Back from Poland

Algis · Post by **Algis** » Tue Dec 01, 2009 4:49 am

Great news

Glad you are well!

LR1234 · Post by **LR1234** » Tue Dec 01, 2009 5:02 am

I am doing the same thing Sesj, MRV 10th and operation the 15th!

whyRwehere · Post by **whyRwehere** » Tue Dec 01, 2009 5:42 am

Wonky, you are so lucky that you had congenital problems to fix, that were fixable. I will keep an eye on how you heal now, so don't forget to keep updating! What did the do with the upside down valve exactly?

ErikaSlovakia · Post by **ErikaSlovakia** » Tue Dec 01, 2009 5:49 am

Congrats Wonky!!!

Erika

acol · Post by **acol** » Tue Dec 01, 2009 7:08 am

Wonky1

Many congratulations! Absolutely delighted that things went well for you in Poland. Your reassuring comments will help a lot of people.

Did you have the doppler test first and/or MRV?

Regards

Sesj · Post by **Sesj** » Tue Dec 01, 2009 7:12 am

LR1234 wrote:I am doing the same thing Sesj, MRV 10th and operation the 15th!

In what hotel are you going to stay?

wonky1 · Post by **wonky1** » Tue Dec 01, 2009 7:45 am

Hi all, I just thought you would like to know of improvements so far.

1. My bladder no longer goes into spasm.
2. Myclonic jerks in the evening and at night have stopped, 2 nights ago.
3. My mind is clearer and sharper.
4. I no longer choke on food or fluid, even if I rush.
5. My voice is strong and clear.
6. Today I had my first hot shower in 13 years. Steam would normally paralyse me but there were no problems.
7. I am less fatigued.

I can only conclude that it works

MaggieMae · Post by **MaggieMae** » Tue Dec 01, 2009 9:03 am

Absolutely wonderful!!!

BudgieM · Post by **BudgieM** » Tue Dec 01, 2009 10:36 am

Mozel Tov!
For the first time in my 8 years of having MS do actually have hope!
Thank you so much for posting this!
I hope this becomes available in the USA soon!

wonky1 · Post by **wonky1** » Tue Dec 01, 2009 10:53 am

Hi Acol
I had the doppler as soon as I arrived, Dr Simka found a problem and I was delighted.
The MRI confirmed it the next day, then later on the MRV was done as part of the procedure.

Hi Whyrwehere,
I'm not entirely sure what was done with the valve, I think it may have been opened with the MRV probe then stretched open with the balloon. I barely slept whilst there so wasn't very attentive when it was explained.

Hi Sesj
yeh injecting clexane is tricky as I still have intention tremor, my GP has asked the district nurse to visit each day so that's good, the NHS are supplying the drugs as per Dr Ludygas prescription. She will also do an INR check to make sure I'm not overdoing it.

.

ErikaSlovakia · Post by **ErikaSlovakia** » Tue Dec 01, 2009 10:59 am

wonky1 wrote:Hi Acol
I had the doppler as soon as I arrived, Dr Simka found a problem and I was delighted.
The MRI confirmed it the next day, then later on the MRV was done as part of the procedure.

Hi Whyrwehere,
I'm not entirely sure what was done with the valve, I think it may have been opened with the MRV probe then stretched open with the balloon. I barely slept whilst there so wasn't very attentive when it was explained.

Hi Sesj
yeh injecting clexane is tricky as I still have intention tremor, my GP has asked the district nurse to visit each day so that's good, the NHS are supplying the drugs as per Dr Ludygas prescription. She will also do an INR check to make sure I'm not overdoing it.

.

Hi Wonky,
are you sure it was MRV (Magnetic Resonance Venography) during the procedure?
MR machine is very big.
The first part of procedure in my case was phlebography - they inject the dye into the veins via the groin - they and even I could see it on the screen - RTG - many people saw my procedure. I am sure there was no MR during my procedure. They made MRV in the morning in another hospital.
But may be there are some changes.
Let us know.
Erika

ErikaSlovakia · Post by **ErikaSlovakia** » Tue Dec 01, 2009 11:08 am

More people ask me in PMs how to inject Clexane.
As we also talk abou it here, read this: http://www.thisisms.com/ftopict-8682-clexane.html
I still use the slow technipue. It is not painful and the most imortant thing I do not create any bruises like that at all.
I still have some bruises from the first 4 days when I used the fast technique.
The nurse did it only once - I had a bruise anyway.
I inject it by myself since the day 1.
Erika

Maybe you find better solution for yourself.
Have fun

wonky1 · Post by **wonky1** » Tue Dec 01, 2009 11:13 am

Hi Erica, yes it was done differently to yours. I watched your procedure on you tube and expected the same.
They couldn't have taken video of me as the MRV machine was right over my face the whole time.
Maybe my valve problem necessitated a different approach.
I should ask Dr Simka and this time LISTEN! to what he tells me.

LR1234 · Post by **LR1234** » Tue Dec 01, 2009 11:35 am

How long do you have to be on Clexane for after the procedure?

ErikaSlovakia · Post by **ErikaSlovakia** » Tue Dec 01, 2009 11:55 am

LR1234 wrote:How long do you have to be on Clexane for after the procedure?

I have to inject it for 60 days after the procedure. 40 mg every morning.
In my case I still have 32 injections. Bruises from my belly are going away as I do not create new one.
Erika