zamboni results. They did not go on to treat the patients, or they might have found the problem in places that could not be seen with the doppler or the mrv.

I feel sorry for those patients who were sent away with a negative result.


Friday 19th February, Ella looks relaxed and unworried and everyone is having a good look at her bruises. They are quite spectacular, it may be because she has been given extra blood thinners… Tomorrow I have to find a chemist that sells the blood thinners she has to inject for the next few days. The local chemist did not have these, not surprising really as they must be quite specialised drugs. I know there are several chemists near the hospital and they are bound to have it there so will go look. Lunchtime we went hunting for a pizza hut, thank god for Gertie, Dan was a happy bunny and got the biggest pizza you have ever seen. It was so big that they dragged a stool over to stand it on… He could not finish it all, but he gave it a good go.


Ate in the restaurant again, the food is really nice and very reasonably priced and it is fun trying to understand the Polish menu with the help of the waitress that only speaks a bit of German… But everyone in the hotel is really nice and helpful.


Saturday 20th February, Ella decided that she wanted to go to Krakow. So after we have been to get the drugs we will drive the 50 km or so to the capital of the region. No problem at the chemist, they are obviously used to us English speaking people turning up to buy drugs, she nodded her head when she saw the prescription and disappeared into the back room, came back with the 7 syringes and rang them up on the till so I could see how much to hand over… That is one thing that I have found difficult to get the hand of, numbers I will have to study that a bit when I get home.


We drove to Krakow and the further we went the worse the weather got… by the time we got there it was snowing and foggy. Gertie Garmin (the GPS) was totally confused in the small streets so stopped parked up and decided to walk, but the weather was really unpleasant and when we had found out way to a park we decided to turn back as the fog was so dense we could not see the other end of it. Still we could say we had been to visit…

The doctors were saying that it would be 5 days before Ella would see any indication of improvement, and that will be the day after we get home…


Sunday 21st February. Sun shining, but still very cold, the tall chimney beside my window is smoking black smoke, I’m not sure what it is for and it is attached to a small building and only smokes for an hour at a time. Could it be a washroom? Very strange. Later today we are going to investigate the Imax to see what there is there.


The Imax is a great resource, probably the best thing about the area the hotel is in. Cinemas with lots of screens, restaurants, coffee bars, video arcade games, bowling, snooker and a crèche. We ate pizza again and watched Sherlock Holmes with Robert Downey Jr and Jude Law. Great film, we really enjoyed it and it brought a new dimension to the character.


When we got back to the hotel I asked how much it would be to make sure I had enough cash. The young woman got the bills out and added them up, it came to 3280 zlotys. Which was about 400 zlotys more than they quoted… But I was not going to argue… I have enough money here.


Monday 22nd February We have to leave our rooms at 11am and have decided to go back to the Imax to spend the day there as we don’t have to be at the airport until 18.00. When we got there Dan challenged me to a game of bowling and Ella accepted on my behalf. He won but I got a couple of strikes and given a bit more practice I could be competitive again. It has been a long time since I played.


We also went to the pictures again and watched Ghost writer, good acting but not good story… The book apparently is very good, but the film did not translate that. It lacked depth.


When we got out we drove to the airport via a sizeable detour to find a petrol station to fill the tank up, and lo and behold when we got to the airport there was a petrol station. All travel arrangements worked very well, Ella was in good form and when we arrived at Stansted Dan’s mum was there to pick them up.


I drove home and got in about 00.30 on Tuesday. Ella went to work that day… and for the next few days made some gradual improvements. Able to walk further than she had for some months, less fatigued and stronger in voice. Unfortunately some 10 days after getting home in the space of a couple days all her improvement faded away. And we are planning another trip to Poland exactly a month after the first one.






Liberation from CCSVI - intervention produced steroids

After Ella's liberation she experienced ten days of improvements similar to being on high dose steroids and it occured to me that the improvements she experienced may have been due to the steroids that the body produces naturally after a surgical intervention. I've done a bit of research and consulted a knowledgeable friend, and it turns out that the steroids produced are unlikely to make the kind of difference that high dose steroids do.  

Firstly the amounts produced are minuscule and secondly the intervention was minimally invasive with little surgical trauma. 

