Time to see results

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

Time to see results

Postby duckfan » Sun Sep 25, 2011 1:48 pm

Hi,
My husband had angioplasty at the Vascular Access Center two weeks ago. He initially had some increased energy and some relief from foot drop. Now he's back to where he started before the treatment.
Anyone notice results weeks or months after the angioplasty?
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Re: Time to see results

Postby Rosegirl » Sun Sep 25, 2011 3:05 pm

Some doctors say to wait six months to see results. Some patients say that they have small setbacks, but then the improvements continue. If his symptoms get worse than before the procedure, I would call his doctor immediately because there might be restenosis or thrombosis.
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Re: Time to see results

Postby Cece » Sun Sep 25, 2011 3:20 pm

I had a few early improvements that faded by six weeks post-procedure but significant other improvements remained and I even had new improvements that showed up between 3-4 months. However at five months post-procedure, I had a second procedure which showed that the smaller of my two veins had restenosed.

An ultrasound could rule out clotting or restenosis, in your husband's case. I would check with the doctor.
Last edited by Cece on Sun Sep 25, 2011 4:19 pm, edited 1 time in total.
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Re: Time to see results

Postby CD » Sun Sep 25, 2011 3:48 pm

Hi duckfan,
Has your husband been on any post-procedure medication? I would call the treating doctor and let him know the situation. He might have a recommendation for your husband. Good luck.
Where there is a will, there is a way. "HOPE"

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Re: Time to see results

Postby duckfan » Sun Sep 25, 2011 6:17 pm

Thanks for the information. He isn't any worse, I didn't mean to infer that, just no improvements. He's on Plavix and a baby aspirin.
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Re: Time to see results

Postby Cece » Sun Sep 25, 2011 6:50 pm

No improvements at all might mean he's a nonresponder. Maybe CCSVI was not a significant part of his MS or maybe there is damage that needs healing (and might be more able to heal if the blood flow is better now).

But I didn't read what you said as that there were no improvements. He had two improvements (energy and foot drop), then lost those improvements.

When improvements are lost, there is potential for that to be restenosis. Restenosis can be benign or it can be dangerous to the survival of the vein. An ultrasound is an easy way to tell, and it does not have to be a CCSVI IR to do the ultrasound.

Also, welcome to TiMS, sorry for all the concern right off the bat, and what does it mean to be a duckfan? I think of hunting ducks but then my dad is a hunter.
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Re: Time to see results

Postby duckfan » Sun Sep 25, 2011 7:38 pm

Nope, Duckfan means a fan of the University of Oregon Ducks. Football right now.

We had to travel to Seattle to have the procedure done and didn't tell his Neurologist that we were doing that. My husband's Neuro isn't very supportive.

We'll watch my husband and see what happens. I'm so afraid that the angioplasty will worsen his symptoms. So much fear when a loved one has MS or any serious illness for that matter.

I'm questioning our judgement in having the procedure done but we had to try.
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Re: Time to see results

Postby civickiller » Mon Sep 26, 2011 12:24 am

i would recommend seeing a Upper Cervical Care Dr. to see if you could benefit from this type of care, alot of people have seen improvements.

i personally saw more energy, lost my heat sensitivity, more strength(helped with walking, better balance), lost my lower back pain
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Results of what ?????

Postby MarkW » Tue Sep 27, 2011 2:32 am

Hello duckfan,
Answering your question logically is not possible. We need to know;
- what investigations were performed? (venogram? IVUS? veins checked etc).
- what was the diagnosis?
- what treatment was performed?
- what was the aftercare regime?
I see no logical reason to report results before 3 months due to variations in MS.
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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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Re: Results of what ?????

Postby Cece » Tue Sep 27, 2011 5:37 am

MarkW wrote:I see no logical reason to report results before 3 months due to variations in MS.

Complications can arise at any time, especially in the early days after a procedure. Waiting until three months can mean it is too late to salvage a vein that has faced complications.

We are not performing a scientific study here at TiMS! Only sharing our experiences with others.

I don't know if people who have immediate improvements are the ones most likely to have gradual improvements as well. I would love to hear more stories from people who did not have immediate improvements but did have significant gradual improvements a few months later.
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Re: Time to see results

Postby Cece » Tue Sep 27, 2011 5:42 am

duckfan wrote:Nope, Duckfan means a fan of the University of Oregon Ducks. Football right now.

We had to travel to Seattle to have the procedure done and didn't tell his Neurologist that we were doing that. My husband's Neuro isn't very supportive.

We'll watch my husband and see what happens. I'm so afraid that the angioplasty will worsen his symptoms. So much fear when a loved one has MS or any serious illness for that matter.

I'm questioning our judgement in having the procedure done but we had to try.

