DrSclafani answers some questions

[drsclafani]

The great doctor is wise.

I do look forward to hearing the clotting theory though but if I have learned anything at all about this CCSVI, it is to be patient... as difficult as it is.

I am still learning that one. It is a matter of chiseling an "im" away from impatient. Impatient to I'm patient....

as long as you dont change "im" to "in"...last thing i want for you is to be an in-patient.

Perhaps there will be enough information shared after ISNVD to curb my impatience that way.

how prophetic!

Do you see, the viewcount is already up to 501,280 after just hitting 500,000! Up and up and up.

Sorry, no questions. I am still thinking about this idea of a funnel.

i will find a picture for you

[drsclafani]

My son was in for a routine eye exam for new contacts and they discovered inflammation of his optic nerve. Now they want to proceed with further tests next week, of course telling him it could be possible MS or brain tumor. He is 28 years old, works two jobs, but has no medical insurance. I was diagnosed with MS 11 years ago, had CCSVI procedure in October 2010 with pretty good results. I am reluctant to have him continue with further testing and possibly labeling of a MS condition at this point. I would almost prefer for him to go ahead with a venogram or a wait and see course of action before putting it in the hands of a neurologist . Any advise or suggestions would be greatly appreciated.

That is an interesting take on this. if this is his first episode of ON, it could be a clinically isolated syndrome, or it could be MS or any number of other medical problems.

At the current time, i think that your son should see a neurologist, but he could also consider getting a CCSVI ultrasound too.

[drsclafani]

Hi,

I went to Katowice in July. I was on the mend for 13 days and then all was worse than ever. I have steadily declined with all NEW symptons. One of my worst is that I am shaking uncontrollably down my right side. I'm in Canada so doctors don't care a wick about me. Have you heard of others having this sympton or similar?

Thank you,

Julie

sounds cerebellar to this amateur electrician. I have never heard of this, although it is possible to have an exacerbation after liberation.

its not reported but that could happen because of limited followup during medical tourism.

s

[drsclafani]

Hi Dr Sclafani i had my second procedure in early november of 2010 the clinic i was in placed a stent in my left IJV, a thombosis occurred which is now blocking that vein by 60% i am on warfarin anti coagulant since treatment and the thrombus is stable. my symptoms are now worse than before my first treatment.

were there any other stenoses n oted?

My question is after all this time will it be possible to remove the thrombus via chemo mechanical thrombectamy or some other way or am i now stuck with a 60% reduction in that vein because it will now be solid scar tissue? Also is it possible to balloon the vein again now the stent (14mm) has healed in? what are my options from here?

it could be intimal hyperplasia mixed with clot. it is possible to compress the intimal hyperplasia.Also, if only the LIUV was worked on, i would bet there is something else lurking around

Im in the uk but have no issues travelling anywhere to get back the improvements i felt after my first procedure.
After 12 years i had a fantastic 'months holiday' from my MS and am worried that i'm now not going to be able to get back where i was.
Thankyou so much for the time you have commited to our cause.
Andy.

I think you should look for someone nearer than farther. you complicated situation needs lots of care

[drsclafani]

Dr. Sclafani,
This may be a strange question, but here goes. After I had my ccsvi procedure in 2009, I was doing better. I've had MS for 27 years, never the RR form. In February I had a fall in which I fell into a corner betweeen two doors and caught my cheek bones on the two right angle door frames so my head was thrust back as a result. I've also had a fall down 6 stairs that could have also been a contributing factor.
I saw my treating physcian during a post op visit and was still doing well at that point. I was a self-assessed 6.5 EDSS and still remain at that level. Seems like I have backed up some. My question is that because of my fall history and some of the symptoms I am currently experiencing which I had not previously (fine motor skills difficulty) is it worth looking at the possibilty of Chiari malformation as a possibilty even though it may be minimal and does not rise to the level of getting that diagnosis although could be still causing some problems? Would have shown up on the MRI I had done prior? I'm not implying that MS is not an issue but it may not be the only issue. I am aware that MS and CM share some symptoms. Just because a patient has a diagnosis of one condition does not mean that something else can't be part of the picture. I don't see MS and CM as mutually exclusive. They could be conditions that could co-exsist. I am aware that the length that I have had MS translates into more axonal death and therefore more permanent disability. Just curious as to why I seemed to be doing well and now not as well. I am aware that Dr. Zamboni's data suggest that PPMS and SPMS patients seem not to do as well as those with RRMS It may be that this is all so new, still and no one knows. Your thouthts would be appreciated.

