Second opinion

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

Second opinion

Postby mrhodes40 » Sat Jan 23, 2010 12:36 pm

http://www.thisisms.com/ftopic-9541-0.html

In another thread Prof8 detailed a visit to a neural radiologist and a positive outcome from that conversation. See that thread above.

I consulted an interventional neuroradiologist this week as well. I have not been on the board much because I'm working now, so for those who don't know me I was the second person treated at Stanford and I have bilateral jugular stents. You can read my regimens entry by clicking the link at the bottom of this post if you want to know the whole story. I did have accessory nerve damage which required treatment that was caused by my stent surgery.

My visit with the neuroradiologist was just as positive as Prof8's was.

I want to especially make these points:

With regards to whether or not the carotids can be harmed by my stent, which in the case of the right jugular is a 12 mm stent (one half-inch), the answer is no.

The Dr. seemed puzzled that I thought the stent could harm the carotid. Of course this was something another Tims member was told by a vascular Dr. they consulted. He asked me have you held your stent? I said no he left the room and brought me one. It was as soft as a piece of lace and could be moved, twisted, flexed anyway at all and it returned to its original shape. The slightest press on the side of this stent and it readily gave.

The doctor said to me "you see how soft that is-- the carotid is very strong and has a very thick wall as the pulse moves down the carotid that stent will just move out of the way. If I had put a stent in that area of your neck I would have chosen the exact same stent."

I said well how did they get accessory nerve damage then? He replied "it had to of been when they put the balloon into the area to try open it up." He also assured me that this stent living in my neck from here on is not going to harm the accessory nerve any further. He seemed familiar with the accessory nerve syndrome because he said to me "you doing your shoulder exercises?" As he flexed his shoulders at the same time. When I nodded he said when those muscles are back in alignment and all the inflammation has gone down, I would expect that that syndrome would resolve completely. It takes time". I did have an EMG by a physiatrist and the nerve is regrowing-I knew that already. But what the physiatrist didn't know was how much pressure is going to be on the nerve long term from the stent. The answer is not much, if any.

It's worth noting that carotid endarterectomy is a fairly common procedure in a known side effect is accessory nerve damage. It may be that he has seen this before.

He also commented that if my stents should plug up, he would be able to go in and do something to open it back up again. He also would be willing to do my follow-up this spring.

It was very clear, abundantly clear, that nothing he heard from me sounded in any way questionable to him as far as procedure and stent placement. He does want me to get my venograms and he would like to see the stenosis befor the stents were placed as well as the pressure readings from the operating room. When he sees this, he will be able to make a full second opinion. But the preliminary visit left me with no feeling that he had any concerns with regards to the fact that stents had been placed in my jugular veins. In fact, it seemed that what I was talking about was fairly ordinary to him.

He did have some concerns regarding whether or not such a procedure would actually help MS. He was clear that with only one study on treatment this is fairly preliminary with regards to that question. however, while he is not wanting me to let his name out to others for treatment, he is looking at this very seriously from the standpoint of whether or not to offer this.

I got the feeling that the real issue is whether or not insurance companies feel there is justifiable reason to repair these stenoses and cover the surgery. He offered that it is thought that if the jugulars are blocked the blood will simply re route through the other veins and that this should not be a problem. He pointed out that the work that says it is a problem is Zamboni's, but he reminded me that we do not know that much about the venous system so it is important that we be open minded about what we do not know there. For himself, the issue was not one of "safety" it was one of "efficacy".

He shook my hand several times thanking me for bringing this to his attention. He and his partners he said are very interested in this new paradigm; they have had a meeting on it already. I had sent him a considerable amount of literature before our visit and he requested several specific papers if I had them. Naturally I was able to accommodate.

I would like to suggest that others who are looking for care might seek the advice of a local interventional neuroradiologist. At least one can have a conversation with someone who is familiar with stents.

BTW, this doc said he has not be flooded with requests for care...So if you have an interventional neuroradiologist nearby who takes clots out of stroke victims, give the office a call....you might be surprised at how ordinary this all sounds to him........... 8)
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby cheerleader » Sat Jan 23, 2010 12:49 pm

Thanks, Marie..once again, you are a pioneer! I'm copying this info over on the FB page.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby vendredi5h » Sat Jan 23, 2010 1:18 pm

That was a very interesting read. Thanks for that Marie.

Did you talk about the long term "consequence" or no-consequence of stenting? Could it stays there decades without problem?

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Postby ozarkcanoer » Sat Jan 23, 2010 1:21 pm

Marie,

I have an appointment with an interventional neuroradiologist on Feb 8. Last week his nurse said he would order an MRV for me and use Dr Haacke's protocol if he could. I hope my guy is as upbeat and positive about this as your guy is !! I have sent his nurse just tons of material on CCSVI research so he should be up to date when I see him. I have also been in contact with Dr Haacke about this and hope that my neuroradiologist will talk with Dr Haacke.

My greatest fear is that the imaging will show no problems with my veins. I guess that is the greatest fear all of us here have with CCSVI : If the scans show no venous problems then that means CCSVI is false.

Thanks for sharing your story. I gives me more confidence.

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Postby JoyIsMyStrength » Sat Jan 23, 2010 1:24 pm

Very helpful post! Thanks! I love your description of the stent itself and how flexible it is. When I think of "metal stent" a scary picture comes to mind but you have demystified it for me and I thank you for that.

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Postby cheerleader » Sat Jan 23, 2010 1:38 pm

ozarkcanoer wrote:
My greatest fear is that the imaging will show no problems with my veins. I guess that is the greatest fear all of us here have with CCSVI : If the scans show no venous problems then that means CCSVI is false.


