María's update

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

María's update

Postby Pepe » Wed Feb 17, 2010 5:07 am

Hi all,

To evaluate this update properly you should know that María, my wife, started with the infusions of Tysabri on June, 2009; and she has improved a lot since then. No doubts at all about this. On January, 18th 2010; she had the operation (OP) done in Katowice-Poland. The OP was angioplasty in the lower part of her left internal jugular vein. No stents were implanted. As I reported here one month ago, everything in Poland was OK. Once at home, we decided to start with the IBT. During the first week after the angioplasty the only improvement she had noticed was warmer feet. No more.

One month later we can report the following:

Improvements:

1.- Warmer feet.
2.- Better balance and stability.
3.- Better dexterity (agility). Less clumsiness.
4.- She can walk without having to look at the floor.
5.- Now, she can walk everyday 3 km. without fatigue.
6.- The spots (like big frekles...no birthmarks...) she has in her left leg are lessening, toning down. These spots appeared several years ago, and now are vanishing.
7.- Faltering, dificult, labored...breathing while sleeping. Gone.
8.- Bruxism (teeth grinding) while sleeping. Gone.

Negative side effects:

1.- As she goes out more... she wastes more money than usual. :(
2.- As she goes out more... I have to cook more times than usual. :(

To sum up, before the OP she was doing very well on Tysabri. After the OP, we are on the IBT and she has had a new infusion of Tysabri two keeks ago ...and now she is doing better than before the OP. Causes for these improvements?. Placebo effect? Tysabri?. Tysabry+OP?. Tysabri+OP+IBT?...Who knows! The important thing is that she feels better now than before.

PS.- I can not finish this report without expressing, once more, our deep sense of gratitude to Erika.

Regards,

Pepe.
Last edited by Pepe on Wed Feb 17, 2010 8:44 am, edited 1 time in total.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby ClaireParry » Wed Feb 17, 2010 5:13 am

I'm laughing so much Pepe :lol: :lol: :lol:

That's so amazing to hear. I'm so pleased for youu and Maria.

Let the shopping begin!!!!!!

Claire
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Postby cah » Wed Feb 17, 2010 5:24 am

Pepe, I'm so happy to hear this! Especially as you told me that there where almost no effect right after the procedure.

I wish to you and María even more and steady improvements!

Best

Cah
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Postby coin » Wed Feb 17, 2010 5:52 am

I am so happe for you guys...sounds so good and so promising...so intention is to contiunue on Tysabri?Any ideas for how long or you just let it "roll"??
very best and kidn regards and i keep my fingers crossed that your wife will become bettter and better and better and better.......!!
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Postby ErikaSlovakia » Wed Feb 17, 2010 6:36 am

I'm laughing as well :D :D :D
Very good report Pepe and María!
I am so happy for you!
3 km of walking is a lot 8O Good for you, María!

Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby kc » Wed Feb 17, 2010 8:21 am

pepe

Your post made me burst out laughing!!! I have been on ibt for 2 months and I feel better. I noticed yesterday that the money in my pocket is getting hot, not burning yet, but hot. Hopefully will catch on fire once I have been liberated!!!


kc
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Postby IbRiz » Wed Feb 17, 2010 9:58 am

Pepe - congratulations on Marias improvements! I am so happy for you.
I am really impressed with the 3 km walks! When I saw you guys in Poland - Maria was in a wheelchair!?


I'm glad to hear that the IBT is also doing Maria some good.

Too bad about the money though - maybe tie her shoelaces together? :lol:

christian
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Postby Pepe » Wed Feb 17, 2010 10:13 am

Hi,

Thank you for your comments...

cah: As I told you before...apart from warmer feet and hands she did not notice any special improvement just after the intervention...but after several days we realized that something good was happening. I am a sceptical and rationalist man...but, I can not negate the evidences: so far, she is improving her symtoms.

coin: Since 2003 she was doing very bad... This tendency changed on June, 2009 with Tysabri. The OP... or the OP+IBT... seems to act as an accelerator of this "recovery" process...We know the risks of Tysabri, but we also know the certainty of the symtoms. So that, our intention is to continue with the infusions of Tysabri. Until when? We do not know.

