6th Jan 2010 (Katowice) - POST-OP

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

Postby greyman » Sat Jan 09, 2010 4:38 am

kats wrote:So happy for you Adam. :D . The Image was good to see.
Did the doctor say why balloons for you and not stents? Or was this your choice to have the balloons? instead of the stents or do they assess what is better for each patient? :D . Can you honestly see instant results? I hope you keep getting improvments please post as you see them will encourage all of us readers to get tested and liberated.
Thankyou for all your updates great to see you are doing well I will keep checking your posts with your improvments as they come.


Hi Kats
Thanks :).
To be honest, dr. Simka right after the Doppler said that ballooning would probably be enough to get rid of those problems. And later, neither dr. Ludyga nor anyone asked me what I wanted. Kind of funny for me was dr. Ludyga and Simka's phone conversation app. 2 hours before my procedure. I mean I heard only dr. Ludyga saying: "Aaa zastawki? To przepucujemy je balonami!" transl. "Ah, valves? So we'll just brush them with balloons!". I really liked the word "przepucujemy" which is a very informal word for "we'll brush" :). After the procedure, when dr. L showed me the screen, he told me that they had decided to use balloon angioplasty because stents are really when no other choice is possible. The more so that the balloons did the job very well in my case.
Instant results?
OK, let's be honest:

Objective:
1. Warmer hands
2. Much smaller vertigo

Subjective:
1. Better stair tackling (up and down) (<- smaller spasticity?)
2. Better heat tolerance. Today I took shower warmer than usual to check. And felt nothing wrong afterwards.

But the subjective ones may be just results of a better day which we MSers all have, amongst those worse.

Adam
Last edited by greyman on Sat Jan 09, 2010 10:10 am, edited 1 time in total.
User avatar
greyman
Family Member
 
Posts: 70
Joined: Thu Dec 10, 2009 3:00 pm
Location: Poland

Advertisement

Postby JoyIsMyStrength » Sat Jan 09, 2010 9:54 am

greyman wrote:
Instant results?
OK, let's be honest:

Objective:
1. Warmer hands
2. Much smaller vertigo

Subjective:
1. Better stair tackling (up and down) (<- smaller spasticity?)
2. Better heat tolerance. Today I took shower warmer than usual to check. And felt nothing wrong afterwards.

But the subjective ones may be just results of a better day which we MSers all have, amongst those worse.

Adam


Adam you are a breath of fresh air. Thanks for caring enough about the rest of us waiting in the wings to give honest, accurate assessments. I'm sure everyone else is doing their best on this, too, everyone has been fabulous actually, but I especially appreciate your objective/subjective breakdown. When the subjective ones become lasting, you can move them to the objective column! I said "when" in an effort to wish you more and more good days. :-)

Pam-Joy
User avatar
JoyIsMyStrength
Family Elder
 
Posts: 164
Joined: Fri Jan 01, 2010 3:00 pm
Location: US

Postby Johnson » Sat Jan 09, 2010 4:08 pm

Thanks for the update, Adam. Keep getting better!

I really liked "przepucujemy" too. I find the Polish language reassuring in translation. I have a great interest in languages, and how they shape our thinking (or vice versa), and I appreciate the phrases you have written here. It gives me a small insight into the minds of the doctors. My three years old son is running around the house saying "prosze pana super!" I've got 5 months to learn more.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 3:00 pm
Location: Ucluluet, BC

Postby colmmc » Tue Jan 12, 2010 8:43 am

Hi Greyman
hows things?

colmmc
User avatar
colmmc
Family Member
 
Posts: 73
Joined: Tue Dec 15, 2009 3:00 pm
Location: Knutsford England

Postby greyman » Tue Jan 12, 2010 9:23 am

colmmc wrote:Hi Greyman
hows things?

colmmc


Hi
I came back to work on Monday and it's been hectic since.
But hey - I don't need to have a rest after coming back home! Wonder why ;). I can instantly start playing with my son! My wife can have a rest then. I hope it stays.
It also seems that this smaller spasticity wasn't just my imagination. I would say that 40-50% of it is gone.
Additionally I sleep more soundly. I don't need that amount of sleep in the nights as I used to.
My blood pressure got higher, meaning to the values a 28-year old male should have. It used to be 100-115/70-75, now it's 125-130/80-85.
Remember my warm hands? Additionally the skin on them has become smooth. In the winter it was always very rough and bad-looking.

There's so much snow here, that Poland hasn't seen since 1996. And it's a problem for me. Alas it doesn't seem to melt any soon. The forecasts say that the below zero temperatures will stay here until the end of the month. Let us have faith then ;).

Adam
User avatar
greyman
Family Member
 
Posts: 70
Joined: Thu Dec 10, 2009 3:00 pm
Location: Poland

Postby Cece » Tue Jan 12, 2010 9:27 am

greyman wrote:Cece, below pictures with indications of where the problems were.


Thanks, I see them now (circles and arrows being helpful!).
Cece
Family Elder
 
Posts: 9053
Joined: Mon Jan 04, 2010 3:00 pm

Postby colmmc » Tue Jan 12, 2010 10:04 am

Good to hear That thing are going well.It gives us all hope.
bring on November.
colmmc
User avatar
colmmc
Family Member
 
Posts: 73
Joined: Tue Dec 15, 2009 3:00 pm
Location: Knutsford England

Postby greyman » Wed Jan 13, 2010 9:39 am

tipsyturtle wrote:Wondering if you are experiencing any pain from the procedure and are you on medication?


Hi tipsyturtle,
sorry for not answering before. No pain whatsoever. I take heparin shots (today is my last - alltogether 7 of them) and blood thinning meds. The latter ones I'm supposed to be taking for 6 weeks.
Rgds,
Adam
User avatar
greyman
Family Member
 
Posts: 70
Joined: Thu Dec 10, 2009 3:00 pm
Location: Poland

Postby tipsyturtle » Wed Jan 13, 2010 1:16 pm

Thanks Adam,
So happy for you that you are doing so well. I am curious about the drug issue as I've heard that some people are on meds indefinitely after the procedure but that may be due to stents.
Thanks again. Please check in when you can as we are all interested in how you are doing. I also am headed to Poland in April (hopefully).
jo (tipsyturtle)
User avatar
tipsyturtle
Family Member
 
Posts: 56
Joined: Sun Nov 29, 2009 3:00 pm
Location: Canada

Postby greyman » Tue Jan 19, 2010 3:24 am

Hi
Just to report a bit.
My spasticity somewhat returned and I'm a bit worried that this may be an effect of a restenosis.
Is it at all possible only two weeks after the procedure?
Adam
User avatar
greyman
Family Member
 
Posts: 70
Joined: Thu Dec 10, 2009 3:00 pm
Location: Poland

Postby jimmylegs » Tue Jan 19, 2010 4:04 am

adam, do you do anything on the nutrition front? there are lots of known nutritional sub-optimals in ms patients.. some caused by meds, some not.. surgery won't correct deficiencies as far as i can tell..
jimmylegs
Volunteer Moderator
 
Posts: 9143
Joined: Sat Mar 11, 2006 3:00 pm

restenosis

Postby Dovechick » Tue Jan 19, 2010 6:35 am

Adam, if you are worried get in touch with them. Ballooning is not always permanent as quite a few people have found. I think I remember reading in the original research paper that up to 50% of patient had suffered subsequent stenoses. Wonki is going back on the 25th because he has had the same problem.
So email them.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
User avatar
Dovechick
Family Elder
 
Posts: 349
Joined: Sun Feb 12, 2006 3:00 pm
Location: Sussex UK

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service