How do you know when you have Re-stenosed - i think i have

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

How do you know when you have Re-stenosed - i think i have

Postby adamt » Mon Aug 30, 2010 9:17 am

Im worried i have Re-Stenosed, just two weeks after balloon angio of both IJVs as they enter the chest

I only saw three improvements, which i noticed 2 days post procedure:
1) warm fingers and feet + normal colouring
2) no stiffness/spasm when first getting up /standing
3) better balance - walking straighter, not losing balance

But ive noticed over the last 3-4 days that:
1) my fingers and feet are colder, and slightly red ish on the toes
2) i am slightly stiff again when first standing and have to stretch legs before walking
3) balance is ok but i do sometimes lose balance now

- i also have May Thurner syndrome which hasnt been treated yet.


I read from others that there are good and bad days, but the last 2-3 days have been a bit worse (not as bad as before op)

I think i must have restenosed, but is there any way besides doppler/testing to know if i have?

do people get a few worse days and still return to good days - when you see the improvements again ?

thanks
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Postby adamt » Tue Aug 31, 2010 10:13 am

any opinions...
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Postby whyRwehere » Tue Aug 31, 2010 11:36 am

Sorry to hear that adam :(
Have you finished the anticoagulants?
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Can you have a Doppler Scan ?

Postby MarkW » Tue Aug 31, 2010 1:32 pm

Hello Adamt,
Re-stenosed IJV are detectable with a Doppler scan, as you say. Can you have one locally ? Reading symptoms is very difficult so no comments from me. Hopefully, you can get a Doppler scan locally for 200 dollars/ euros/ pounds.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby lucky125 » Tue Aug 31, 2010 1:50 pm

It is so frustrating to play the guessing game with yourself. I know. I've been there, too.

I enjoyed improved balance and walking for about 2 weeks after my procedure. Then they both got worse.

My other improvements including warmer fingers and toes and less fatigue stayed around, so I questioned whether I had restenosed.

Well, it turns out that I most likely did begin restenosing 2 weeks after my procedure. I was told that by the doctor who did my SECOND procedure 1 month ago.

I had significantly restenosed in both IJVs. He ballooned them more aggressively than the first doc. I am doing phenomenally well!

Restenosis happens. I didn't trust my instincts the first time, but I also did n't want to believe that it was happening. It did.

Hopefully you are in a position to be retreated. I am so grateful that I had the opportunity. Now I just hope it lasts!

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby adamt » Wed Sep 01, 2010 9:11 am

Why - i was only given 75mg Aspirin and will continue to take for 6 months

MarkW - As im in the UK, the doctors dont know what CCSVI is, besides a clinic in Scotland who charge £500 just for a doppler
I have an appointment in Belgium in December for treatment/testing, so will have to wait till then


Lucky125 - thats great you were treated again, how long did you have to wait.. was it the same dr/hospital?

i have an appointment with a new radiologist in Belgium in December, so have 3 months to wait :s
but at least this dr will treat the may thurners at the same time as ballooning the jugulars

All the best, and hopefully you wont restenose again
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Postby adamt » Thu Sep 02, 2010 11:21 am

Any other opinions..
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Postby esta » Fri Sep 03, 2010 10:04 am

hi adamt

Dr Simka in katowice, poland , noticed my swollem ankles and checked my iliac vein during my 2nd procedure. i think restenosing isn't uncommon, and waiting a few months is the norm. your wise to get on a list.
who did your first procedure? i guess i'm questioning why belgum.
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Postby newlywed4ever » Fri Sep 03, 2010 7:19 pm

adamt, I am also haunted with "have I restenosed"? (ok, "haunted" is a bit harsh). I'll have a couple of days where I don't think the balance is as good, foot drop feels heavier, etc. Yet, my energy level is great :? And then I'll have a really good day(s). My 3 mo check is not until Nov so I will just bide my time. In the meantime, I'm journaling. My best to you.
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Postby Cece » Fri Sep 03, 2010 7:38 pm

The docs are looking for patients who have improvements that then lose the improvements as possible cases of restenosis. You seem to fit the description, even with some improvements remaining. I'd check with your doc....
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Postby newlywed4ever » Fri Sep 03, 2010 7:45 pm

cece - I believe I've read somewhere that Dr S in Albany insists on waiting the 3 mos because people present with no stenosis....?
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Postby Cece » Fri Sep 03, 2010 8:21 pm

newlywed4ever wrote:cece - I believe I've read somewhere that Dr S in Albany insists on waiting the 3 mos because people present with no stenosis....?

yeah, I disagree with him on that....