Erika: You are right! 3 km. is a lot for her!. This morning she repeated the walk again. Today she got tired because before walking she has had a very hard session with the physio. BTW, the physio realised 2 or 3 days ago that María was improving. I can not finish this post without saying that last Sunday we were walking through the beach... ans she was be able to walk the whole beach (more than 2 km.)...and this is something that she could not do for so many years. Erika, as you said several times... this is a process with 2 steps forward and 1 step back. We think we are covering the 2 steps phase. María has just told me to send a big hug to you.

Regards,
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby annbbe » Wed Feb 17, 2010 10:45 am

Pepe!!!
This post sounds great to me! I am on Tysabri since jan.27 2009. But a week before the op, and then the week after the op, I didn't want to take Tysabri. I had to check what was going to happen.
Tysabri helped me a lot. You probably don't know that i have tried so far rebif, betaseron, mitoxantrone..and nothing helped. Then i took my "last hope"= Tysabri. In one year I went down from 6,5 edss to 4 edss. The way it helped you can see for example here:
[ok, it's polish, but U don't need to understand to see my progress]
1. the day before starting Tysabri:
http://www.youtube.com/watch?v=Z1RY8pQ_G7k

and...
2. my last video, a week ago:
http://www.youtube.com/watch?v=Kns8tI4WFZY


I think the difference is clearly visible.


But...i thought that CCSVI would help me quickly. After two weeks from my op, i feel better, but there's a lot things which are still bad. Thank you Pepe for writing about your wife. Now i know that i just have to be patient.:)

I greeted nurses from You. Unfortunately I haven't met doctors on my op, so i couldn't greet them from you. There was one i didn't know the name:)

Take care, Pape&Maria. Hugs for you!

[/url]
Polish, 30yrs, dx 2000 RRMS, EDSS 5.

liberated in february the 2nd 2010:). Currently on double blind clinical trial with Avonex/Daclizumab.
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Postby Pepe » Wed Feb 17, 2010 10:59 am

Hi Christian,

Nice to meet you again...

Thanks for your comments. Yes, we have got a wheelchair. Although she always was able to walk short distances we decided to buy it on september, 2008. Since then, the wheelchair was always folded into the car...but this month was parked into the house. I did not realised that... until I´d read your post. I hope it will be parked into the house forever!

Too bad about the money though - maybe tie her shoelaces together? :lol:

:lol: Great idea! I'll try it...but.. you know...she is stronger now...! :lol:

A big hug Christian!
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby Pepe » Wed Feb 17, 2010 12:24 pm

Hi Annbbe,

It is true. The difference between the two videos is very big. I have been watching some of your videos in youtube, and I enjoyed a lot the one with the red wool hat with pompoms! Oh my God! You looks like a spanish bullfigther! :!: :!: :!: Olé! :!: :!: :!:

Annbbe, as I told before...apart from the warmer hands and feet we did not realised anything else during the first days...but, one day I realised that bruxism while sleeping was gone...another day...the first long walk...etc, etc, and with a lot of skepticism I asked myself: What is happening here?... In fact, one month after the procedure this is still a question: What is happening? Is it true? Is María improving? or is just a mirage, an illusion? To be honest, I have to say that she has had the improvements I reported before.

Annbbe, we are older than you; and, until now, we firmly believed that our generation we will not be able to see a solution for MS. Now, with the CCSVI, we do not know what to think about that. You are younger, you will have time to see new things. You can be optimistic!...so that, you should be optimistic!

All the best to you!
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Re: María's update

Postby AndrewKFletcher » Wed Feb 17, 2010 1:57 pm

Pepe wrote:Hi all,

One month later we can report the following:

Improvements:

1.- Warmer feet.
2.- Better balance and stability.
3.- Better dexterity (agility). Less clumsiness.
4.- She can walk without having to look at the floor.
5.- Now, she can walk everyday 3 km. without fatigue.
6.- The spots (like big frekles...no birthmarks...) she has in her left leg are lessening, toning down. These spots appeared several years ago, and now are vanishing.
7.- Faltering, dificult, labored...breathing while sleeping. Gone.
8.- Bruxism (teeth grinding) while sleeping. Gone.



Pepe.


Pepe, All of these improvements mentioned above have been achieved using only Inclined Therapy with many people who have ms! Even the skin colour changes that you mentioned!

In order to determine which is working better, would you consider returning back to a flat bed for a few weeks?

Foreversprings reports on this very forum confirm this statement along with many more in the Inclined Bed Therapy Threads.

