No forum for CTOS

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

No forum for CTOS

Postby greyman » Fri Oct 15, 2010 12:31 am

So I'll write here :).
I have contacted Dr. Castillo Recarte in Madrid and - after some e-mail exchange - scheduled the date for CTOS diagnosis on 10th of Nov and the procedure, if necessary, on 18th of November this year.
I thought - what the heck - all of my impairments should be removed.

I had CCSVI angioplastied on 6th Jan this year, some of you might remember.

In case of any questions, shoot me :).

Br,
Adam
Last edited by greyman on Fri Oct 15, 2010 2:20 am, edited 1 time in total.
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Postby costumenastional » Fri Oct 15, 2010 2:03 am

Thanks for the heads up. I got no questions for the time being but I d surely like to know how it goes when possible especially about the diagnosis.
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Postby blossom » Fri Oct 15, 2010 4:49 pm

greyman, great that you can get this done. you may have posted this about yourself and i missed it. would you mind telling your age, type ms, lenght of illness, and extent of disability? i think you are the first at this site getting this done.

i'm really anxious to hear all about it.

i'm for certain praying you come back a new and cured person. one shoe may not fit all but for those that can-- leave no stone unturned. the very very best.
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Postby HappyPoet » Sat Oct 16, 2010 7:02 am

greyman wrote:I have contacted Dr. Castillo Recarte in Madrid and - after some e-mail exchange - scheduled the date for CTOS diagnosis on 10th of Nov and the procedure, if necessary, on 18th of November this year.

Wow! This is so exciting for you. You're going to one of the world's leading doctors for CTOS diagnostic testing/treatment -- I wish I could join you!

greyman wrote:I thought - what the heck - all of my impairments should be removed.

I completely agree. I believe people should pursue every possible avenue before accepting the "MS" diagnosis as the cause of neuro symptoms. It's a travesty when other conditions/syndromes are misdiagnosed as "MS."

What other kinds of treatments and diagnoses have you tried?

First, I pursued CCSVI (venoplasty). I can now sleep, and M-T was ruled out;
Second, I looked into nutritional deficiencies, thanks to jimmylegs -- she has great advice and links and is always willing to help. My Vit D3 level was close to zero, so now I supplement. Unbelievably, I had to fight with my PCP to order these tests for me;
Third, I pursued CCVBP (Atlas Orthogonal) and can now walk on feet that are not numb anymore -- treatment continues;
Fourth, I'm just now starting my pursuit of ruling in/out CTOS;
Fifth, I'll start back at the beginning again with repeat blood tests for Lyme disease and others... maybe some of the tests are now more sensitive/accurate than they were ten years ago when I was diagnosed with RRMS.

I wish you all the luck in the world!
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Re: ctos

Postby greyman » Sat Oct 16, 2010 10:03 am

blossom wrote:greyman, great that you can get this done. you may have posted this about yourself and i missed it. would you mind telling your age, type ms, lenght of illness, and extent of disability? i think you are the first at this site getting this done.



Hello
Last time I forgot to add signature - some info about my case is there.
But I'm not sure any more if my MS is RR any more. I haven't had a relapse for the last two years (I've been on Tysabri during that time - I stopped before of some side effects but that's another story). Is it SPMS already? Dunno. Certainly hope not.
Thank you very much for your prayers. I myself think and hope the best for everyone from this site.

HappyPoet wrote:I completely agree. I believe people should pursue every possible avenue before accepting the "MS" diagnosis as the cause of neuro symptoms. It's a travesty when other conditions/syndromes are misdiagnosed as "MS."

Couldn't be said better
HappyPoet wrote: What other kinds of treatments and diagnoses have you tried?

Diagnoses: lyme disease, Wilson's disease
Treatments: Rebif, Tysabri, angioplasty
I have to check M-T still.
HappyPoet wrote:My Vit D3 level was close to zero, so now I supplement. Unbelievably, I had to fight with my PCP to order these tests for me;

I haven't tested my vit D levels. I will do so next week.
HappyPoet wrote: I wish you all the luck in the world!

And same to you HappyPoet, and every MS patient anywhere in the world!

Regards,
Adam
RRMS, 1998 L optical nerve, diagnosed 2000. Self-assessed EDSS 4.5-5.0
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Re: ctos

Postby HappyPoet » Sat Oct 16, 2010 7:48 pm

Hi Adam,

So sorry you have Lyme and Wilson's -- very interesting that you accumulate both iron (CCSVI) and copper (Wilson's) in the brain. I hope any treatment for this "MS" mimic is helping.

Please update re Vit D (and others) test results -- complete vitamin/mineral testing should be part of standard "MS" diagnostic blood work, but too often, such testing is not.

Did you receive any symptom improvement with your CCSVI angioplasty?

Have you ever had any chiropractic work done? Spinal X-rays taken?

Thanks!

~Pam
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Postby Trish317 » Sat Oct 16, 2010 8:07 pm

HappyPoet wrote:
greyman wrote:I have contacted Dr. Castillo Recarte in Madrid and - after some e-mail exchange - scheduled the date for CTOS diagnosis on 10th of Nov and the procedure, if necessary, on 18th of November this year.

Wow! This is so exciting for you. You're going to one of the world's leading doctors for CTOS diagnostic testing/treatment -- I wish I could join you!

greyman wrote:I thought - what the heck - all of my impairments should be removed.

I completely agree. I believe people should pursue every possible avenue before accepting the "MS" diagnosis as the cause of neuro symptoms. It's a travesty when other conditions/syndromes are misdiagnosed as "MS."

What other kinds of treatments and diagnoses have you tried?

