Whooohoo! I’m pleased to tell you all that I’m back from Poland, and I’m liberated!
Boy it’s cold this time of year out there, a mere -14 yesterday. Anyway, there’s a load to tell you so here goes:
I arrived last Tuesday 15th and headed straight over to the EuroMedic facility at Rolna Street No 18 for the doppler where I met Dr Simka for the first time. He scanned both sides of my neck whilst upright, and then whilst lying down. He said that both sides appeared to be severely concluded; in fact he described my jugulars as being ‘collapsed’. I was delighted that he’d found a problem and even more so when he confirmed that he had indeed managed to squeeze me in for a procedure on Thursday 17th.
Then it was back to the hotel. I’m pleased to report that it was a great base for the stay and there were no issues with stairs or anything else that can be an issue if you need to use a wheelchair. Personally, I tend to use a mobility scooter and I certainly didn’t have any problems using it. The hotel receptionists (whom all spoke good English) did a great job of organising taxis for me and making sure that they were big enough to accommodate my chariot. The hotel had a small shopping mall next to it which helped extend my dining options considerably.
On Wednesday it was a trip to Zabrze, 3 Maja street No 15 for the MRV. Beware that the main road between Kattowice and here is currently affected by some roadworks due to the construction of a new carriageway, so this can add an extra 45 minutes to the trip. It’s basically a small private facility here inside a much larger public hospital that is about 100 years old. There is a sort of gate you can use to gain access from the main road, but if you have the hospital on your left side (when on the road) you can take the next road on the left where there is a barrier on the Left after about 50 yards that will allow you to drive round the back (where a friendly taxi driver can get you really close to where you need to aim for). Finding the right department was a bit of a nightmare and I’d recommend taking the time to print out a small piece of paper translated to Polish that says something like ‘please show me the way to the department of magnetic resonance’. After presenting myself at the main desk I was asked to complete the usual MRI forms (have you got any metal inside your body, are you claustrophobic etc). Although the form was written in Polish, there was somebody on hand to translate. Surprisingly, they asked for payment up front here and it had to be in cash. Then it was into the MRI machine (earplugs are highly recommended since this was the loudest scanner I’ve ever been in). At the end of the procedure there was a chance to speak to the doctor about my results, which seemed to show that there was a definite blockage in my right Jugular. The pictures also showed a large amount of collateral blood flow pathways that looked like a handful of hanging spaghetti. Nice.
On Thursday (procedure day), I was told to go to Bartosza Glowackiego 10, for 07:00. The entrance to this facility was via a courtyard area towards the bottom of the road where there were parked cars and ambulances. Then you walk down the corridor and through some doors that have the ‘EuroMedic’ logo on them. Annoyingly, it wasn’t until about 08:30 that anyone turned up but since there were other people there for the procedure too there were other people to keep me company. In fact, I really enjoyed their company over the next day or so and I’m going to miss them! Then there were blood tests and more forms.
Then I was shown to my bed and I made myself comfortable for a few hours until the proposed surgery start time of 16:00.
I’d already been briefed to expect this next bit, but just in case you are also about to have a procedure done you should know two things. 1) You need to make sure that your err, ‘groin’ area is nicely shaved. They will offer to do it for you with a laughably hopeless disposable razor and no soap or you can take care of it yourself using whatever you may choose to use instead. 2) You may also be catheterized ready for the op. As you may already know, this is a potential cause of a UTI so I’d recommend you take lots of cranberry juice etc with you just in case.
And then after what seemed a lifetime, it was my turn to be wheeled in to the operating room. You get a sedative via the air that’s pumped just under your nostrils and this did an amazing job of taking all of my nerves away, as by 20:30 I’d become just a bit anxious. And then it’s a quick local anaesthetic and off we go....I have to say that I didn’t feel a thing and the whole thing was over in a flash.
The op itself was performed by Dr Ludyga and someone else that I never got to meet so he will remain nameless. They initially tried to investigate my left jugular via my groin but couldn’t quite get to it due to obstructions caused by my neck muscles etc. So they ended up investigating this area by going in through my neck. They concluded that there wasn’t really much of a problem on this side but it did highlight an unexpected issue. In order to go in via my neck on the LHS I had to turn my head so that it rested on my right ear and thereby expose my neck. But doing this actually caused my jugular to stretch and twist sufficiently to actually block blood flow. The consensus here was that my jugulars are actually too short! This is quite interesting because although I’ve read about blocked/narrowed veins and even people who are missing their jugulars, this is the first time I’ve heard of problems being caused because they are too short.
Further investigation confirmed the narrowing in my right jugular, which was duly fixed with a balloon.
So it now appears that my vein issues may have as much to do with my posture (especially the position I sleep in) as they do with having any blockages. So I’m now actively trying to sleep without having my head twisted in any way. Much harder than it sounds!
At this point I should tell you that when I spoke to Dr Simka on Tuesday he indicated that I would need to hang around for 3-4 days after the procedure and I mistakenly thought that this meant I’d be staying in this clinic/facility for the duration. Not so, as we all left the following day and it was back to the hotel.
I have been prescribed a daily anticoagulant injection called Fraxiparine for 7 days only. It would be longer if I’d have received a stent or two.
They have provided me with CD’s of the MRV and of the procedure itself so I’m looking forward to sharing this data with the doctors over here. This is hard evidence of vein problems that cannot be refuted.
So are there any benefits now that I have had a procedure done? I think I must be realistic here and say that since I’m SPMS with a high EDSS this may not actually do much for me. If all it does it stop me progressing then I’ll be thrilled. I’ve also been told that it may be quite some time before any perceivable benefits show themselves. Having said that, it’s now day 4 and already there is a massive difference in my skin colour – especially my face. I’m usually quite pale but everyone has commented about how well I look. Now I look like I’ve just spent a week in the sun! My legs aren’t as grey either. I have also noticed that my hands and feet are much warmer than usual too. Because my groin area had quite a lot of dried blood and remnants of iodine etc, I had a bath last night. Not just my usual tepid vaguely warm bath, but a hot steaming bath, with no ill effects whatsoever. Usually a hot bath would melt me to the inside of it and I’d be stuck there for an hour after the water had drained out before I could summon the strength to crawl out. But last night I hopped out just as easily as I got in.
As I say, it’s still early days but I am VERY VERY happy!!
Last edited by Mutley
on Mon Dec 21, 2009 11:29 am, edited 5 times in total.
Mutley goes to Poland
1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5