Cece wrote:Can a port be removed? Does the vein heal?
My immediate reaction is anger and dismay that something that was an attempt to help a patient's MS (getting a port put in for chemotherapy) turns out to have been the wrong thing to do, since it was a jugular port. And this means the vein has been subject to toxic chemotherapy? On IVUS, can you tell if it looks scarred from this? The valve was unusually thick, could the chemotherapy have worsened it? In chemotherapy, are there any guidelines for checking to see if both jugulars are viable before inserting ports into either of them? Should there be such guidelines?
These veins are important and they have been treated as if they are not and put at risk.
eric593 wrote:While the port was not placed in the jugular vein, how do you know that placing the port at all and administering treatment through it didn't stabilize the patient for 18 months and produce a benefit? Why do you assume it was a damaging mistake?
Cece wrote:There are two conditions here: MS and CCSVI.
Chemo may or may not have helped the MS. But it appears to have worsened the CCSVI.
eric593 wrote:Evidently many many healthy people live quite well with CCSVI and no intervention. MS, not so much according to natural history progression studies.
eric593 wrote: (and certainly no reason to feel anger or dismay about another's choice to try to stabilize a progressive, debilitating illness with an approved treatment)
HappyPoet wrote:Your "thousands of questions" made me smile. I hope your friend does well after her procedure. Lots of supine rest (so the jugulars can have extra sheer-stress time for healing) and lots of water (so important). Cheerleader (Joan Beal) has an excellent endothelial health program at the CCSVI Alliance website, www.ccsvi.org
MikeInFlorida wrote:I was not offended at all, and I am sorry if my post had that tone. I actually thought I was agreeing with you (LOL). Another example of why I don't write for a living.Cece wrote:I hope nothing I said offended.
Cece wrote:So there is both an innominate vein stenosis and a subclavian stenosis in addition to the jugular valve stenosis, or did I get that wrong? I've gotten a few things wrong in this case so far! Thank goodness there is a RIJV because this left one is worse than expected.
drsclafani wrote:The port was placedd into the subclavian vein, not the jugular vein. I suspect that the subclavian vein stenosis resulted from puncture of the subclavian vein. The catheter tip was like located at the inominate vein and the chemotherapy might have made this stenosis.
MikeInFlorida wrote:eric593 wrote:Evidently many many healthy people live quite well with CCSVI and no intervention. MS, not so much according to natural history progression studies.
Because of the high correlation between MS and CCSVI, your first sentence is contradicted (or at least mitigated) by your second.
MikeInFlorida wrote:eric593 wrote: (and certainly no reason to feel anger or dismay about another's choice to try to stabilize a progressive, debilitating illness with an approved treatment)
Just because a treatment is approved, does not mean that it was administered correctly. If was not, perhaps anger is justified. I believe that dismay is allowed under any circumstance if the desired outcome is not achieved.
Cece wrote:He mentioned this here too.
Cece wrote:At the least, this case gave Dr. Sclafani a workout. And we like to see him challenged.
Cece wrote:Dr. Sclafani, would the 'puff' of contrast out to the side be the contrast refluxing into the subclavian?
eric593 wrote:Was the unused port flushed regularly with heparin?
I'm sure we were. We had 4 doctors involved (Neurologist, Oncologist, Primary Care, and Surgeon), and they were all wonderful, competent and caring. We probably got all the same info from all 4, but it has been a long time.eric593 wrote:I'm sure you must have been given information about the risks and side effects of having a port inserted.
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