of course other conditions could be in play.

but consider the possibility that your fall was a manifestation of recurrence. My suggestion is to not put all your eggs in one basket. Therefore in addition to CM, i suggest you get a zamboni ultrasound to see why your symptoms have returned. I am thinking restenosis, something one should expect in a patient who has been treated in 2009

[drsclafani]

Dr Sclafani,

about OCT; In Poland (March 2010) i had an OCT scan, in Februari 2011 i had a GDX scan in Holland. Because of the difference in tests, the doctor would/could not 'speak out loud'....but she thinks she sees improvement in the status of the optic nerve (what would not be possible).

In December 2011 second GDX test.....i'm curious...

Robert

robert, i cannot answer your question. Perhaps "phlebologist" could answer your question

[drsclafani]

5. Clinical results were pretty good, but not randomized. One study only showed improvements in fatigue.

Clinical study of ccsvi treatment via ballooning/stenting?
Do you mean sustained improvement of fatigue?
Can you elaborate on #5 a bit?

they measured many parameters but the only parameter that showed significant improvement was fatigue. Most of cases were treated by balloon angioplasty

[drsclafani]

Physical Therapy as follow up to treatment for CCSVI

Dear Dr. Sclafani,
Thought I would try this in the public thread As you know, I was treated originally on January 10th, had thrombosis of the left IJV . . so that was cleared out on Feb 4th, I'm on coumadin. doppler showed some clotting again yesterday, but I have no reflux. I now have Left IJV's 1 and 2 (a large collateral).

I was formally diagnosed RRMS in July 2008. I was still fully mobile at that time.

I've had some very good improvements (which I should put in the Tracking project thread). I think I fit in the moderate improvement category. I'm not in stiletto heals.

I have stronger legs, still some numbness in the top of my feet, I feel my lower legs a bit more. My feet are sensitive to temperature where they were not before.

I still do not have full control of my legs, although if I concentrate, I can walk without a cane but must think of every step. Balance is still questionable, I DO have much less brain fog and can sleep and dream.

I feel as though progression has stopped.

Its been recommended by other MS friends and a nurse at Dr. Haskals office, as well as one of the MSketeers, that physical therapy is AS important to regaining lost mobility.

QUESTION IS THIS: I'd spoken at length with Dr. Suchin about this, but have not gotten an indication that this should be a standard part of the treatment process . .physical therapy.

It's been said by the nurse, Angela and Carol Schumacher (treated by Haskal), that we should be treated as a stroke patient.

Then we could recover a lot more. Has this been discussed among you? Do you believe this will become part of the treatment/recovery plan?

I'd love if there were some sort of recovery plan and referal partnering for PT.

Thanks!

Judy

i suggest physical therapy to all my patients. if parts start working again, they need retraining

[CCSVIhusband]

Dr. S ... have you changed your view on how often a patient should have follow-up ultra-sounds to check for thrombosis after angioplasty?

Also, a d-dimer test ... there was talk about that in other threads regarding thrombosis ... is that something you'd recommend after angioplasty? If so, when and how often?


And finally, I think everyone seems to be really scared of thrombosis lately, can you give us a percentage of patients who may be experiencing this? (which then relates back to the two questions above this one).

[drsclafani]

Dr Sclafani... I had my second CCSVI procedure by Dr Haskal in Baltimore 3 days ago (I live in St Louis). Right IJV stent and azygos look A-OK. However the stent in my left IJV is completely occluded by scar tissue. Dr Haskal told me that scarring in/around stents is not uncommon. Of course my subjective feelings are : YIKES !!!. The original procedure I had from Dr Sclafani was last August 17 and my symptoms were wonderfully improved.

i assume you mean siskin. i was still in exile at that time.

