Brit going to Poland

[alanbrowne]

It was Father’s day yesterday and my family was kind enough to come around and spend some time at our BBQ. It was fabulous, even though like Alan Browne's post, and many others, it breaks my heart not to be able to interact with my grandchildren.

I’ve been having second thoughts lately about the operation and wondering whether it’s too late for me, and that it will have no effect, and so is it all worth the pain, the effort, and the cost of going to Poland. But seeing my wife skip around the garden this morning clearing up after yesterday, and me not being able to join in and help her, just makes me more determined to see the trip through to reduce the impact of this horrible disease even by a little. If it makes the smallest positive impact then it will have been worth it. So it’s gung ho for Poland!

Hi Martin,
Glad you have decided to go ahead, you will be in good hands with Dr K, I'm actually going back in August to see him for my 3 month follow up.
The difference it has made to me has been nothing short of amazing.

No, I can't run around the garden with my boys, but at least I now have the energy to be able to play with them for long periods and they have also noticed the difference too.
It has given me a new lease of life, hope for the future and a new and energised Dad for my boys.

Good luck,
Alan

[Drury]

alanbrowne,

Great to hear that you doing well and feeling good and wishing you continued improvements.

Best regards,
Drury

[MartinHalford]

Well, I got through the traumatic journey to Poland. I took a flight out of Stansted with RyanAir (cost was a big factor for me!), and to their credit the wheelchair assistance was very good. I didn't feel too 'parked' for most of the time, and they were there at both ends of the journey to assist. They even carried my bags for check in and carry-on in and out of the plane. I was very impressed. Mind you, the onboard sandwich plus drink cost almost as much as the air fare. MRI due today ...

[Naija]

This is so exciting! i will be there from 28th June - also staying at Qubus!!!

[MartinHalford]

My agenda has been jumbled up a bit - started off with neuro exam today. Refreshing examination and analysis of my MS history. Quite unlike my annual check-up with my UK Neuro under the 'risk sharing scheme' where the only thing the neuro is interested in is the injection site rashes from Copaxone (which thankfully I don't suffer from) and how many relapses I've had in the last 12 months.

Internet here is very slow, so live streaming of video is difficult. I'm using Black VPN to log in to a UK Server directly so that I can today watch Qualifying for the European Grand Prix (and hopefully tomorrow England beating Germany in the World Cup) but the speed isn't really up to it and the video frequently drops out. No prooblems with email or anything like that though.

[MartinHalford]

I forgot to add to yesterday's post that I (almost) hit one brick wall during my Neuro exam, when I failed to show my medical notes. My UK Neuro has never offerred me any medical notes, and despite many requests, has never performed an MRI to confirm MS. Now I'm not saying that I haven't got MS, of course, but the Neuro here asked how did I know I haven't got something else such as Lymes Disease. My own notes that charted the progress of my condition since initial diagnosis in 1983 helped, but it was not, naturally, definitive. Anyway, he did end up agreeing that I really did have MS and not something else, but for a few awful minutes I thought I would be sent packing as an inadequate candidate for liberation.

Lesson - get whatever PROOF you have for MS and bring it with you.

[MartinHalford]

Great news!

I had both my MRI and my Doppler scan, and met Dr Kosteki today. What a nice man he is. Indication is that right jugular is clear, but vein on left side is restricting flow. Which is odd because the right-side vein affects the left side of the body (my weak side) and the left-side vein affects the right side of the body. So one would expect the opposite. Notwithstnding that, Dr Kosteki believes I am a good candidate for the procedure (one of only two patients given the thumbs up today), scheduled for Thursday. Medication prescribed in advance of the procedure is already in my hands and I'm taking it now.

Dr Kosteki would like to do all three treatments - start off with a venagraph, which involves injecting a dye into my blood so that is confirms where the restrictions are, a balloon angioplasty to blow those veins up, and then use the doppler in real time to see if that is effective, and if not go on to the third item and fit a stent to the most restricted vein. I've told him to prepare the forms and I'll sign up for the full Monty.

[Drury]

Good luck Martin!!!!

