Restenosis or SUPER Exacerbation or???--Please READ

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

Restenosis or SUPER Exacerbation or???--Please READ

Postby Kate_PghPA » Sun Aug 21, 2011 2:36 pm

I have no pride. I am SO scared and indecisive!!

was angio'd in Dec 2010, local Vas Surg...did pretty well--several improvements until 08 -18-11 new numbness that within days rendered me ambulatory ONLY with Walker--previously I used NO Ambulatory APPLIANCES!

Hospitalized...MRI showed New 'Lesion' on spine...is this an unrelated to AngioPlasty FlareUP...? or part of MS ?
Dear GOD, I was SO Hopeful!!

Dear tims Readers Please give any feedback...this is my darkest moment--TRULY I am at a loss...very few ppl in my 'REAL world' even accept ccsvi,etc.

Am I feeling desperate? beyond words...

thank you, love, kate
Venoplasty 12/26/10 Vas.Surg/ Pgh,PA Angio'd Both IJV

2/9/11 F/U Transcranial Doppler: flowing well
8/15/11 Hosp. Exac. "MS" 1st Spinal lesions EVER seen/ MRI
9/7/11 F/U T. Doppler: flowing well
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Postby jimmylegs » Sun Aug 21, 2011 4:48 pm

so sorry to hear kate :(
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my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby Cece » Sun Aug 21, 2011 5:08 pm

Hugs to you, Kate, and restful healing thoughts....
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Postby HappyPoet » Sun Aug 21, 2011 6:30 pm

Dear Kate,

I'm so sorry you're having this exacerbation, you poor thing. Coming to TIMS for support was a very good idea. I'll help you as much as I can. :)

Positives to remember:

1. Eight months of improvement is EXCELLENT.

2. You are NOT alone.

3. You WILL have recovery.

Having had eight months of improvement is really terrific and bodes very well for your CCSVI future. I've noticed that many pwMS who had the procedure had improvements that lasted for only a couple of months -- you are one of the luckier ones. Please believe that you're not alone -- everyone who reads this post will be pulling for you, some with words of wisdom and some with private prayers, all of which means that the power of positive thinking will be helping you. Keep telling yourself that the worst has passed, and that recovery will come.

Regarding restenosis, did you have an ultrasound to check your IJVs for flow and occlusions? Any sonographer can perform this US; Dr. Zamboni's US protocol used for diagnosing CCSVI does NOT need to be followed when just checking for flow and occlusions.

The ideal first-year schedule for having post-procedure USs is at one month, three months, six months, nine months, and one year. Ask your IR, primary, or neuro to write a script for an "US of internal jugular veins--bilateral," and schedule an appointment at a local US facility ASAP.

An US can detect flow, thrombosis (clotting), and intimal hyperplasia (scar tissue). Make sure your IR receives a copy of the US report, and make an appointment with your IR to review the US and MRI reports (bring your copies of the reports to the appointment).

Don't overly fret about possibly needing a second venoplasty -- some IRs believe it will take two venoplasties to completely finish the job of opening IJVs, especially for valvular stenoses which can tend to have some tissue pop out from the vein wall which can cause thrombosis due to turbulent flow.

Regarding a relapse, if the US shows good flow, then you might be having an 'MS' relapse rather than CCSVI restenosis. Did you receive steroids which are usually standard protocol for active inflammation? Keep in mind that it can take some time for the inflammation to end and for the lesion to heal.

Any questions?

~Pam
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thank you all!

Postby Kate_PghPA » Sun Aug 21, 2011 7:52 pm

thank you for all your kind words and wishes--

I would love to get to Dr Scalafani asap== my generous sis in Jersey would
need more convincing to take me...she IS Skeptical

thank you so very much, kate
Venoplasty 12/26/10 Vas.Surg/ Pgh,PA Angio'd Both IJV

2/9/11 F/U Transcranial Doppler: flowing well
8/15/11 Hosp. Exac. "MS" 1st Spinal lesions EVER seen/ MRI
9/7/11 F/U T. Doppler: flowing well
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Postby HappyPoet » Mon Aug 22, 2011 6:50 am

I've received some PMs asking why an US is important, so in case there are others in a similar situation, here is my reply...

An US will be helpful because the earlier problems such as thrombosis and intimal hyperplasia are found, the better the chances are for a good outcome. The longer clotting and intimal hyperplasia go undetected, the greater the chances are that:

1) A clot could harden or scar tissue could form either of which could completely block flow and prevent a catheter from entering an IJV for more ballooning, BUT if found in time, a rendezvous procedure might work which is when a second catheter, usually started in the arm, is threaded down toward the IJV stenosis -- the first catheter, usually started in the groin, is threaded up toward the IJV stenosis.

2) A clot could dislodge entirely, or just a piece of clot could break off, either of which could travel through the heart to a lung (pulmonary embolism) which could be an emergency, BUT if found in time, an IR might be able to remove the clot with suction.

So, there are at least two vitally important reasons to have an US done ASAP when improvements start fading. I hope this post is helpful.

Best of luck to everyone in this situation.
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Postby Cece » Mon Aug 22, 2011 7:23 am

Clots can also be asymptomatic. I have also heard of at least one patient who had no improvement, so no loss of improvements to warn them, who ended up with a clot. The doctors do not yet have consensus on what regimen is best for anticoagulation to prevent clots nor do we have exact numbers on what percentage of CCSVI treated patients end up with clot or other complications.

