This Is MS Multiple Sclerosis Knowledge & Support Community

I often like irony. But when the irony is, in an honest attempt by all parties to make MS better through chemotherapy, it made things worse...that's not the fun kind of irony.

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.

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?

Are you equally as angry at dania's interventional radiologists whose intervention resulted in scarred veins, leaving her with permanent damage and deteriorating health? Or do you have a bias against treatments showing double blinded efficacy in spite of risks in favour of a treatment with no such objective evidence but that has permanently damaged or harmed some patients?

You seem to have a double standard in your assessment of treatments that leaves questions about objectivity and credibility. I think it is important to apply the same rigourous scrutiny to any treatment modality. In spite of its effect on veins, chemo treatments in MS have been shown to beneficially impact MS in double blinded large scale trials. Your anger might be misdirected when chemo treatment has helped many people, possibly this patient as well.

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?

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.

You are focusing on my use of the word anger when dismay was the stronger of the two emotions.

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.

Evidently many many healthy people live quite well with CCSVI and no intervention. MS, not so much according to natural history progression studies.

I can find no fault with any doctor who puts a patient on an approved MS treatment, backed by randomized, double blinded trials, for their MS, regardless of its potential effect on CCSVI, which was likely not even a consideration over 18 months ago (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).

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.

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.

I am curious if Dr. Sclafani is correct about the puncture wound(s). I sat with my wife for each of the 18 chemo sessions, and I remember that accessing the port was more painful for her on some visits than others.

I also wonder if the port entry point to subclavian intersection results in stenosis. I'm trying to understand the bond/seal mechanism. If there is endothelialization, maybe pathological scarring occurs over time (happens with stents, doesn't it?). Also, could it have been a tear upon removal of the port?

As far as the stenosis in the innominate (the chemo release point), I wonder if the flushing protocol needs to be reviewed.

Finally, I wonder if we left the port in too long? After the conclusion of the chemo treatments, we left the port in place. Whereas Novantrone treatments are limited to a lifetime total of 10 (or so), I don't think that there is a fixed number of cytoxin treatments (unless, of course, you die). We left it in for an additional 20 months (during which time we periodically asked for, and received assurances that leaving it in would result in no harm), at which point we decided to have it removed. It has been out for 16 months (approximately).

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

Thank you (and Cece earlier) for the welcome. And thank you for the link... we'll definitely check it out. As for the questions... I still have them, but I'm pacing myself.

MikeInFL, I hope nothing I said offended. My 'anger and dismay' might best be summed up as grieving, and railing against circumstances, and looking for how things could've been different. I grieve my own adulthood spent living with symptoms that have now been improved upon venoplasty.

Cece wrote:I hope nothing I said offended.

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.

MikeInFlorida wrote:

Cece wrote:I hope nothing I said offended.

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.

No, it came across as agreement, and very well said.

It makes a case a lot more personal when this is not just any vein but your wife's vein.

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.

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.

I'm going to defer to Dr. Sclafani on all issues that have not yet been discussed by him. In fact, I'll probably keep my mouth shut until he has finished presenting the case. I certainly did not intend to get ahead of him on anything, and for that I apologize to all, but especially to my favorite Doctor.

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.

He mentioned this here too. Now I think there are more stenoses than we can count. Or, ok, three. A stenosis in the subclavian, one in the jugular valve, and maybe one in the innominate. And a fourth in the jugular on the other side.

At the least, this case gave Dr. Sclafani a workout. And we like to see him challenged.

Dr. Sclafani, would the 'puff' of contrast out to the side be the contrast refluxing into the subclavian?

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.

There are many studies now that do not show a high correlation between MS and CCSVI, or any correlation at all. Your first premise is not based on the bulk of research available.

Even if there were a clear association between CCSVI and MS, this in no way indicates CCSVI has a detrimental effect on health. This is supported by the Buffalo study that showed a fair number of healthy controls that had CCSVI with no apparent detrimental health effect. There are certainly no studies that show that worsening MS is due to CCSVI. Even the study that showed that some with worse MS had worse CCSVI, as we know, correlation does not mean causation. But studies are all over the map whether CCSVI and MS are even associated though with many showing no difference in CCSVI levels between MSer's and non-MSer's.

I don't see the contradiction you refer to.

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.

We don't know if her treatment was administered correctly. Certainly there can be side effects even when a treatment IS administered correctly. It not only might have been administered correctly, it might have improved her MS course. I don't think "dismay or anger" are appropriate when the patient and her doctor chose a treatment to try to delay her MS progression that might have had side effects or risks involved. The patient is not the one expressing anger or dismay, Cece, an uninvolved observer is.

And if the port caused a stenosis, clearly that stenosis was not related to her already compromised health status that resulted in her undergoing chemo treatment to begin with - we have no idea if that stenosis impacted her vascular health or her MS at all.

Cece wrote:He mentioned this here too.

Thank you for pointing that out. I thought I had given away the surprise ending.

Cece wrote:At the least, this case gave Dr. Sclafani a workout. And we like to see him challenged.

My wife has always been an overachiever. Even with diseases.

Cece wrote:Dr. Sclafani, would the 'puff' of contrast out to the side be the contrast refluxing into the subclavian?

I feel free to comment here, since I am in the dark on what this picture means. I think I agree with you, Cece, that this is the subclavian... it looks like the correct geography. But why would it reflux in that direction? The innominate must have an opening (even with a stenosis), or the IJV could not have been accessed. If there is an opening, there should be flow. If there is flow, the contrast should be pushed into the SVC.

Could the collaterals that resulted from the subclavian injury create a vacuum and reverse flow?

Perhaps it is more likely that the catheter occupies the entire diameter of the residual lumen of the innominate?

Dr. Sclafani- can the diagnostic ECD performed prior to the procedure see the innominate (or is there too much bone in the way)?

Mike,

Was the unused port flushed regularly with heparin? I know doctors don't like leaving unused ports in indefinitely for no reason, but if there is an anticipated future use, it is a matter of weighing risks against benefits. Ports usually only last for up to 5 years anyway. I'm sure you must have been given information about the risks and side effects of having a port inserted.

eric593 wrote:Was the unused port flushed regularly with heparin?

Good question. I don't know what it was flushed with, but I don't think it was heparin. It was a subdermal port.

If my wife doesn't remember, I'll have the records pulled. You've got me curious.

eric593 wrote:I'm sure you must have been given information about the risks and side effects of having a port inserted.

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.

However, I think I would remember if we were warned that the subclavian and/or innominate could become impatent. Then again, 4 years ago, I wouldn't have known the definition of most of the words in the previous sentence.