Hope you have really positive results and feel completely LIBERATED!

All the best
Drury

[SandyK]

Nothing but good thoughts coming your way!

[MartinHalford]

Its the last day before the procedure (I'm not referring to it as liberation out of respect to the Jews who were truly liberated around here at the end of WW2). Started off with the Lymes disease blood test (optional, and extra cost of approx $150, but when in Rome, and all that). This one's the test with the higher success rate using the 'Western Blot' method'

Packing list for tomorrow (not yet received any official list but this is what I've gleaned from those that have gone through the procedure) in order of importance:

1. MRI CD to give to the doctors (NB you can copy this to your laptop and it includes an executable that enables you to view the gory of your own 'slices').
2. Your own medication (for me Copaxone, Destrustol, Baclofen).
3. Admission consent froms duly filled out and signed.
4. Fresh change of clothes for the morning after.
5. Pyjamas/ night-gown for vanity.
6. Toiletries (Soap, toothpaste/brush, etc) and hand-towel.
7. Tissue/toilet paper (none is provided when using bed-pans).
8. iPod if you have one or a book to while away the sleepless/waiting times (there are lots of both).

There were on this list bottled water and granola bar, but we were given breakfast (pretty yukkie, but edible).

[MartinHalford]

Had a chat with Sue from Cornwall, Ontario, and she has convinced me that my EDSS (which is self-assessed) should be 6.0, so there you go - I'm up half a point. Signature will shortly be changed!

[Whitey]

Hey Martin! Hope everything went great for your and everybody else's procedures! I really hope that you're doing well and you see many positive results!

It was so nice meeting you, please keep us updated on your and others status tomorrow or whenever you have the energy. I miss you all!

- Dave White

[MartinHalford]

Hi Dave. Hope you and Jeff had a good trip back.

With all the cancellations here due to all the cardiac submissions (hot weather and all) the five scheduled procedures were dropped to two - myself and Patrice. So paradoxically, a Brit and an American were the only two on Canada Day! I felt undeniably priveleged, as they shipped us to a new hospital in Chrzanow, named, unparadoxically, the 'American Heart of Poland' clinic.

The procedure went really well. It was a long one - I was on the table for about 90 minutes - and they did an angioplasty in both my left and my right-side veins. Stents not necessary. Being awake for it and talking to them was kinda strange. I don't feel any different right now (just exhausted!) but the welcoming party back at the hotel all said how well I looked, and said they could see the difference. Time will tell!

[dodgeviper]

The procedure went really well. It was a long one - I was on the table for about 90 minutes - and they did an angioplasty in both my left and my right-side veins. Stents not necessary.

Congratulations on being tested and treated, Martin.

As an American I noticed neither the US nor the Brit soccer teams were up to snuff lately; so, now that you are treated, perhaps we will see you on the field.

Please keep us updated about improvements or lack thereof.

Best . . . .

[MartinHalford]

It’s 2am, a little more than 24 hours since the procedure completed, and I’m sorry to report that I’m not one of the miracle cures. One never hoped for anything more than arrested development of the disease, of course, but you know how hope springs eternal. So I’m looking for small improvements.

In the Hotel Arena there are three steps either side of the reception area that you encounter going from your room to the restaurant (oh, all right then, to the bar). I still need to navigate those very gingerly, and so I see no improvement there. My walking balance and gait seem just as clumsy, ungainly, and prone to falling. Status quo there too.

Although I’m conscious that I’ve got to take things slowly, I also realize that you don’t get something for nothing in this, or any other life, so I think I’ll start off with some gentle exercise to try and see if I can restore some muscle tone. Bingo – I found I could do ten bridges, whereas before I could only do three or four before cramping up in the back of my thighs. So that’s where my future lies – CCSVI will empower me to do the physiotherapy to make myself stronger.

I had envisioned being able to walk through the airport customs hall to meet and greet my family on return to the UK on Sunday, but I’m afraid I’ll have to rely on the wheelchair assistance service again. It won't be quite the homecoming that I had hoped for, but it will signal the start of another kind of journey...