But, for Kate personally, we are not in the time window that HappyPoet is describing; her procedure was half a year ago.

Please keep us posted, Kate. The neurologists do everything they can for a patient in an exacerabation but their tool box is very different than the IRs' tool box.

:(
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Postby HappyPoet » Mon Aug 22, 2011 7:38 am

Cece wrote:But, for Kate personally, we are not in the time window that HappyPoet is describing; her procedure was half a year ago.

Cece, thanks for contributing! :)

My understanding is that when intimal hyperplasia forms unevenly, turbulence is created which can then lead to clot formation -- if correct, then Kate is within the time window of intimal hyperplasia forming and concern is warranted for her to have an US as soon as possible. This is similar to the turbulence created that I mentioned above when part of a valve pops back out and disrupts flow and can lead to thrombosis. Yes? No?
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Postby dania » Mon Aug 22, 2011 7:53 am

Kate, get an ultrasound done. From what you wrote I would not be surprised if you have some blockages. What you are describing happened to me too. Had improvements then got worse and my blockages are now more severe than ever.
Good luck.
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Postby Cece » Mon Aug 22, 2011 8:06 am

HappyPoet wrote:My understanding is that when intimal hyperplasia forms unevenly, turbulence is created which can then lead to clot formation -- if correct, then Kate is within the time window of intimal hyperplasia forming and concern is warranted for her to have an US as soon as possible. This is similar to the turbulence created that I mentioned above when part of a valve pops back out and disrupts flow and can lead to thrombosis. Yes? No?

Intimal hyperplasia can happen between 3 - 12 months post-procedure. Clots can happen right away or at any time. For myself, I had that situation you describe (residual valve material that reformed itself into a 70% blockage) but no clot.

The turbulence that can contribute to clot formation is something that has been going on in our veins for as long as we've had CCSVI stenoses. The difference is that, post-procedure, we also have damaged vein walls, which give a clot somewhere to stick. The vein walls heal. Intimal hyperplasia smooth muscle growth does not provide a good sticking place for clots so at that point I think we've gone back to our baseline risk for thrombosis, which is higher in people with CCSVI because of the stenoses and also possibly we have more coaguable blood, as seen in Dr. Dake's summer of '09 patients.

I would hope that Kate's IR would check for all of this. There might be a better explanation if she was underdiagnosed or undertreated in the first place. Although the fact that her MS just got worse than it has ever been might mean that her CCSVI is also worse than it had been, perhaps due to a complication of the procedure.

This was very long. I agree with what dania just wrote.
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Postby HappyPoet » Mon Aug 22, 2011 9:21 am

Kate, I forgot to say that you being able to see DrS would be fantastic for many reasons! If, as Cece smartly suggested, you were undertreated in your first procedure, DrS's use of IVUS could find the missed stenoses which could have contributed to your exacerbation.

Cece, great explanation, thanks!

Dania, I also agree with your post which is clear, concise, and commanding. :)
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Postby bruce123 » Mon Aug 22, 2011 11:39 am

Kate, please know that many people have read your post and are praying for you.

If you are worried about clotting and it is not easy to get another ultrasound, may I suggest getting your doctor to order a simple d-dimmer blood test. This will tell you if you have clotting in your system. It won't tell you where or how sever but if it is negative then you can stop worrying about the possibility.

Bruce.
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Postby blossom » Mon Aug 22, 2011 9:11 pm

hi kate, yes, what the others are telling you to get your ultrasound asap!! is the best thing so you can rule in or rule out the possible threat.

you say you have a new lesion on your spine right? have you ever gone to an upper cervicle chiro.? this might be something you might want to check out. i understand there are some good ones down your way. but that's your call.

believe me i understand and my thoughts and prayers go out to you. i feel like i'm kinda sitting on the edge of the unknown kinda holding my breath type thing. so, get your ultrasound and go from there.

please keep us informed.
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Postby HappyPoet » Tue Aug 23, 2011 4:06 am

bruce123 wrote:Kate, please know that many people have read your post and are praying for you.

If you are worried about clotting and it is not easy to get another ultrasound, may I suggest getting your doctor to order a simple d-dimmer blood test. This will tell you if you have clotting in your system. It won't tell you where or how sever but if it is negative then you can stop worrying about the possibility.

Bruce.

Bruce, brilliant!

I haven't read about the d-dimmer blood test since the Pioneer Days almost 2.5 yrs ago when Dr. Dake required his patients to have the test done--I toitally forgot all about it.

If I have another procedure, I'm going to request this test ("I will not forget, I will not forget, I will not forget.") Now, in addition to my own portable US machine, I wish I had my own blood laboratory in my house. :D
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Postby pklittle » Tue Aug 23, 2011 7:39 am

Kate, I am sorry to read of your situation. Definitely have an US to check for blockage. It is my understanding that US does not distinguish between clot or scarring but at least you will know if there is blockage and you can make a decision how to proceed based on that.
We must remember also that treating CCSVI does not guarantee that no further relapse or progression will occur.
Good luck to you, and keep us posted.
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