CCSVI with a trach?

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

CCSVI with a trach?

Postby codefellow » Fri Dec 23, 2011 8:17 am

I kept my wife updated on CCSVI and angioplasty, as much as I understood. Despite her very advanced MS (paralyzed from the neck down), she decided to wait for more research and clinical trials. Since her cognition is 100%, I had to respect her decision.

But after her last infection, she now can only breathe with the aid of a trach. This is one more tube in her after a colostomy, in-dwelling catheter, and feeding tube. I want to point out to her that if she is ever going to take a chance on a new treatment for MS, now would be the time.

But it may be too late for her anyway. Can angioplasty for CCSVI be performed on someone who has a trach?
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Re: CCSVI with a trach?

Postby Cece » Fri Dec 23, 2011 9:37 am

I am sorry to hear her MS has advanced so far. You'll need a doctor's answer for the question about the trach, unless someone comes along who has a trach and was able to have angioplasty. I googled trach and angioplasty and it's on the high risk list for people getting carotid artery stenting (a completely different condition than CCSVI, but also in the neck) but that is due to risk of cerebral emboli, which is a risk on the artery side and not on the venous side, as I understand it.

So my guess is that CCSVI angioplasty would be possible on a patient with a trach. It would be a concern if the doctor thought the benefit of the procedure is not worth the risk, which might be higher in a more ill patient. Some doctors have declined to treat patients in the upper EDSS levels, but other doctors will take on these patients.

Keep us posted....are you in Canada? The logistics of getting someone to treatment get challenging.
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Re: CCSVI with a trach?

Postby codefellow » Fri Dec 23, 2011 2:12 pm

Cece wrote:Keep us posted....are you in Canada? The logistics of getting someone to treatment get challenging.


No, fortunately I am in New Orleans. Dr. McGuckin visits here from VAC every once in awhile, so if she chooses to go forward, he would be the one I would want to do it, that is, if he would even agree to take her.
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Re: CCSVI with a trach?

Postby Cece » Fri Dec 23, 2011 2:44 pm

Contact information for Dr. McGuckin:
For inquiries related specifically to The Liberation Procedure for CCSVI, please email us at: liberation@vascularcenters.com or call us at 877-VAC-4USA (use prompt #6).

I think he's a good doctor. He comes across as very personable in his videos, and I liked his simple printed diagram of the human body that he then marked where the patient had been treated and handed it over afterwards. He seems to be more likely to balloon in more areas than some other IRs. He was ballooning the iliac in 70% of CCSVI patients, which is a higher percentage than the other IRs are finding, so the question is if he is ballooning patients that don't need it or if other IRs are not ballooning patients who do need it. I believe he was also ballooning and not stenting the renal or iliac vein. If it's a mistake to balloon it, then it might be a double-mistake to put a stent in it; but if it is a true compression, then a stent is what is appropriate, because a ballooned vein will simply get compressed again.

Dr. McGuckin is one of the few doctors whom I can't think of one bad thing his patients have had to say about him. Now that I've said that, maybe someone will come forward, but I think it speaks to the general satisfaction of his patients and his own likeability.
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Re: CCSVI with a trach?

Postby NHE » Sat Dec 24, 2011 4:17 am

I don't know about the trach. That would be a good question for Dr. Sclafani. In the meantime, you may wish to read one of the several threads about Barb Farrell if you haven't already.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic12566.html


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Re: CCSVI with a trach?

Postby Cece » Sat Dec 24, 2011 10:17 am

Last year's Christmas Miracle thread too:
www.thisisms.com/forum/chronic-cerebros ... 14928.html

That was a patient with advanced MS, with a feeding tube. No later updates.
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Re: CCSVI with a trach?

Postby MegansMom » Thu Dec 29, 2011 7:25 am

Although there are more things to consider besides a trach in someone paralyzed from the neck down for the physician to consider, I would think someone with a trach has less risk than a paralyzed person without a trach. A tracheostomy ensures a patent airway by removing the normal neck structures so the physician can know that her airway can be maintained and controlled. I would think that you would want the procedure to be done in a hospital vs an outpatient facility as it can provide an anesthesiologist/ nurse anesthetist to provide additional ventilatory support. Keep trying to find someone.It will be interesting to see if she has extensive azygos involvement as this effects the spinal drainage.Best of luck.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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