First, I pursued CCSVI (venoplasty). I can now sleep, and M-T was ruled out;
Second, I looked into nutritional deficiencies, thanks to jimmylegs -- she has great advice and links and is always willing to help. My Vit D3 level was close to zero, so now I supplement. Unbelievably, I had to fight with my PCP to order these tests for me;
Third, I pursued CCVBP (Atlas Orthogonal) and can now walk on feet that are not numb anymore -- treatment continues;
Fourth, I'm just now starting my pursuit of ruling in/out CTOS;
Fifth, I'll start back at the beginning again with repeat blood tests for Lyme disease and others... maybe some of the tests are now more sensitive/accurate than they were ten years ago when I was diagnosed with RRMS.

I wish you all the luck in the world!


HappyPoet, what is CCVBP and does that involve chiropractic treatment? I'm asking because my darling man also experiences numb feet. He started to feel some relief immediately after his CCSVI procedure but in a few days they went back to being numb again. Because of the broken neck he sustained in his 20's (he'll be 59 next month), and the subsequent neck surgeries (the last one was five years ago) that have completely fused the vertebrae in his neck, I don't know if he'd even be a candidate for any type of chiropractic treatment.

I'm very interested in CTOS. I think it's another piece of the puzzle.
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Postby HappyPoet » Sun Oct 17, 2010 12:50 am

Trish317 wrote:HappyPoet, what is CCVBP and does that involve chiropractic treatment? I'm asking because my darling man also experiences numb feet. He started to feel some relief immediately after his CCSVI procedure but in a few days they went back to being numb again. Because of the broken neck he sustained in his 20's (he'll be 59 next month), and the subsequent neck surgeries (the last one was five years ago) that have completely fused the vertebrae in his neck, I don't know if he'd even be a candidate for any type of chiropractic treatment.

I'm very interested in CTOS. I think it's another piece of the puzzle.

Hi Trish,

CCVBP = Chronic Craniocervical Venous Back Pressure.

CCVBP involves only the upper cervical spine, and there are several approaches. Dr. Flanagan (uprightdoc) recommended an excellent Atlas Orthogonal chiropractor very close to my home. You should definitely ask him about your darling man's case.

Here's a link to his thread: CCSVI and CCVBP

Best wishes,
~Pam
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Re: ctos

Postby greyman » Sun Oct 17, 2010 2:21 am

HappyPoet wrote:
So sorry you have Lyme and Wilson's -- very interesting that you accumulate both iron (CCSVI) and copper (Wilson's) in the brain. I hope any treatment for this "MS" mimic is helping.


No no, I don't have it ;). I mean lyme and Wilson's - just tested to rule it out and to definitely diagnose MS.

Br,
Adam
RRMS, 1998 L optical nerve, diagnosed 2000. Self-assessed EDSS 4.5-5.0
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Postby Trish317 » Sun Oct 17, 2010 7:39 am

HappyPoet wrote:
Trish317 wrote:HappyPoet, what is CCVBP and does that involve chiropractic treatment? I'm asking because my darling man also experiences numb feet. He started to feel some relief immediately after his CCSVI procedure but in a few days they went back to being numb again. Because of the broken neck he sustained in his 20's (he'll be 59 next month), and the subsequent neck surgeries (the last one was five years ago) that have completely fused the vertebrae in his neck, I don't know if he'd even be a candidate for any type of chiropractic treatment.

I'm very interested in CTOS. I think it's another piece of the puzzle.

Hi Trish,

CCVBP = Chronic Craniocervical Venous Back Pressure.

CCVBP involves only the upper cervical spine, and there are several approaches. Dr. Flanagan (uprightdoc) recommended an excellent Atlas Orthogonal chiropractor very close to my home. You should definitely ask him about your darling man's case.

Here's a link to his thread: CCSVI and CCVBP

Best wishes,
~Pam


Thank you, Pam. I'm going to do some research.
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Re: ctos

Postby HappyPoet » Sun Oct 17, 2010 3:25 pm

greyman wrote:No no, I don't have it ;). I mean lyme and Wilson's - just tested to rule it out and to definitely diagnose MS.

I am very happy you don't have them!! :D Sorry for the mix-up!

Trish317 wrote:Thank you, Pam. I'm going to do some research.

There's a lot of information regarding CCVBP -- if you have any questions, Dr. Flanagan will be glad to answer them to help you along the learning curve which I found to be similar to the learning curve of CCSVI - steep.
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Postby greyman » Fri Nov 12, 2010 12:23 pm

Just a short report. I've just returned from Madrid, where I visited dr. Castillo. The main news is that I DO have CTOS, on both arteries.
More details tomorrow.
Br,
Adam
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Postby blossom » Sun Nov 14, 2010 8:25 pm

curious to hear your news after the doctor told you that you have ctos.
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Postby HappyPoet » Mon Nov 15, 2010 1:31 am

Hi greyman,

So good to hear from you!

Congratulations on your diagnosis. CTOS of both arteries! Wow! I take that to mean you have CTOS on BOTH SIDES? Yes, please let us know the details. Did Dr. Castillo say if your condition is congenital? Will he be removing muscle and bone? On both sides? Below is a pic that shows CTOS on one side:

Image

I gave a summary of CTOS in the "CCSVI and CCVBP" thread (page 3, link below) created by Dr. Flanagan. If you haven't already read this article written by Dr. Poblete Silva, I think you might find very interesting what he says about MS and CTOS:

http://www.thisisms.com/ftopic-14005-da ... sc-30.html

I just can't stop wondering how many of us who have been labeled with "MS" are really cases of UNdiagnosed and MISdiagnosed conditions/syndromes. I believe I am one of those cases.

Wishing you (and everyone!) the best of luck.

:)
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Postby CCSVIhusband » Mon Nov 15, 2010 5:03 am

I believe you still have MS ... but I think you're right in that it results from other conditions (CCSVI, CTOS, etc).
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