So the improvements were not due to steroids so the only conclusion I can come to is restenosis, and when I look back on my time with her in Poland I noticed that the only indicator I had of her CCSVI condition was the thread vein on her cheek.  It was quite obvious to me that after the procedure the vein was less angry and less prominent, but I noticed on the day before our return that her vein had taken on its previous prominent state.

The conclusion I draw from this is that the restenosis probably happened within 5 days of the liberation but that the positive effects of the short term more normal circulation did not manifest until after that period.  Hopefully we will get confirmation of this in the next ten days.

Saturday, 13 March 2010

Getting used to stepping out of myself

Such turmoil in my life, my daughter and her CCSVI and MS, the cause I am working for, the feeling of having to cope on my own with the planning of trips abroad, the difficult situation at home with mother in law and her dementia, and a husband that spends most of his time out of the house, leaving me to cope with the endless repetition of useless questions and the recurring anxiety attacks that the poor woman suffers.  And on top of all that the turmoil in my heart...

So every so often I step out of myself and look at me and my situation... and am surprised at this new person I have become, at what I have achieved both for myself and for others.  I am surprised at the energy I have displayed and at the resources I have found within myself. I am surprised at the things I have done, thought, felt and want all of this to continue.  This new person with the strong voice, the ability to make decisions, to change my mind, to let go of being right, to look at myself differently and let go of old restrictions and rules I have made for myself.  The few I was still hanging on to that is.  I want to keep this new person, I don't want to go back to the conciliatory person I used to be, I like the warrior me, even if at times I have to contain the aggression, so as not to frighten people off.  I like the easy courage I have found within myself that means I can face most tasks on my own and can ask for the things I need over and over again if necessary.

Would it not be good for this person to endure? I think it would.

Thursday, 11 March 2010

I'm a ccsvi whimp!

I'm a whimp... or maybe I'm tired or even just a tired whimp. Things don't seem quite so overwhelming in the mornings do they? After all it is not me who suffers from CCSVI and MS.
Sometimes I wish it was. It would be easier to cope with I think. Let my daughter have a full and productive life, let me who has had a full and interesting experience be confined to a wheelchair. Still enough winging, on with the next part of the adventure
I'm all set for Poland now, and if the last experience is anything to go by it will all go without a hitch. I've done my homework, I've paid my dues, I've organised, double checked, pinned down the last detail... The rest is in the lap of the Gods as they say.
I suppose the extra worry I am carrying just now, is the fact that Ella is worse now than she was before our first trip to Poland, why would that be? Were the improvements she saw down to natural steroids produced by the body after the surgical intervention? Has the vein restenosed? We will find out next week. There are still so many unanswered questions.

Another Day of Turmoil

Another day of turmoil, when will it end. I ask myself what I should do, do I carry on with this mad, demanding project I have got myself embroiled in, or do I call it a day and gently fade into the mist without a by your leave or a good-bye.
Sometimes it seems like the most sane thing to do, the kindest to myself and my family. I do feel as if I am trudging through treacle and the weight of my own expectations is slowly hammering me into the ground. I need to find a way out of this trap I have got myself into. Go back to rationality and objectivity, not madness and subjectivity.
Don't know, don't know, don't know... Let's see what next week brings.

Saturday, 6 March 2010

Life keeps throwing stuff at me

OK, so give me a break... I don't know how much more I can cope with. I know I am alive and this has got to be a step in the right direction. For a few years now I have been in a kind of limbo, brought on by family illness and emotional trauma. I would not say I was depressed, more apathetic and disinterested. Felt I needed to rest, and probably did, need to rest.
And now, since November my life has been turned upside down... I have found some information on a condition called CCSVI which has a direct effect (it appears) on MS, I have taken my daughter to Poland to have this condition treated (me the home loving, gardening sculptor have travelled to a country I did not speak the language of), I have been recruited to help manage a group of people to raise awareness of this condition in the UK, and ended up emotionally embroiled in the whole thing, invigorated, unsettled, turned inside out, knocked sideways, thrown into new areas I did not realise I knew anything about, and part of a great adventure I could not have even begun to imagine 6 months ago.
But how much can a person cope with? How much restructuring can I manage? How much of me will be left when this is over? Will I be able to stand up? Live, love, enjoy? Time will tell. I LOVE MY EXPERIENCE.