This Is MS Multiple Sclerosis Knowledge & Support Community

Hello,

I am back from Poland, I have been liberated and now on the way to recovery.

The whole experience was something special. You stay, in a really nice hotel, with all the oother MS patients who are there for the procedure. You are picked up from the airport and everything is done for you. The Dr's and Nurses in the hospital were all great, despie the fact most of them never spoke any English.

Now the procedure. I went for an MRV scan on the 23rd and was then picked up on the 24th to be taken to the hospital along with two other patients. I was first to be taken and the Dr does an ultrasound to check my veins. He noticed that my Jugular veins were fine and did not require ballooning. I did have a blocked AZYGOUS vein, which required to be unblocked. He tried with the balloon but it immediately closed over. He placed a stent here instead which means it is permanently open, with the blood flowing. The procedure was entirely painless with only a slight discomfort.

Instantly I had warm hands and feet. Once I left hospital I noticed I am steady on my feet, I can stand still with my eyes closed, my walking is also a lot steadier, my eye sight has improved slightly, my speech is much clearer and overall I am doing things with a much clearer head and in a calm steady way.

All of the patients that were there have had these veins and after the surgey notice varying degrees of improvement. The less you have had MS usually means the better the recovery.

Now I only have the symptoms of MS but I will hopefully have no further relapses and it will just take time for my body to recover. This has been the biggest week of my life and I hope all MS sufferers will be able to have the procedure, the sooner the better.

p.s.
I can't thank the people of the EUROMEDIC enough, the drivers, Marek and Madjiek, the Dr's, Ludyga and Simka as well as all the nurses.

WHAT A WEEK

Barry McArthur

Hi Barry,

Thats great the procedure was a duccess, im very happy for you!
And to see these improvements just makes this treatment even better/

I am due to have mine in May.

Only my lower body is affected by MS - Mobility - legs stregth/balance + stiffness (when first standing), and Bladder - urgency/frequency

So im guessing maybe i just have Azygous stenosis as it s just my lower body movement thats affected.


I was wondering what your MS symptoms are, as you only have Azygous stenosis.

Also how long did the procedure take?

Badger/Barry - I am very happy for you. Way to go!

One thing that I have no problem with is cold feet and hands. Weight loss, fatigue, brain fog, balance, are my problems. My son thinks grouchiness is another.

All the best healing to you.

adamt - I hope to see you in Katowice in May. (do you have a date yet?)

I too, may have azygous effects, but the MRV was weird in that area - mostly "snow", and I could not decipher it. My self-assessed EDSS is only 1.5-2 though - but I have had indications of azygous involvement. My fatigue and fog would rate about 7.5 on the EDSS scale, if one could use that scale for that. I think the reasons for my low EDSS are bloody-mindedness, supplements, life-long vegetarian diet, marijuana, and a positive frame of mind.

Your milagro may vary.

It takes 40 minutes, I only felt a slight pain when I got the local anaesthetic and slight discomfort when the stent was placed.

It was a suprise to me that it was the Azygous vein but I was weaker on my left side and my legs were weak and my feet like ice.

I am so happy and can assure you the Dr's will do the best for you and everyone they see. They are so concise, accurate and clinical in everything they do. They also have a good sense of humour and are always upbeat.

Hello Barry,
Great news, pity you had to go to Poland. Could you call the Scottish national newspapers and tell your story (I guess you have your pictures). It would be a start in embarassing our Neuros into letting pwMS have these investigations/therapy as private patients in the UK.
Best wishes,
MarkW

AdamT I had my thoughts in the same direction as you before examination(12th March). Same symptoms Lower body, Bladder, 52 years old, I had accepted the azygosproblem, (because reading here makes you more nervous about the azygos) I had a stenosis in left Jugular and a valve in azygos. A stent needed in the Jugular. And then doctors recommendation was, to wait with stent in azygos. Not so big problem and if the stent was needed, it was quite easily done. Ludzyga said if I´m not satisfied with improvement, we can do it later.
I am satified with improvement, so it might be enough for me.

Badger and also Lelo! Thanks so much for reporting on your improvements. That sounds like maarvellous news!!!

AdamT/Johnson lets see if we'll be in the same week of May! I also do not have my date yet, but guess will arrive next days/weeks...Next week an Italian friend of mine is going (not on TIMS) and I'm soo happy for him! He has been joking that 1 April is a funny date...but I think can only bring luck!

Badger, good to know that seems to be no problem with the nurses then, if one does not know English. And I'm sure one can communicate also with others easily in a mix of languages as the smiles are there!

Steffi

Great news Badger-- hope you continue to see improvements! Keep us posted!

Badger,
Yay! I'm so happy for you! Thanks for starting my day off on a positive note!
Speedy recovery and continued 'better' health!
a

Great to hear you're back Badger and that you have noticed improvements already.
Hope the improvements continue.
Gaunyersel

great to here Badger
hope the improvements keep coming

Good news, Badger. You're the first from the West of Scotland to be treated. You've even beat Tiger Tim off the mark! Let's hope the treatment does the trick. I'm waiting to get tested in Rutherglen later on this year and I'll take it from there.

I have noticed a further improvement in my eye sight this morning. I am also just as steady on my feet and I am pulling on my trousers without the need to lean on something.

I also don't need to hesitate when I am doing something. A friend pointed that out last night when I was opening a bottle of wine.

I will keep the updates coming!!!!!!!!!!!!!!!!

Badger wrote:I have noticed a further improvement in my eye sight this morning. ...

Hi Badger!
Great news, thanks for update!

I just would like to ask when your problems with your eye started.
I still do not see any improvements in my vision. It is not bad but anyway any improvement would help.
My problems started 9 years ago. Since 6 years ago it is really not good.
Maybe I am just too old
Erika

I had the first problem with my eye two years ago, it is my left eye, but it went away only to come back around 1 year ago.

It is only a slight problem and is only evident when viewing small writing from over 5yrds. My friend is an optician so she will keep me minitored. I had my eye test in Katowice with the recomendation to have a further test in 6 months.

I will keep you updated on what happens.