Dr Haskal also told me that this stent problem can be treated with a more complicated procedure (open surgery?), but we should wait to see how my symptoms go.

If scarring in/around stents can be a side effect, are there no proactive measures to prevent this or make it less likely ? Is this a good reason NOT to choose stents ? My stenosis is/was very high in my IJVs... up by my jaws and ears.

ozarkcanoer

high occluded stents are not particularly good candidates for surgery, if you ask me. Lots of important structures up there. suturing a vein up that high very difficult sometimes.

yes there are measure that can be used. anticoagulation proper sizing of the stent, antiplatelet therapy. drug eluding stents (not yet available).

but yes, this is a good reason not to choose stents unless absolutely necessary.

[Cece]

The great doctor is wise.

I do look forward to hearing the clotting theory though but if I have learned anything at all about this CCSVI, it is to be patient... as difficult as it is.

I am still learning that one. It is a matter of chiseling an "im" away from impatient. Impatient to I'm patient....

as long as you dont change "im" to "in"...last thing i want for you is to be an in-patient.

Clever

[drsclafani]

Dr. S ... have you changed your view on how often a patient should have follow-up ultra-sounds to check for thrombosis after angioplasty?

Also, a d-dimer test ... there was talk about that in other threads regarding thrombosis ... is that something you'd recommend after angioplasty? If so, when and how often?


And finally, I think everyone seems to be really scared of thrombosis lately, can you give us a percentage of patients who may be experiencing this? (which then relates back to the two questions above this one).

yes, i have reduced the number of ultrasounds, eliminating the one month and the ninemonth and considering a 24 hour ultrasound checkup before the patient leaves town.

i dont use d-dimer test. We have never been able to rely upon it. Also when should we time it? The day after, week after month after angioplasty.

i am a bit more concerned about the hypercoagulability of the antiphospholipid syndrome (Hughes sydnrome) which can mimic MS to some degree.
i am thinking to get a hematology consult on MS patients with a history of clotting problems like DVT before treatments to look for this syndrome

i really can only estimate it. It is only recently that i have seen any thromboses, much to my great upset. If I exclude the aggressive treatment of hypoplasias, I would see it at about 3but that incidence was clustered and may be a statistical chance occurence. But i was using 1181-20 mm balloons at that time so I am anxious to see if my new strategy of ballooning to precise diameter of the vein will reduce that incidence. was clustered . But it seems to be about

[Perkele]

Hi Dr.Sclafani,

Could you give your opinion about my vein (deep cerebral?). These pictures are from my brain MRI and these pics represent the deep cerebral veins, if I'm correct.

I think I see clear stenosis there but your opinion would be highly valued.

To see all of the images click the picture.



Thank you so much,
Perkele

[ozarkcanoer]

Dr Sclafani.... Sorry, I meant Dr Haskal performed both procedures not you.

I saw my neuro today, and he ordered an intracranial MRV for me because my left stent is completely occluded with scar tissue. When I asked him why, he said that this occlusion/scarring could cause damage higher up in the brain. This is quite scary to me. Do you also feel this could be a problem with stents high up in the jugulars : scarring, full occlusion and damage of some sort to the brain itself (aside from reflux) ?

ozarkcanoer

[MaggieMae]

Dr. Sclafani: "i am a bit more concerned about the hypercoagulability of the antiphospholipid syndrome (Hughes sydnrome) which can mimic MS to some degree.
i am thinking to get a hematology consult on MS patients with a history of clotting problems like DVT before treatments to look for this syndrome"


Dr. Sclafani,

My husband is scheduled to have the procedure with you at the end of this month. I had talked to my husband's PCP regarding testing for Hughes Syndrome for my husband since his niece has it. His PCP said it does not run in families. That was the end of the conversation. My husband also has two sisters with MS (one is mother of niece with Hughes). None have had any blood clotting issues in the past (except niece).