Andrew K Fletcher
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Postby Pepe » Thu Feb 18, 2010 11:29 am

Andrew,

Thanks for your interest and your information. María does not want to give up the IBT. As you know we do not know what is working...but, after several years worsening...if something is working well now...better not to do changes... This is what she said to me this morning and I understand her position. Just a question: Do you think that the OP and the IBT migth be working together with a positive feedback? Thank you in advance for your answer.

Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby AndrewKFletcher » Thu Feb 18, 2010 4:06 pm

Pepe wrote:Andrew,

Thanks for your interest and your information. María does not want to give up the IBT. As you know we do not know what is working...but, after several years worsening...if something is working well now...better not to do changes... This is what she said to me this morning and I understand her position. Just a question: Do you think that the OP and the IBT migth be working together with a positive feedback? Thank you in advance for your answer.

Pepe.

Pepe,

What I think is based upon 16 years of research into Inclined Therapy and it's positive effects on people with multiple sclerosis with hundreds of people showing remarkable recoveries. Given sufficient time most of the symptoms you have mentioned as improvements can be achieved without any surgery! To add credence to this statement I urge you and others reading this to read through the Inclined Bed Therapy threads and try to find anyone who is not experiencing benefits from I.T. And should you find them, wait 4 weeks and read their later reports.

As to whether surgery has helped to accelerate these improvements we can only rely on the posts from people who have had the same surgery and not been using Inclined Therapy. These can be found in the CCSVI Tracking project. Study these reports and see if the same improvements have been achieved using angioplasty or stent procedures alone. Then weigh up the differences between those who are and those who are not using I.T combined with surgery. This is why I asked for an inclusion in the CCSVI Tracking thread to indicate whether or not I.T. is being used by the posters.

Given the results of the posture poll so far, it is difficult to understand how Neurological damage which is undoubtedly influenced, if not caused by posture can be restored when the posture that initiated it is not addressed. CCSVI and Surgery alone does not explain these non-surgery improvements seen in people on this forum who have tilted their beds and not received any surgical intervention.

Swollen twisted veins in the legs or varicose veins as we call them can be returned to normal looking veins by controlling posture alone. Surgery at best provides a temporary fix with varicose veins, because the surgery does not address what causes them to become varicose veins. More superficial veins will become varicose veins to take the diverted blood flow and it’s inherent high pressure. The swollen veins inside the neck and close to the spine are not disconnected from the same venous that supplies the legs, so there should be no doubt that these abnormal veins in the neck and next to the spine are undergoing the same reconditioning that the chronic venous insufficiency undergoes in the legs using I.T.

Zamboni has argued in an email to me that these veins cannot be restored using posture alone. If this is the case, then CCSVI cannot be the cause of ms! If this isn’t the case and these veins are becoming unrestricted due to avoiding a flat bed, and sleeping on an inclined bed, just like varicose veins have been shown to respond, then and only then can Zamboni’s theory be shown to play a roll in the onset of ms!

Another possibility is that everyone on this forum who is reporting positive results using Inclined Therapy 1. Is either involved in some major conspiracy to prove a layperson is correct about circulation and gravity 2. Placebo effect can be shown to stretch over 11 years of complete ms symptom relief with Terri Harrison. Zamboni argued that placebo couldn’t be entertained as an explanation for 4 months of symptom relief in a video relating to ccsvi procedure. Or 3. Inclined Therapy is bringing about these obvious improvements without surgery and if this is the case, then posture is identified as a definite causal effect and the big finger points at the way we all sleep and sit! CCSVI could indeed be the reason that some people sleeping flat develop multiple sclerosis and many people never develop neurological symptoms using a flat bed.

It would be simple to prove what is happening with regards to CCSVI by people asking for a repeat Doppler scan while laying at an angle, laying flat, sitting up and standing up. These are the parameters that should be tested immediately to determine what if anything is changing in the venous return.

We will have to be vigilant and wait to see if anyone who is about to have these tests will ask for a scan on an inclined platform or bed.
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Re: María's update

Postby annad » Thu Feb 18, 2010 4:11 pm

1.- As she goes out more... she wastes more money than usual.
2.- As she goes out more... I have to cook more times than usual.



Pepe, I've often thought that of myself. . . . that if i could do more, walk more boy we'd be in big financial trouble!

Spending money is a sign of health!!!!!

Great news!
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