Actually, there are some CDMS patients showing no venous involvement, but that doesn't nullify the reality of all of the patients that do have CCSVI. I hope you find your own personal answers, Jill..but this is not an all or nothing proposition. MS is a diagnosis of exclusion...there is still much to learn.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sat Jan 23, 2010 1:38 pm

"metal stent" a scary picture


Yeah I know!! it has changed me COMPLETELY to hold this in my hand. NOTE there are other stents, this was MY stent type.

I would encourage anyone considering this surgery to be sure and hold the stent, it makes a huge difference mentally. Calling it "hardware" is a real misnomer. Ask the hard questions. I was person #2. I didn't even know if I'd have a stenosis, it was almost shocking to suddenly be going in for repair, I didn't even know what question to ask--let alone make sure I held a stent so I would know what it was like. My mental lanscape it totally different about this now.

I do not know what long term effects he might offer. In a 20 minute visit what I got is what I told you. Visit 2 may reveal more. Prof8's neuroradiologist said patency would be 90-95% (see that thread, link above). Overall the important thing is that this was not seen as "revolutionary" at all from a safety standpoint, but the big deal was will it help...........

:? Cheer I was gonna do note---but you can repost my thing instead. :D
Last edited by mrhodes40 on Sat Jan 23, 2010 1:46 pm, edited 1 time in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby prof8 » Sat Jan 23, 2010 1:46 pm

Hi Marie--that is great positive news and a very informative post. It sounds like he expressed many of the same things my neuroradiologist said! This is a good sign that the neuroradiologists and interventional radiologists view this procedure as relatively very safe and stenting/angioplasty a familiar and standard treatment. It sure helps us put the alarmist warnings of the neurologists in perspective, doesn't it?
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Postby cah » Sat Jan 23, 2010 1:56 pm

You can see very well what Marie described about the flexibility and softness of a stent in this Video about Erika's procedure (the reporter hold it in his hands for you :wink: ) :

http://www.youtube.com/watch?v=EehnJDM5k_E

Starting at about 4:30. (It's polish, but you don't need the voice - the pictures are telling!)

And what I've come about reading studies about stents (mostly arterial), the material and design of the stents has improved considerably in recent years. So if you look at a study of the outcome and risk of stenting, you really have to look at the time the study was made. Really makes a difference!

Marie, I'm very happy for you. Best thing would be if there were no desease at all. Second best thing would be if all doctors were like yours or prof8's.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby ozarkcanoer » Sat Jan 23, 2010 2:00 pm

Sorry, cheer, I mean that it will be a huge disappointment for me :oops: . I didn't mean to say that CCSVI will be false. I am still counting on Buffalo.

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Re: Second opinion

Postby AlmostClever » Sat Jan 23, 2010 3:02 pm

mrhodes40 wrote:I got the feeling that the real issue is whether or not insurance companies feel there is justifiable reason to repair these stenoses and cover the surgery.


Do the insurance companies help fund any CCSVI research? It seems to me it would be in their best interest or am I wrong?

If the Buffalo results come out positively for CCSVI, maybe the insurance companies should be approached. Do you think they are even aware of these developments?
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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great report

Postby Dovechick » Sat Jan 23, 2010 3:24 pm

Hi Marie, you have posted a full and enlightening report as is your habit. I know that quite a few people have been worried about the stents and this should initially reassure them. Undergoing this procedure or not boils down in the end to how much risk you are prepared to take, and whether no action is safer for you than this route. For some people, clearly there are too many questions for it to be worthwhile, but for others the risks are worthwhile.
Your report has explained those risks in terms that will make it easier for those following you to understand what they are letting themselves in for.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby mrhodes40 » Sat Jan 23, 2010 3:50 pm

Thanks for the responses; it was an interesting visit to be sure.

I realize looking at it that I never mentioned that Radek had a stent migration in my post. Surgery is not without risks and I do not want to leave an impression of "NO risk". there are still risks and everyone needs to ask the questions of their own doctor.

The place I am in is a little different in that I went to this guy already with this done and needing a follow up and consult---Prof8 is looking for care

I am just finding it really interesting that Prof8 and I both got such similar feedback from our visits; had I been the only one to hear such things you could speculate it doesn't apply to people who don't have stents already...as if he might be comforting me but would tell someone new to forget it...but as it is with both of us hearing this comforting message it is interesting.

I hope some others see an interventional neuro-radiologist and can post what they are told about this.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby vahid » Sat Jan 23, 2010 5:05 pm

I did my ccsvi treatment on Jan 8 , I did that by just going to a vascular surgeon and taking the zamboni paper with me, anyway after having the Dopple and finding that everything was normal he wanted to do a venogram.
by doing venogram he found the left internal azygos vein was blocked, he open the vein by going through angioplasty, I haven't felt much difference since the procedure, except the fact that I have a little bit more endurance, However I have had MS for30 years so I thing if anything going to happen it might take a long time before I see major improvement.
Anyway the reason I am telling this is if you go the vascular surgeon close to you and take the zamboni paper with you, the doctor might do the same thing however you must be aware of this fact that as far as insurance company concern multiple sclerosis has nothing with blockage in the veins so first of all you must have a good reason to even see a vasculr surgeon. a reason like having a headche or something like that, a reason that the doctor wants to even see you otherwise the insurance co. wouldn't like to even pay him for the procedure
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Postby MrSuccess » Sat Jan 23, 2010 5:17 pm

nice report . Glad to see you post again. Always top notch information.


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