sunlounger 2nd procedure in Poland

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Help with the list

Postby fiddler » Wed May 12, 2010 10:06 am

I have a preliminary list of phrases that patients would use to communicate with Euromedic nurses. I will send it to Iwona (if she's still around), but anyone who would like to see and/or add to the list should let me know by e-mail (click on my e-mail link below).

By the way, if someone has Iwona's e-mail address, in case she is not on TiMS frequently, please let me know.

Also, if there are any nurses in the audience, especially those who have been liberated or have had a friend liberated, could you please send me a list that the Euromedic nurses could use to explain things or give instructions to patients, please send them to me, as well.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby sunlounger » Fri May 21, 2010 3:56 am

Hi all,

Well it's been 2 weeks today since my last treatment in Poland and I was hoping to be able to say that I have felt some improvements,
But this unfortunately hasn't happened for me, so I am just taking everyday as it comes and hope to update my tracking again soon if I notice any changes good or bad,

I have put my lastest procedure on utube,

http://www.youtube.com/watch?v=OOhoumPfzPk

It looks to have been pretty successful but the flow in my left jugular after ballooning and stents is still slow but I was told this could improve in time ??
I will return to Poland in Nov for a check up and hope the right jugular which looks really good now after being just ballooned has not restenosis and the left jugulars flow has improved,

Best wishes

sunlounger :D
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Postby costumenastional » Fri May 21, 2010 4:24 am

sunlounger
Nice video man. Nice job altogether.
One thing i dont get though: how come after stenting and ballooning the flow is still slow? did they tell you anything about that xcept that it may improve in time(?)

it is obvious that the flow in both jugulars was far from perfect and at least one collateral can be seen before ballooning the right jug. after intervention it vanishes.

do you know what percentage of stenoses were found?
did you have an MRV at some point?

i think you are on the right track there...keep us in the loop.
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Postby mila77 » Fri May 21, 2010 5:39 am

sunlounger wrote:Hi all,

It looks to have been pretty successful but the flow in my left jugular after ballooning and stents is still slow but I was told this could improve in time ??

sunlounger :D


Sunlounger,

My video looks almost the same. After balooning and placing stent in my right jugular vein I can still see on the video: slow flow and some blood going back and draining via collateral veins (meaning reflux?). I was told the same, that it will improve in time but I am actually a bit worse after the treatment than before.
Before I had zero symptoms and I left the operating room with slightly numb right hand which still, after 3.5 weeks, stays slightly numb. It is not disturbing me too much so I will wait till my checkup, which is scheduled in July. I am really courious, what they are gonna see / say to me.

Mila
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Postby costumenastional » Fri May 21, 2010 5:43 am

mila, there are some very mild new symptoms for me too post op. nothing alarming, just some tickling in places there wasnt any before the operation.
i see this as a confirmation that blood flow has SOMETHING to do with some MS symptoms. wishful thinking? i dont think so. they started exactly a week post op.
good luck to all of us.
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Postby Mutley » Fri May 21, 2010 6:56 am

Hi Sunlounger,

Is it possible that your IJV's are being flattened by your neck muscles? Did you have an MRV - this may show such things.

Best wishes!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby sunlounger » Fri May 21, 2010 6:57 am

Hi costumenastional and mila,

Yes I had a MRV in Jan which showed a clear stenosis on my left jugular,

I,m sorry to hear both of you have mild new symptoms post op maybe it could be a good thing but more of a worry if you had zero symptoms before.

I thought Dr Sclafani had said something about why the flow sometimes does not improve after treating the stenosis but can't find that statement yet will keep looking,

Like you mila the surgeon who treated me Dr Kazibudzki just said after the stents and ballooning where placed that the flow was still not good but veins where different than arteries and the flow would improve in time,

Not sure what he means but would be grateful to hear if anyone knows more about this or can point me in the right direction if it's been discussed here already ?

cheers :D
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Postby sunlounger » Fri May 21, 2010 7:02 am

Mutley wrote:Hi Sunlounger,

Is it possible that your IJV's are being flattened by your neck muscles? Did you have an MRV - this may show such things.

Best wishes!


Hi Mutley,

Yes I had a MRV but can't see any evidence that my IJV's are being flattened by neck musles,

But will check through the images maybe i've missed something,

Thanks
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Postby vivavie » Fri May 21, 2010 10:55 am

I am glad I found this tread today because I am having a very bad day... I probably had too much expectations going in...

I was liberated almost 4 weeks ago and instead of getting better I am slowly degrading... I also have new symptoms, some started the day after the procedure; numbness in my left arm (stent in left jug) but the worst is my Jello brain;( I am not dizzy. It is more like if my brain moves and hits my skull) Very strange feeling. I have to stay in bed for days.

At first I thought it was the bloodthinners because it cleared up 3 days after I finnished the Clexane injections but now it came back and it's been FOUR days!!!

I never had more energy and the pain is the same.
Two improvements: very regular bowels and more saliva.
I am seeing my neuro next Friday, hahaha (he called me before I left for Poland to warn me) that is going to be very interesting...