Keep us posted how things go.
It would be much more rare if his neuro was supportive of CCSVI treatment! Mine definitely wasn't.
No need to borrow trouble, since nothing has worsened or changed from his baseline as of now.
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Results of what ??

Postby MarkW » Tue Sep 27, 2011 6:35 am

Hello Cece,
We mostly agree but 'sharing experiences' can mislead pwMS, unless they are all shared ie on the special reporting thread. None of know what was done in Seattle and duckfan should start by posting this.

MarkW wrote: I see no logical reason to report results before 3 months due to variations in MS.
Cece replied: Complications can arise at any time, especially in the early days after a procedure. Waiting until three months can mean it is too late to salvage a vein that has faced complications.
MarkW thinks: The patient must talk to the doctor who performed the procedure about complications. Trying to get a diagnosis on TiMS is unsafe.

Cece wrote: We are not performing a scientific study here at TiMS! Only sharing our experiences with others.
MarkW replies: people who post experiences are usually the extreme cases both good and bad. Learning from these results is not usually that helpful to the majority 'in the middle'.

I realise I take a logical pedantic approach but how can anyone on TiMS share experiences until we know "what was done in Seattle". ?? Hopefully duckfan will post this.

Sharing: where we went, equipment used, veins checked, diagnosis, treatment, etc etc is very helpful for people thinking about the CCSVI procedure.

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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Re: Time to see results

Postby duckfan » Tue Sep 27, 2011 8:06 am

I see your reasoning in reporting all the facts. I just didn't want to "bore" everyone with a lengthy report of his procedure.
1. MRV was done at a local hospital and a venogram was done at the time of the procedure.
2. Procedure was done at the Vascular Access Center in Seattle by Dr. Marlo Moya
3. Azygous V. Genu 70%
Azugous V. Vertical 70%
Left Jugular 80-90%
R. Jugular 70%
Brisk flow was restored by angioplasty. Plavix 75mg and ASA 81 mg was prescribed daily for 2 months.
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Re: Time to see results

Postby Cece » Tue Sep 27, 2011 9:55 am

Frankly I am never bored when the conversation is about CCSVI. :)
The patient must talk to the doctor who performed the procedure about complications. Trying to get a diagnosis on TiMS is unsafe.

Yes. Contact your doctor is always the first, best advice. Still it is good for people to know that the doctors are not all in agreement as to what to do about a complication. For example, in the latest case in Dr. Sclafani's thread, a major thrombus was discovered during a venogram procedure but was treated very conservatively with anticoagulants. There were other options, particularly manual removal, that would have been possible with a newly formed clot.

I find that there is a gray area between trusting one's own doctor and knowing that the procedure, and everything surrounding the procedure, is not yet standardized.
I see your reasoning in reporting all the facts. I just didn't want to "bore" everyone with a lengthy report of his procedure.
1. MRV was done at a local hospital and a venogram was done at the time of the procedure.
2. Procedure was done at the Vascular Access Center in Seattle by Dr. Marlo Moya
3. Azygous V. Genu 70%
Azugous V. Vertical 70%
Left Jugular 80-90%
R. Jugular 70%
Brisk flow was restored by angioplasty. Plavix 75mg and ASA 81 mg was prescribed daily for 2 months.

Those are high-grade stenoses.
I haven't seen the terms "azygous V. genu" or "azygous v. vertical" but am assuming that genu is the arch and vertical is the vertical portion of the azygous. It is unusual to hear of stenoses in the vertical portion of the azygous and that is where the debatable "candy-wrapper" stenosis has sometimes been seen. (Debatable because it may change appearances based on breathing and therefore not be a true stenosis.)
Plavix and aspirin are both antiplatelets, not true anticoagulants. There is little consensus on what type of anticoagulation is needed and no proof that that true anticoagulants do a better job than antiplatelets at preventing clotting in the jugulars and azygous.

Another important detail would be the size of balloons used on each vein.
It has also been suggested that patients with primary progressive MS have had less of a response to the procedure in terms of their MS symptoms getting better. I hope that doesn't turn out to be true.
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Re: Time to see results

Postby Rosegirl » Tue Sep 27, 2011 10:21 am

My results were remarkably similar to Duckfan's.

Both of my treatments referenced treatment of the arch (genu) of the azygous and separate treatment of its vertical section. My second procedure included treating blockages of the renal and iliac veins. No stents were used in either procedure.

Cece, you said that it is unusual to hear of stenoses in the vertical portion of the azygous. What is this comment based on? Does it imply that other doctors are not treating that section of the vein and patients should be sure to ask to have it evaluated?

For those who use this site as a main source of information about CCSVI, it is important to distinguish between perception and valid statistical knowledge that we take to our doctors to discuss treatment, particularly when we know more about CCSVI than the doctor does.
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