Mutley goes to Poland, and returns home liberated.

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

Postby LouK » Wed Dec 23, 2009 4:26 am

Mutley, thanks for replying and answering my questions. Most importantly, how are you feeling now?
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Postby costumenastional » Wed Dec 23, 2009 4:36 am

Hello!
Needless to say how valuable all these info are to the rest of us.
Having said that, i am on the line for an appointment in Poland myself. Hopefuly sometime in April.
As you have already covered almost everything, i can only think about one question:
It seems that your "vein problem" was not so serious. By that i mean that they only took care of one vein and i ve heard about all kinds of terrible problems so far, even agenesis. Did you speak with the doctors about how could this problem alone could be so harmful for your ms?
All in all, in their experience so far, was this serious enough to cause all these problems to you?
I know i may sound silly, and please bare with me. Just wondering as we all are, about how a damn vein can destroy our lives...

Thank you one more time and i wish you a miraculus recovery friend.

ps: i ll read over the post again in chance you already answered this question and i missed it.
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Postby willm » Wed Dec 23, 2009 6:40 am

Hi Mutley

Many thanks for your reply regarding injections. I havn't had any experience of self-injecting so that's a weight off my mind.

All the best!

Will
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Postby Mutley » Wed Dec 23, 2009 10:39 am

LouK wrote:Mutley, thanks for replying and answering my questions. Most importantly, how are you feeling now?

Hi Lou,

I’m doing really good thanks. I felt completely wiped out yesterday as I think that the last 7 days of living on my nerves finally caught up on me, but back on form today.

I need to see if this isn’t just a blip, but for the last few days I’ve noticed a big difference in the strength of my leg muscles and my ability to stop my feet from dropping so much. One of my big walking problems is that of foot drop and I’m forever tripping over my own feet. But I seem to have much better control of my feet, improved leg strength and improved core stability. This all adds up to quite an improvement when taking a short walk. I’ve been in a wheelchair for the last 6 months so there is a part of me that’s just not used to trying to walk so much, but I’m going to see if I can keep taking these short walks whilst holding my wife’s hand to see if I can build up some extra strength and tone. I’m very happy
:D :D :D :D
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 Mutley » Wed Dec 23, 2009 11:03 am

costumenastional wrote:As you have already covered almost everything, i can only think about one question:
It seems that your "vein problem" was not so serious. By that i mean that they only took care of one vein and i ve heard about all kinds of terrible problems so far, even agenesis. Did you speak with the doctors about how could this problem alone could be so harmful for your ms?
All in all, in their experience so far, was this serious enough to cause all these problems to you?
I know i may sound silly, and please bare with me. Just wondering as we all are, about how a damn vein can destroy our lives...


Hello costumenastional,

I didn’t ask I’m afraid. I think that this question may well be likened to how some people have minor brain lesions but major disabilities, whilst others have lots of lesions and few problems. Since these lesions are probably related to the locations in which the blood flow issues present themselves it seems that there are perhaps now too many variables involved to do much more than put your finger in the air.

In my case, it would appear that my problems may have as much to do with my head position while supine as it does with the narrowing they found in my Jugular. I had a narrowing in my right Jugular and may well have been giving myself a problem in the left if my head was pointed the wrong way.

It’s something I’d like to get checked out as I now need to know what the optimum head position is for me to prevent restricted blood flow.

Hope your appointment comes through OK.
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 Pepe » Wed Dec 23, 2009 11:15 am

Thanks Mutley for your answers and your information...

It would be nice to organise a get together so that we can all meet each other. Maybe we could go over to America and meet some of the American pioneers at the same time. I think an international group hug is a great idea.

Mutley, I could not agree more. It would be a unforgettable moment for the whole life of everybody.

Pepe.
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Postby Pepe » Wed Dec 23, 2009 11:57 am

I havn't had any experience of self-injecting so that's a weight off my mind.


