George til AMEDS 10/8/10

[HeleneE]

Hej, Jeg hedder Helene og er ny paa MSforum. Jeg boer i Dublin sammen med min Irske man George. George fik MS diagnosen in Maj 1998. Han er 38 aar. Sorry I am switching over to English - I am danish but have lived all my life outside of Denmark and my written Danish is really bad. I kan speak and read danish so please answer in Danish. 
I have been following for the last many week all of your stories and they have brought us a lot of hope!!
George has SPMS. He was on Betaferon since the begining but stopped about a year ago as it was doing nothing for him. George's main problems are balance, fatigue, hand and some head shaking, bladder. These are the main problems but to this you can add the ususal heat intolerance, cold legs, slow speech when he is tired etc.. George seems to have got worse very slowly over time with two main hospital visits for steriods in 2007 and July 2010. He is using a wheelchair now nearly all the time now.
Ok now CCSVI... we managed to get an apointment with Monica Healy in Dignostic Imaging in Dublin (0035312100232), for TODAY! She has been to Poland and has trained with DR Simka. She is a sonographer with 25 years experience and has now also learnt how to look for the CCSVI.
She was able to confirm that George has CCSVI  in the Jugular veins on both sides. His valves stay pretty much closed even when he is lying down (as I understood it, the valves in the veins should be closed when you are standing and open when you are lying down). She spent about 45 minutes examining, with the Doppler, the veins in lying position and then sitting position. It was quite easy to get an apt with her and the cost is 195Euro. We are going on Monday to Ameds in Warsaw for the procedure and I will let you know how George gets on.                      Glad hilsen fra Helene

[per west]

Meget spændende. Også at det faktisk kan lade sig gøre at finde lukkede vener med ultralyd, selv om det ikke er Zamboni som scanner. Held og lykke med jeres tur til Ameds.

[Leif]

Hej Helene......

Super dejligt at du har lyst til at dele jeres historie med vi andre som nogenlunde er i samme sitiuatioen....... Så mange tak for det og håber At høre positivt nyt når i er hjemme fra Polen...... :-) Hils George og ønsk Good Luck........ :-)

Hilsen Leif.....

[kenneth]

Hej Helene og George

Jeg er glad for at I har fået hurtige aftaler og må rose Jer for den 'hurtige udrykning' for det er ikke mange dage siden vi talte sammen i telefon :-)

I mandags var jeg til follow-up i Polen - og det var fint :-) Og jeg har det fint og mange af George's symptomer er væk eller blevet mindre efter CCSVI-Liberation.... så al mulig held og lykke til Jer.
Helene, du skal vide hvor meget det betyder for os MS's at have en god støtte - og du gør et fantastisk stykke arbejde for George :-)

De bedste hilsner

Kenneth

[HeleneE]

Tusind tak for det!. Kenneth you were next of my "to do" list. Wanted to thank you for taking my call. It made it very "real" to actually speak with someone who has had it done, and focused us. I then spent the last few weeks reading allllllll I could on CCSVI, to form our own opinion. So thank you!!

I think the person in Dublin who does the Doppler is good. I felt she did a careful check. We got a CD with the pictures that she took of the veins. They will be reported on by a consultant radiologist. He is willing to report on the physical findings that there is CCSVI but will not be able to link it with MS (but at least it is a step in the right direction). My plan was to find out if George had it while we were waiting for a place in Poland, to help us keep our spirit up. George has been very unwell lately and we needed that. I asked Monica Healy why some can see the CCSVI and some can't. She explained that you are normaly trained to find a blockage. The CCSVI is about looking at the mechanics of how the blood flows and how the veins look like. She said it is a completely different way of looking at it. She went to Poland because she was getting more and more inquiries about the CCSVI and she didnt have the protocols on how to look for it and how to do it.
 
I have to thank you Christian as well for posting the message Monday night about the cancellation in AMEDS. I wrote to them immediately that night and then the next morning as well and they rang me! It has been a race since to find money at soooo short notice. Thanks to loans  from bank family and freinds we should be ok - but I have still sweat on my forhead!! We will have to see how we get on. We feel that on the basis of all what we have read, that it is worth going...

It is super Kenneth that you had a good follow up!! I am soo pleased for you.

