CCSVI procedure failed...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Cece
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Re: CCSVI procedure failed...

Post by Cece » Sun Dec 16, 2018 11:53 am

ricleal wrote:I'm going to see my doctor today and see if he can refer me to do a echocardiography (echo color doppler). I have no idea how to check the overall condition of the IJVs.
A doppler is a good idea. It should be able to show if there is flow in both IJVs. Did your doctor refer you? If he was against the venoplasty, then he may be able to believe that the venoplasty could have caused some harm, so it would seem reasonable to look and see if any harm occurred.

What about following up with the doctor who originally performed the venoplasty?

Cece
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Re: CCSVI procedure failed...

Post by Cece » Sun Dec 16, 2018 12:08 pm

ricleal wrote:I did experience some benefits on frequency and intensity of headaches.
There has been some intriguing research on CCSVI treatment in patients with headaches.
It's possible you are a nonresponder and it's not worth pursuing CCSVI any further.
It's possible your IR did not inflate the balloon far enough and no lasting improvement was made. It's possible it was inflated too far and damage was done. It's also possible that stenoses were missed. Was your venoplasty done by someone with experience in CCSVI? There's a Dr. C in MN and a Dr. H in Chicago who might be better options. I would have wanted a one month follow-up doppler, if it were me, especially after going off of the prescribed anticoagulation. A follow-up doppler now is still a good idea. Even out of pocket, how expensive is a doppler? (If the answer is extremely expensive, sigh, that's unfortunate.)
Wishing you the best.

Headache research:
the research paper https://journals.plos.org/plosone/artic ... ne.0191534
easier to undersand MS news today article:https://multiplesclerosisnewstoday.com/ ... -patients/

ricleal
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Re: CCSVI procedure failed...

Post by ricleal » Mon Dec 17, 2018 7:36 am

Thanks all for the replies!
So I proposed an echo doppler to my doctor but he sent me for a CTA...
Everything normal according to the doctor that read the CTA - They only look at the arteries though. :(
Anyway, I sent the CTA to the doctor who originally performed the venoplasty, and as far as he can see the veins are still open. If there are stenosis, they are below... the CTA don't show (IJV + brachiocephalic vein junction).
Anyway. 80% of me is more relaxed now.

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Re: CCSVI procedure failed...

Post by ElliotB » Mon Dec 17, 2018 10:27 am

And how are you feeling (with regard to the procedure)?
Last edited by ElliotB on Mon Dec 17, 2018 12:51 pm, edited 1 time in total.

ricleal
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Re: CCSVI procedure failed...

Post by ricleal » Mon Dec 17, 2018 11:01 am

ElliotB wrote:And how are you feeling?
The same.. It might be a relapse :( I have no idea.
I'm experiencing episodes of 1-2 hours. Then I feel normal once the pain is gone.... (in the literature this is called I think MS paroxysmal symptoms).
Carbamazepine appears to be very effective but I don't want to bump up the dose. I'm at 400mg/day and I have already a lot of eczema (a preliminary symptom of eosinophilia). My eosinophils are also high in the blood test.
Anyway, the pain is getting more intense. It used to be focused on the head, and now it's on my face. It leads me to think about trigeminal neuralgia...
I left a message for my Neuro. Let's see what he says...

Cece
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Re: CCSVI procedure failed...

Post by Cece » Mon Dec 17, 2018 11:45 am

ricleal wrote:the CTA don't show (IJV + brachiocephalic vein junction)
That would be the primary area that would need to be seen and the most likely area where you were treated during angioplasty. Sigh. You could still benefit from a doppler of that area but it doesn't seem like your doctor is onboard.
Anyway, the pain is getting more intense. It used to be focused on the head, and now it's on my face. It leads me to think about trigeminal neuralgia...
I'm sorry to hear that. I hope it goes away or that your neurologist has a treatment to help it.

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jimmylegs
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Re: CCSVI procedure failed...

Post by jimmylegs » Mon Dec 17, 2018 12:08 pm

still no movement on the nutrient status front then? http://www.thisisms.com/forum/chronic-c ... 17004.html

i'm no diagnostician but this possibly related item was in search results:

Reversible Cerebral Vasoconstriction Syndrome (2015)
Reversible cerebral vasoconstriction syndrome (RCVS) is an underappreciated and poorly understood cause of thunderclap headache (TCH).

Table 1. Differentiating Reversible Cerebral Vasoconstriction Syndrome and Overlapping Conditions
RCVS
Treatment Calcium channel blocker, magnesium, analgesia, avoid triggers
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

ricleal
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Re: CCSVI procedure failed...

Post by ricleal » Mon Dec 17, 2018 1:03 pm

jimmylegs wrote: Reversible Cerebral Vasoconstriction Syndrome (2015)
Reversible cerebral vasoconstriction syndrome (RCVS) is an underappreciated and poorly understood cause of thunderclap headache (TCH).
RCVS Treatment Calcium channel blocker, magnesium, analgesia, avoid triggers
Never had heard about that!!!
Almost looks a like what I have. But my headaches have been like this for may be 8 months... Never stopped. They are just getting worse.
Also what gives some relief is Carbamazepine, a sodium channel blocker, not a calcium channel blocker as they describe. The doctor that reviewed the CTA should have found that. The only thing abnormal in the report was "Incidental dilated perivascular space seen adjacent to the left sylvian fissure"...
My MRI clearly shows demyelination lesions... typical of MS :( So I'm puzzled. I will bring this to the neurologist.

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jimmylegs
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Re: CCSVI procedure failed...

Post by jimmylegs » Mon Dec 17, 2018 3:22 pm

hi i'm definitely not suggesting that your dx is rcvs.
i'm looking at vasoconstriction, spasticity and pain, plus the fact that magnesium is a go to treatment in that scenario (among many others).
one of magnesium's hundreds of jobs: sodium channel blocker
also (re demyelination) among the essential metals magnesium is an important building block for myelin construction

*edit: related follow-up posts transferred dec 26 to natural approach forum, under topic 'nutrition and ccsvi'*
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Cece
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Re: CCSVI procedure failed...

Post by Cece » Mon Dec 24, 2018 6:09 pm

jimmylegs I love how knowledgeable you are about nutrients and vitamins
good luck and merry christmas to all

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jimmylegs
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Re: CCSVI procedure failed...

Post by jimmylegs » Wed Dec 26, 2018 1:54 pm

hopefully does some good, cece! all the best to you and yours :D
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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