No forum for CTOS

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

Postby greyman » Mon Nov 15, 2010 5:22 am

HappyPoet wrote: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? (...)


Hi HappyPoet
Yes, on both sides.
Dr. C-R hasn't said if it's congenital however I'm awaiting a thorough analysis of my case via e-mail. Maybe it'll be there.

I'll try to write something more this evening CET.

Adam
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Postby bruce123 » Mon Nov 15, 2010 10:07 am

My wife suffers from shoulder and arm pain. It is unique as it comes on about 5 times per day and only lasts about 45 minutes. It is quite sever but when it is gone she is fine. Her neurologist has never heard of this type of pain before. He has consulted with a number of MS experts and nobody has ever heard of pain that comes on for a short time many times per day.

When doing research on this I came across TOS and mentioned it to her neurologist. He thought it was worth looking at so he ordered an MRI. She has not had it yet.

Since then another specialist has told her that it can't be TOS because the pain would only be in the arm, from the armpit down, and would not be in the shoulder.

Any comments on this?

Bruce.
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Postby HappyPoet » Mon Nov 15, 2010 11:28 am

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

If, after ruling out everything on my differential diagnosis list, I am one of the unlucky ones still left having to deal with "MS," regardless of whatever "it" is called and whatever causes "it," I'll have to start Tysabri. :(
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Postby HappyPoet » Mon Nov 15, 2010 11:33 am

greyman wrote:I'll try to write something more this evening CET.

Looking forward to your post! Hoping it's good news!!

:)
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Postby CCSVIhusband » Mon Nov 15, 2010 12:11 pm

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

If, after ruling out everything on my differential diagnosis list, I am one of the unlucky ones still left having to deal with "MS," regardless of whatever "it" is called and whatever causes "it," I'll have to start Tysabri. :(


I mean that in the way I've stated before ... MS is a symptom (resulting fron the condition of CCSVI, CTOS, etc).

If you consider MS scars ... then the scars are permanent (or semi-permanent and long lasting, like scars on the skin) ... maybe some heal, maybe some never do.

So your condition may be treated, but you're still left with MS.

That was my point.

I think the interesting thing we're not talking about, because this isn't really the appropriate place is how NFL players have a MUCH higher incidence of ALS than the general population. (another unexplained neurological disease) Is it the result of concussions? - not all NFLers have concussions (nor do all people who don't play in the NFL yet develop ALS) ... Is it the result of veins/capillaries/arteries/nerves being compressed? I don't know that, but it's possible. ... I think there is going to be something there in the end as well ... but science needs to catch up. At least it's being investigated and critically thought though (does that make those doing the thinking 'skeptical'?
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Postby blossom » Mon Nov 15, 2010 8:15 pm

happypoet, for those of us like you say that are ruleing out stuff and have had ccsvi procedure with no real positive results, look at the broadness of this ccsvi site.

so, lets hope that for us not helped yet---that this is like the saying--------

the darkest time of the night is right before the dawn!!
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Report from Madrid

Postby greyman » Tue Nov 16, 2010 1:37 am

Disclaimer.
If you:
- don't know Madrid very well
- don't speak Spanish
- are not an aggressive driver
then
NEVER rent a car in Madrid.

This is my advice after some bad experience with driving in that city but I don't want to go to details.

I'll only describe the visit in dr. Castillo y Recarte's office.
The office itself is situated in a 3-bedroom flat at Churruca 5 street. My wife and I waited 5 minutes before the doctor showed up.
Dr. Castillo is a smiling warm person in his 50s. After introductions he conducted a very thorough interview with me. Not only did he ask about my MS but also about any other aspect of my health life. Accidents, fractures, vision, hearing, scars... Everything! This was anew for me as in Poland the doctors ask only about the mainstream disease.
Later we all went to the examination room. There the doctor examined me:
- internally
- neurologically
- laryngologically
Then the main dish was to be served - checking if I have the CTOS syndrome. First, while seated, I lifted one of my arms and Dr. Castillo was checking if the other changes its colour. It didn't. The doctor had said that this could indicate no CTOS, but the Doppler examination was to be most reliable.
So then, supine, I was Dopplered, first with my arms lying along my body and then put behind my head. The doctor was checking the blood flow velocity in the arteries. It should be equal (or at least almost) in both positions of the arm. Difference greater than 20% indicates CTOS for surgical repair, 5%-20% for physiotherapy repair. Less than 5% is acceptable.
I had ~30% on both sides. CTOS confirmed. I was pre-qualified for the surgery. Now I'm waiting for a more detailed description of my case from Dr. C-R and starting collecting money :-).
(later, Dr. Castillo checked also all of my internal organs with the scanner - they all were ok)
That was practically the end, I got dressed, paid 380 euro and left.

I hope the report is detailed enough, please ask questions if you have them.

BR,
Adam
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Postby Mutley » Tue Nov 16, 2010 3:34 am

Hi Adam,

Firstly let me say thanks for starting this thread. I do hope this ends up in starting a dedicated CTOS forum, I think it’s needed. Sorry to hear that you can now add CTOS to Lyme disease and Wilson's disease, but let’s hope that you can find some relief with being treated for these :D

It’s been really helpful of you to share your experiences. I’ve been looking at CTOS for a while now and trying to determine whether it applies to me. I have been in contact via email with Dr Recarte and have the option of being tested but what has stopped me is that I’m not sure we’re communicating too well because of the language barrier. I’m translating my emails in and out of Spanish with Google but it’s not too clever. So I’m wondering how well you managed to communicate with him or if perhaps you can already speak Spanish? Are you English?

Out of interest, which of your symptoms do you think might be related to CTOS?

