This Is MS Multiple Sclerosis Community: Knowledge & Support

Has anyone lost the ability to move their legs after CCSVI and still not got the ability back after 6 months.
Also regain lost ability to transfer after CCSVI. (SPMS-do have flow)
Thanks, Bob

**deleted due to being rude and did not mean to be** I am very sorry for my harsh words. I did not mean any disrespect. Just opened my mouth and should have put my foot in it instead of being rude. I am sorry!

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Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!

Salerdog, I'm very sorry to hear of your results. While I haven't heard any reports of exactly what you're experiencing, there have been a few people who have reported worsening pretty much immediately following treatment. That is obviously unfortunate, but there is no denying it's out there.

What did you mean about "do have flow?" Have you had a doppler/ultrasound since treatment? If it wasn't a Zamboni style, I would see about getting one of those. It is possible you have a restenosis causing this. Hopefully Cece will comment here as she knows a lot about these possible complications.

Hang in there.

My wife Trish SMPS was liberated 24 Sept. Received 2 stents which clotted and have since cleared as she has flow, per Barrie vascular. Since she got off the table can not control her legs, can not turn over in bed at night, needs assistance with all transfers and her left hand is virtually useless, can not walk or stand. Prior to her procedure she could move her legs, turn in bed, and handle her own transfers, limited walking with walker. Her feet are not so swollen and discolored as before the procedure. Fatigue slightly better, and cogfog never was an issue.

Bob,
I'm so sorry to hear about Trish's change for the worse & I'm sorry you have been unfairly questioned. It is obvious by your previous posts that you are a legitimate caregiver & as a pwMS, I can say that you caregivers are a blessing - I have a wonderful & supportive husband as well.

Have you talked to the doctor who performed her procedure for some advice or possibly Dr. Sclafani's - he is so good at responding & may have some insight.... It is horrible to be worse when what you were looking for was improvement. All my best wishes to you.

Deb

That sounds awful. When you have hoped for improvement, and then to find yourself in this situation. Your wife is so fortunate to have you as her partner. (My spouse left after the MS dx.)

I am going to say what I often say to people who suddenly get increased symptoms -- before you assume it's directly MS related, make sure a doctor checks for any other condition that could be causing symptoms -- infections, bladder retention, a medication reaction, anything. I have had doctors say that *every* issue I have must be just my MS, but I have also had doctors examine me properly with an open mind -- and then find something different and treatable.

I am thinking all the best to you, and hoping your wife gets the best atention and some relief. Again, what a blessing to have a supportive spouse!

Sorry, I am editing this to really emphasize my suggestion -- I think many of us have experienced a somewhat lesser degree of health care because doctors assume that every single thing we experience is from the primary diagnosis of MS. But people with MS get other issues too!

I wanted to share one of my worst examples -- I had severe pain, spasticity, weakness, etc. -- really excruciating -- and I went to both my neuro and my primary care doctor, both of whom said, in effect -- what do you expect? You have MS!

I was scheduled for a spinal MRI anyway, and guess what -- they found a broken vertebra, the cause of my symptoms. I had told both of these physicians that I'd had an accident with my wheelchair flipping over on top of me. But they were so used to seeing me as an "MS patient" that they were not open to any other possible explanation for my issues, even given the history of an accident and me asking if that could be related -- not until the coincidental MRI showed what had happened.

So you always have to be a strong advocate and ask for a proper health evaluation!

OK, best wishes again.

I haven't been treated, so I don't have personal experience to share. So sorry about Trish's outcome. I hope it turns around for you,

I too am sorry your motives were questioned. You don't need additional stress in this difficult situation.

I'm glad you posted the information here, even though it isn't what we want to hear. Best wishes for you and your wife.

I don't think soapdiva meant any wrong, she was stating her suspicion and asking for more info, which Bob has given. (And it might be the very name "Bob" that raises hackles....)

Where are the stents, are they in separate jugulars? High up or by the valves, if you know? If they clotted then cleared, that might not restore them as open as they would've been to start. I wish you had access to venograms in Canada. It is possible to balloon the inside of a stent. When you say it has flow, it might have a small amount of flow compared to what it could have. Some doctors (including, once, Dr. Sclafani) have placed stents within stents but that's more if it is growing closed, not for clotting. I would see a doctor just for the stent issue, but again, Canada.

On the Barrie vascular, does she still meet the criteria (2 out of 5) for CCSVI?

But the big question is the decline, immediately after the table. Do you know how quickly the clots occurred? They can be that same evening, I think of L's story in Egypt, that was very quick, as was CD's.