I try to keep low profile on this forum because I still think CCSVI is part of the answer and I am sure it can't be placebo effect for everybody:)
Since they could not get into my azigos I still have hope but I AM getting worse.

Thank you guys for sharing.
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Postby Miia » Fri May 21, 2010 11:47 am

Hi all,

Sunlounger, was nice to meet you in Katowice, even though very breefly.

I've got a huge stress right now and I hope someone could help me. I had ballooning to right IJV 12th May. After that I felt totally different, brain fog and both cognitive and physical fatigues were allmost gone. My right leg was worse pre op, but it has gone through a remarcable progress. I felt the same way till yesterday, 20th May.

On sunday 16th May I got a flu and fever, yesterday I started to feel dizzy and weak. My both legs and hands started to feel numb. I needed a cane for the first time in 6 months. I also had a bit headache. I went to see a doctor and he diagnosed sinusitis. I'm on antibiotics now.

The feeling of weakness was nothing like my previous fatique, because I felt weak even after resting.

The doctors best guess was that both the operation and the sinusitis caused a huge physical stress for my body and those together might have caused me this sort of a relapse.

I'm a bit better today, but still feel weak and dizzy.

What I'm wondering is, how should I feel if I had restenosis and should I have the same symptoms back? Should the relapse after restenosis be so fast after all? I felt ok, exept the flu, and I walked very well on Wednesday evening.

I'm so stressed right now that I think at least half of the dizzyness is psychosomatic.
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Postby whyRwehere » Fri May 21, 2010 12:07 pm

My husband is always feeling weak and walking badly when he is ill...and some antibiotics make him feel worse as well. I think you should be patient and see how you feel after the illness passes.
One point about the nurses speaking English in Poland: surely they could hire a translator until the nurse learn some English....they could be there if needed??
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Postby Zeureka » Fri May 21, 2010 4:20 pm

Katie41 wrote:Ted,

Great idea! I sent the following to Euromedic as suggestions, but, much better to get it translated and sent to them:
Written instructions in several different languages that can be handed to patients upon arrival in Katowice and in the hospital.

1. Keep leg straight, don't bend at groin, for six hours after procedure
2. No getting up for 6 hours after procedure
3. Take off all jewelry
4. No food or drink 6 hours prior to procedure
5. No food or drink 3 hours after procedure
6. Procedures usually carried out in afternoon to late afternoon, early evening

Card with appt dates and times and pickup dates and times.
How long should traveling companions expect to stay at clinic
How traveling companions get home from clinic
Is it OK to turn head? (never did find that out)

Everyone will have their own ideas. These were the things we thought would be helpful.
Katie41
Oh thanks! I did not know all that but certainly reminds me still need to print and read the instructions that Marta sent with the confirmation also...and she sent also a sheet for MRV...and still need to prepare my doppler result docs... Thanks for reminding me not to forget that paper work :)
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Postby Miia » Fri May 21, 2010 10:25 pm

whyRwehere wrote:My husband is always feeling weak and walking badly when he is ill...and some antibiotics make him feel worse as well. I think you should be patient and see how you feel after the illness passes.
One point about the nurses speaking English in Poland: surely they could hire a translator until the nurse learn some English....they could be there if needed??


I got scared because I was walking fine on Wed and the next day I was again a drunken sailor and needed a cane. Yes, it's best to be patient and not think about it too much.

If the nurses study English while they're woking (not the same time, of course), how often they take lessons? Once a week? Twice?

My suggestion would be that Euromedic should give them iPods and buy them recorded courses to listen where ever they go. I did so. I lent Polish shortcourse (English-Polish) from library and listened it in plane on my way to Poland. I learned a few words. I bet if someone listens even passively every day some English course and tries to repeat the words an phrases, learning at the lessons with teacherr would be much much easier.
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Postby costumenastional » Sat May 22, 2010 12:35 am

vivavie wrote:I also have new symptoms, some started the day after the procedure; numbness in my left arm (stent in left jug) but the worst is my Jello brain;( I am not dizzy. It is more like if my brain moves and hits my skull) Very strange feeling. I have to stay in bed for days.


did it occure to you that it may be blood, reorganizing its route inside the small brain vessels after your jug has been stented?
i am only asking cause i can "feel" my brain too since op. its not so annoying as it is for you but its there. strange indeed but at this point i can onlt take it as a good sign.
dont be afraid. i suggest for both of us to give it some time and hope for the best. please, stay in touch.
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Postby AMcG » Sat May 22, 2010 2:16 am

I agree with Costume. Your system will be in a delicate state after the procedure. I got panicky when I got a cold and my symptoms seemed to surge again but I am great again now. Also if the procedure did make a big difference to your venous flow then your body needs to adjust to that... venules may need to repair/re-open. Collaterals need time to close down. There is no way of knowing how long that might take. Neurological damage is going to take even longer. Three months does seem to me to be a sensible time to wait before you try to assess what changes have happened. You already have some small but definite changes so something is definitely going on. I think you should just wait and try and relax and keep your chin up.
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