Glad hilsen fra helene
 

[Lisa.T]

Keep us posted, and good luck!!

[per west]

Jeg sender radiologens nummer til Søren Hancke, så han kan ringe til hende og få en beskrivelse fra Monica Healy in Dignostic Imaging in Dublin (0035312100232)

Betyder 00 +35312100232?

[HeleneE]

Ja  det er det 00 +353 1 2100232

Jeg kan ikke huske hvem Soren Hancke er?

Helene

[per west]

Det ved de gamle her, som engang var så naive at tro, at en dansk Radiolog kunne finde ud af det med forstoppede vener.

http://www.ultralydcenter.dk/1_laeger%20i%20ducas%20.htm

Han påstår selv han er den dygtigste i DK, og at han underviser andre kommende radiologer, men der findes ikke mange som egentlig forstår hvad det er de ser på skærmen... 

[cab]

Herligt med personer som Monica Healy som tager initiativ på foranledning af kunde ønsker - sådan nogle kunne vi godt bruge her i Danmark!
Håber virkelig at George kan få nogle forbedringer af proceduren - vil spændt vente på godt nyt...

[hag]

Hej Helene

Hvordan er det gået med George hos Ameds? Godt håber jeg 

christian

[HeleneE]

Saa kom vi hjem is sondags efter en tur i Ameds. George had 50% narrowing on the right side of his Jugular veins and a non-working valve on the right side causing reflux. His Azigos veins were fine. He had the procedure late Wednesday night and it took 1 hour 30 minutes. He got ballon on both sides/ no stents.
George was scored 8 on the EDSS prior to the procedure. He doesn't feel different after but his leg on outside touch are now warm/normal temperature (they have been ice cold for over 10 years) and I think he is not coughing as much when he eats - almost not anymore. He normally chokes very easily over his food. So they are the little positives  .
In the last few days after the flight back he has been exteemly unstable on his legs - so he is in bed. I am not sure if it is the travel or the aspirin or what!? The aspirin has caused him a lot of brusing on the lower part of his legs so I contacted the doctors to tell them about the brusing and the unsteadyness. They have recommended to take half the 75mg table of aspirin and contact them after 3 days to tell them how he is doing.
After the procedure when we went back to the hotel in Warsaw and we did nothing - didnt see the town or anything  - we rested as we were told to do, to give it as much chance as possible.
We were very very happy with AMEDS/ the hospital, the nurses and the doctors. Everything was so well organised! There is a lot of waiting specially on Day 2 (the day they do the procedure). They normally start the operations at about 4pm but if there is an acute cardiac patient, that person comes first. They started the first Amed patient at 7pm, George got his turn at 9pm and the last patient that day went down at 1030 and was finished at 12.00. It is a long day because you can't eat from lunchtime.
George said it hurted a bit when they went in but after it did not hurt - at the most it was slightly uncomfortable at times. He said that during the procedure the doctors were so professional and had the best equipment. You are not allowed to move your leg for 6 hours after. It is a very very small incision .We are very happy we went and we can only recommend it.
So now it is a "wait and see" game and we are of course hoping (!!) because his MS has been really difficult in the recent months..

 

Hilsen fra helene!

[Derhansi]

Hej HeleneE and George

congratultaions with the procedure. I hope we all soon will hear form you again, hopefully with great news. I for my part can say (my wife is EDSS 8 as well) That one of the first things we noticed was also her improved swallowing abillity(was a bit scary sometimes before the procedure)

Keep up the good spirit

Der Hansi

[Lisa.T]

Huge congratulations from me too.

But I am a bit confused? You say George is EDSS 8, which means wheelchair. You also say he is unstable on his legs??? Is he walking?

[HeleneE]

Hej Lisa,

George is wheelchair user but at home he normally can take a couple of steps between the bed and the bathroom with the help of grab rails or me. On a good day I would be just walking behind him and on a bad day he needs much more support. He was properly scored for the first time in Poland and the neurologist gave him an 8 the day before the procedure. The next day she gave him a 7.5 because his legs were less spastic and he was able to take 5 steps holding her hand (and me walking behind him.. ). But since the trip back he has definitly gone back to 8 from a mobility point of view. I think myself (without being 100% familiar with the EDSS scoring)  that he does fluctuate between 7 and 8.

hilsen helene