Willm...do not worry about it. After several years... seeing my wife doing it every other day with Betaseron...it is a routine...please, do not worry at all...
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Postby ClaireParry » Wed Dec 23, 2009 11:57 am

You know what Mutley, that is music to my ears. My heart is beating hard!!

Fatigue, balance and footdrop are my biggest symptoms and if there was any improvement at all I would be eternally grateful
I await your news with baited breath!

Keep well

Claire
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Postby colapesce » Wed Dec 23, 2009 12:15 pm

hi Mutley,

Am so pleased to hear about your improvements. I too suffer from imbalance, fatigue and footdrop... and others.

I hope you keep getting better!
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Postby IbRiz » Wed Dec 23, 2009 1:01 pm

Hi Mutley

Congratulations with your operation and the great result!

I too went to Poland a few weeks ago, but I did not get the operation - just the tests. I went to the exact same hospital in Zabrze, and also to the clinic
on ul Rolna.

I have a question for you: You say they are operating on 8 patients a day - yet dr Simka has only done this on 10 patients so far?

When we asked him - he said 8 patients so far....

thanks - Christian
RRMS Dx'd 2009
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Postby Mutley » Wed Dec 23, 2009 2:26 pm

IbRiz wrote:Hi Mutley

I have a question for you: You say they are operating on 8 patients a day - yet dr Simka has only done this on 10 patients so far?

When we asked him - he said 8 patients so far....


Hi Christian,

I didn’t say that they are operating on 8 patients a day?

I can only share my observations and pass on the information I was given while I was there. My posts say:

1) Dr Simka has only liberated between 10 and 20 patients.
2) I think they aim for 4 in a day (well evening really) and I think they did two clinics during the week I was there totalling 8 patients all up.

The info about the number of patients he’s done came from one of the staff there.

And I say that I think they did two clinics/sessions while I was there because some patients who received stents earlier that week were leaving on the morning I arrived.

Hope that helps.
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 Johnson » Wed Dec 23, 2009 2:54 pm

Good going, Mutley. You must be very pleased, and to be showing improvement so quickly is very encouraging.

It is good too, to know that Dr. Simka, et al, actually exist. Like quite a few others, I have a tentative booking for Spring, but find myself waiting for the other shoe to drop; clinic to be shut down, doctors burn out, or something that will preclude my own treatment. I feel like e-mailing 5 times a week, but knowing the volume of e-mails Dr. Simka receives, I don't, and just have to go on faith that it will happen for me, as well.

Please continue to report your status. We all are of bated breath, I am sure.
My name is not really Johnson. MSed up since 1993
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Postby Brynn » Wed Dec 23, 2009 8:30 pm

Mutley, What terrific, exciting news! I just copied/pasted your entire thread to save for a great reference for my trip in September. :D What is so exciting for me is that I also was dx in 1998 with optic neuritis, went to SPMS in 2007 and am just now becoming overly familiar with my wheelchair right now, so to hear of all your gains when your story is so similar.....all I can say is YYYIIPPPEEEE!!! :lol: :lol: I will look forward to your continued healing and will relish hearing your updates! Merry Christmas! Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby pgm1 » Thu Dec 24, 2009 2:42 pm

Hi Mutley

So glad to hear that the procedure is working good for you,reading from everyone who has had it done and that it is working is just fantastic.im looking forward to my appointment in the spring i can hardly waite so so Happy

I was wondering if Dr Simka told you how they decide if a stent is needed or not,i do not want to have a stent put in unless i have to.How did you feel about Stents


Thanks Pam
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ccsvi treatment

Postby stevie » Sun Dec 27, 2009 1:30 pm

I have been looking for tests and treatment for ccsvi, I have ppms and i aint sure if I even have the strictures, HOWEVER I am keen to have it investigated. Was wondering if you have the @mail address for the DR simka I was very interested by your storey, I hope the treatment has the impact you had hoped for. I am yet to hear of anyone having the treatment for ppms. if there is anyone i would be pleased to hear from them :) Mutly it takes a great deal of courage to do what you have done good on you m8 stevie from Scotland
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