(With no anticoagulants after ballooning, and a policy of not seeing you for three months if you restenose, what happens if you get a clot? The sooner a clot is treated, the better the outcome, right? So the later it is treated, the worse the outcome? Clotting is one of the complications of the procedure that we are seeing, even after angio, and to my surprise even while on blood thinners. There's been a report or two of that, most recently in pklittle's sticky of folks with bad/no results.)

I am not saying any of this necessarily applies to adamt!

Dr. Simka has suggested that the initial restoration of blood flow can 'shock' the brain so that it is in a bit of heightened state and this causes some of the immediate first day improvements that do not last, because the brain adjusts and recovers from the shock. Depending on how quickly the improvements fade, this could be a possibility.
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Postby BadCopy » Sat Sep 04, 2010 5:18 pm

I just had angio in late August and Siskin DID send ME home with a script for blood thinners. And I have never heard from HIM that he would not consider seeing a patient prior to 3 months post if there was a potential problem.

PS-Even though there are several people on here that are VERY well versed in CCSVI I would not be speaking for the doctors performing unless it went from his lips to your ear AS HIS/HER PATIENT
Last edited by BadCopy on Sun Sep 05, 2010 8:39 pm, edited 1 time in total.
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Postby Cece » Sat Sep 04, 2010 7:16 pm

BadCopy wrote:I just had angio in late August and Siskin DOES send you home with a script for blood thinners if you had angio.

I'd read this but I don't think it's an across the board policy change. I had emailed him about a few things and today I received an email back (from his fingertips to my slightly damaged optic nerve cells :) ) saying that he prescribes 3 months of aspirin after angio. Plavix for six months after stents. He also said that as time has passed and their experience has grown, they have seen some people come back with clotting issues and are taking steps to prevent that. Not sure what steps those would be...maybe he can identify which patients would be more likely to clot and prescribe blood thinners selectively to those patients? This is just a guess. I think Dr. Siskin is an upstanding, excellent doctor who is making the choices he thinks are best for his patients. But it is hard seeing the also excellent, also upstanding next-doctor-over making different choices. It will be easier once everything is better studied and standardized.
And I have never heard from HIM that he would not consider seeing a patient prior to 3 months post if there was a potential problem.

He said this at the symposium, about patients thinking they'd restenosed soon after procedure but hadn't, so he liked to wait three months to see if they get the gradual improvement course. I imagine if he was able to ascertain that a serious problem (like a thrombus?) had occurred, he'd get the patient in right away, but how can he tell? Especially if a thrombus has the same symptoms as restenosis in general. But clotting over can mean the vein gets lost.

Sorry adamt, back to your thread now.... :)
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Postby Brainteaser » Sat Sep 04, 2010 8:30 pm

This is just my opinion, following treatments in Poland and Melbourne, but CCSVI has a long way to go in terms of developing procedures to keep the veins open where there will be a natural tendency to revert to the established pathways. Angioplasty is especially prone to 'reversion', even after several treatments but stenting is also problematic, given that this creates redfined pathways which for a variety of reasons may not last or is suboptimal. I personally don't have much faith in sham studies and the like with one-off events on patients to either prove or disprove the theory. I'm comfortable in my own mind that CCSVI works but the body is so complex and we are all so different that it's not a matter of 'one size fits all'. Each patient needs a concentrated and individual CCSVI treatment program tailored to their needs. Also, treatment may need to be done many times before the body gets the message and the venous system conforms to the desired changes. So we shouldn't get too discouraged that the positive effects of CCSVI treatments wear off after a short time, but rather, encouraged that it does work (to some degree) but needs followup.

Prof Thomson in Melbourne basically echoed some of these thoughts of mine regarding repeat angioplasty being required to retrain the veins. In fact, he raised the case of a cancer patient with a similar venous issue, where repeat treatment was necessary many, many times.

Phil

PS Happy Fathers' Day - Let's hope our kids might be spared from some of this.
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