I know that I have a problem on both sides of my neck caused by my neck muscles really squashing my Jugulars, but I can’t find anybody who can treat this. I’m wondering if Dr Recarte could help but I don’t know if these problems are really part of CTOS or are something else.

Thank you again Adam, all the best to you.
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 greyman » Tue Nov 16, 2010 3:49 am

Mutley wrote:Hi Adam,

Firstly let me say thanks for starting this thread. I do hope this ends up in starting a dedicated CTOS forum, I think it’s needed. Sorry to hear that you can now add CTOS to Lyme disease and Wilson's disease, but let’s hope that you can find some relief with being treated for these :D

It’s been really helpful of you to share your experiences. I’ve been looking at CTOS for a while now and trying to determine whether it applies to me. I have been in contact via email with Dr Recarte and have the option of being tested but what has stopped me is that I’m not sure we’re communicating too well because of the language barrier. I’m translating my emails in and out of Spanish with Google but it’s not too clever. So I’m wondering how well you managed to communicate with him or if perhaps you can already speak Spanish? Are you English?

Out of interest, which of your symptoms do you think might be related to CTOS?

(...)


Hi Mutley
I'll explain once again - I don't have either lyme or Wilson's. I've just been tested against those :-).

The Dr. assigned me to a date when his Australian cousin was supposed to be available to translate (that's his normal procedure).
Unfortunately the cousin fell ill at that time. But Dr.'s English is quite ok, we were able to communicate, sometimes guessing the other party's thoughts. No major problems there. And I don't speak Spanish :).

Symptoms related to CTOS? I have no idea. But I more and more prone to thinking that all my neurological problems are caused by a bike accident that I had in 1997. It all just makes sense.

Adam
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Postby Mutley » Tue Nov 16, 2010 3:59 am

Sorry Adam, I must have misinterpreted your post that talked about Lyme/Wilson Diagnoses.

Thanks for the info, I’m a little more confident in heading over there now. Apart from the prospect of any driving. Like you, my Madrid driving experiences haven’t been good ones.

What’s the layout of his office like? I’m in a wheelchair and wonder about stair problems etc?

Thanks again.
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 greyman » Tue Nov 16, 2010 4:02 am

Mutley wrote:What’s the layout of his office like? I’m in a wheelchair and wonder about stair problems etc?


The flat is wheelchair ununfriendly. So maybe not too friendly but still possible to cope.
To get to the lift one has to climb 2 or 3 stairs. Stupid. Assistance needed.

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Re: Report from Madrid

Postby HappyPoet » Tue Nov 16, 2010 11:29 am

greyman wrote:The doctor was checking the blood flow velocity in the arteries. It should be equal (or at least almost) in both positions of the arm. Difference greater than 20% indicates CTOS for surgical repair, 5%-20% for physiotherapy repair. Less than 5% is acceptable.
I had ~30% on both sides. CTOS confirmed.

Wow! 30%! On both sides!
You were so smart to pursue CTOS, and I'm so proud of you. Now you know what's causing some, if not all, of your neuro problems. Thank you so very much for sharing all the information with us. TIMS is a journey of learning!

bruce123 wrote:When doing research on this I came across TOS and mentioned it to her neurologist. He thought it was worth looking at so he ordered an MRI. She has not had it yet.

Since then another specialist has told her that it can't be TOS because the pain would only be in the arm, from the armpit down, and would not be in the shoulder.

Any comments on this?

Bruce.

Fire the specialist and find another. From my research for you, this specialist is wrong; there is well-documented shoulder pain with CTOS.

This is a terrific TIMS' thread about CTOS -- a must-read post by SammyJo contains lots of information: http://www.thisisms.com/ftopicp-110993.html I hope your wife finds the right doctor and gets the right diagnosis.

CTOS Symptoms:
Headaches (migraine), neck and thorax pain, chest pain and arm numbness, shoulder pain, shortness of breath, sleep apnea, diurnal apnea, memory deficit, absences, disorientation, dysphagia, dizziness, tinnitus, urinary incontinence, speech difficulty, loss of consciousness, ipsilateral palsy, severe stress, temporomaxillar joint pain, amaurosis fugax, tachycardia, dysmenorrhea, profuse menstrual bleeding, severe constipation, paresia, snoring, facial paralysis, pseudocarpal tunnel syndrome, coldness of the hands and feet, profuse perspiration, thenar, hypothenar atrophy, Raynaud disease and others.
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Postby blossom » Mon Nov 22, 2010 10:47 pm

greyman, do you have any updates you'd like to share about ctos? been thinking about you. i hope all is going good for you.
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Re: ccsvi

Postby greyman » Wed Nov 24, 2010 2:01 am

blossom wrote:greyman, do you have any updates you'd like to share about ctos? been thinking about you. i hope all is going good for you.


blossom, thanks for your interest and warm words.

No, I don't have any updates yet. It's already been two weeks since my visit at dr. Castillo's office. I sent an e-mail to him today asking when the description of my case would be available.
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Postby greyman » Wed Nov 24, 2010 11:41 pm

OK, I got some answer. Is there anyone speaking Spanish here :) ? This time I don't want to count on the stupid translators, too many doubts. OK, here's the answer from dr. C-R:

Estimado Adam, ya ha salido el tratamiento para tu domicilio, tu caso puede
ser intervenido, pero como ya te comunique el otro día, no se cuanta
mejoria encontraremos, ya que los pacientes no evolucionan todos igual.
La decision es tuya por supuesto, y lo que decidas estara bien.
Mientras tanto quiero que hagas el tratamiento hasta que decidas lo que
sea.
Saludos y cuando recibas el tratamiento me escribes por si tienes alguna
duda.

Is any one able to translate it for me?

Thank you in advance.
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