Two other thoughts that come to mind: we had someone posting recently asking about spasticity and everyone responded with, yes, here's how bad it is, here's what you can do about it, but she was actually posting because her spasticity had decreased after the procedure and, since spasticity can mean rigid leg muscles, she was LESS able to walk once the procedure had gotten rid of the spasticity for her. I have heard this before about spasticity, that it is a mixed curse or maybe a mixed blessing. I do not know though other than that one patient reporting spasticity improvements if it is common to have spasticity improvements or if anyone else reported that odd scenario where the improvement made it harder to walk.

The other thought that comes to mind is the azygous. Was anything treated in the azygous? We don't know for sure, but when you say she does not have cogfog issues but does have mobility issues, that might mean azygous issues. So it's possible that something was missed there. I don't consider an azygous fully checked until it's been checked with IVUS...which my own azygous wasn't! (But I am trusting Dr. Sclafani on that one.) (Also Dr. Sinan's method of ballooning the azygous a bit to check for waisting might be a workable substitute for IVUS, although more invasive).

When her jugulars were ballooned, did it cut off any blood flow to the brain? I had this, where my face turned beet red. I think that could bring on a relapse or do some damage, depending on how long the balloon is open. It was because my jugular on the other side was 100% blocked, if there had been other blood flow outlets this would not have happened.

There was also one anecdotal story of an azygous thrombosis that resulted in paraplegia. Heard it from a friend who heard it from a friend...but these are reliable friends.

Was the procedure and travel very stressful? The stress and then the clotting might have set her up for a decline until the clotting resolved itself.

I wish there were better answers. The best is to see an IR experienced in CCSVI.

Cece,
I disagree. When I read Bob's post & the next reply.... I thought - what am I missing - what is suspicious?? I took the time to look at Bob's 11 previous posts and clearly saw the communication of a caring, loving, concerned spouse & the details he was so brusquely asked for, were there already! Why must someone's plea for help be suspect - where is the concern for fellow MSers? When did we start shooting first & asking questions later? I know my heart aches for someone who is in this predicament. Any one of us could land in this "worse than before" category & to be accused of something other than looking for help & support is what is questionable & suspect - just my humble opinion....

Bob, I'm seriously sorry for interfering on your thread. I hope you find some answers & help.

What?!? Why?!?

As always, Cece, your input is very valuable. Bob (good, solid name--was my father's name!), keep asking the questions and trying to find the answers. I wish I could advise you. Even more, I wish your wife could get the help she needs and deserves right here in Canada!

You apology is a class act. We have all done similar things at times. (Actually, I shouldn't speak for others--I know I have.). Thanks for stepping back in to address it so directly.

Now, let's all try to figure out a way for Bob to help Trish!

Cece thanks very much for the time you took with your reply. Very appreciated.

Two stents in the left jug only. One is mid and the second lower. Done on Friday morning and by the following Monday morning they had clotted.(Excellent collateral drainage.) Suspect clot might have happened shortly after procedure, because her blood pressure was way below normal in the recovery room, and it took prox 1 hour to get it back close to normal. Barrie confirmed good flow jugs at 35 days after procedure.

Spasticity - still has, and when they did the procedure, which took over 3 hours, she had an incredible amount of spasticity in her legs. (They jumped for the whole time.)

Blood flow to the brain - right was opened first and cleared, therefore did not have situation of no blood flow to brain.
Albany suggestion, if you have flow, then need to see a neurologist.

Considering a second round, although reluctant to jump at it when only a third get improvement and science does not know why two thirds get little to no improvement, with some going backwards. Can not afford another backwards if you know what I mean. Hugs Bob

To Soapdiva884, apology accepted. Hope John does better. Thanks Bob

I don't have any medical qualification, so I cannot say what you or she should do or not do or start or stop taking. All I can say is this sounds like a very unusual case. Many doctors are reluctant to help people who have had complications from this procedure, not for the usual reasons but because neurology and medical bureaucrats have threatened their licenses. It is possible to recover from patient lawsuits, and many doctors carry insurance for this. However losing one's license is catastrophic. IRs associations or some other institution that believes in the Hippocratic oath should challenge these deep pockets in court.

Your problem sounds to my uneducated ears like some unusual form of CCSVI or nerve problems caused by something that happened during the Procedure. Maybe other veins or nerves are involved. We share the twitching, but I think Dr. Siskin would have told me if I had had them during the procedure.

I have still not got to the bottom of it, but I am also heat sensitive, and core heat seems to cause it. It could be that the lesions themselves (scleroses) are the problem. Or not. I don't know but you need expert help I myself have no confidence in neurologists, but that being said I just saw Avis Favaro doing a new piece on CTV on Dr. Hubbard. If anybody can help now it may be somebody of the caliber of Dr. Scafani or him.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I saw you say that jugulars were treated and there was a clotting problem. Was the azygos treated and is there a clot there? Clots move too so it could be there is now a piece of one causing trouble. But if the trouble started before the clot in the jug was treated, it doesn't sound like a moved clot.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience