Negative reactions from friends & family re CCSVI

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

Negative reactions from friends & family re CCSVI

Postby heartsandskulls » Fri Nov 05, 2010 6:52 pm

I first heard about CCSVI when it hit the media due to hundreds of people emailing me links due to my "status" in my industry.

Now that I have publicly announced my appointment to get liberated, I've had to deal with those same people giving me grief for "taking crazy risks".

Even my own mother told me to "get a second opinion before letting some quack cut into my brain". It's as if she didn't even read what the procedure is. She tells me that "everyone says this is snake oil!", when she tore her rotator cuff and had to have her shoulder surgery, I didn't tell her to get a second opinion.

It's so frustrating to have people bitch at me constantly because I don't take any DMDs. I've had every stupid side effect and can't tolerate the injections and their side effects and I'm having 3-4 relapses a year that last 6+ weeks with each new relapse comes side effects that don't go away when the relapse is over. Second off, what is a second opinion supposed to prove when I've been treated at UCLA's MS clinic, Cedar Sinai's head of Neurology and Mount Sinai's MS clinic where they all confirm that I have MS. It was diagnosed via blood work, MRI as well as a lumbar puncture and the results reviewed by doctors at all 3 hospitals/clinics.

People have said that CCSVI is just a way for people to make a quick buck off of us. Considering that I don't have health insurance living internationally for several years left me without insurance, medical care outside of the US costs less than health insurance and then I became uninsurable when I was diagnosed with MS), the CCSVI procedure is the same cost as 2 months of medication for me, so I hardly see it as any different than pharmaceutical companies who charge more than most people make in a year for their products.

I've put on 20lbs from constantly being on steroids and I'm at my wits end with being flooded with information about every little thing that comes up in the media and then when I follow through with one of them, that seems to have a sound basis, I'm told I'm being an idiot. I just don't get what people expect me to do.

How do you all deal with the unwanted opinions from others regarding CCSVI? What can I show them to shut them up?

I wish there was some way to find out exactly how many people have had the procedure done and what their results were but I suppose without the proper studies being done, there will be no way to tell until then.

Sorry if this is more than a rant than anything. I suppose I am just getting down to nerves with less than a week before I get liberated.
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Postby Cece » Fri Nov 05, 2010 7:32 pm

Less than a week! Best wishes.

My thought is that even if other people would make different choices in our shoes, we are the ones in our own shoes.

With unwanted opinions, I might say: thank you for your concern, I do not want to talk about this, I understand that you would do things differently, I have already made this decision, I could use your support on this, do you think I would do this without researching it fully? :wink:

But please be thinking now about what you'll do for follow-up care or in the event of clotting....
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Postby cheerleader » Fri Nov 05, 2010 8:11 pm

Hi Hearts--
that's kind of ironic...they tell you about it, and then they worry. Sorry it's bothering you.

In hindsight, Jeff was really lucky...no one knew what he was doing, and he was completely at ease with his decision. There was no negative press, no scare tactics. Just his totally messed up veins and a doctor he trusted. I was freaking out, because it was all my fault....but he was great, and very confidant. He still feels that way almost 2 years later.

Maybe get a diagnosis first....look at the evidence, sleep on it, don't get treated right away. There's no rush. If you are not comfortable or do not feel ready, don't have angioplasty. Get a second opinion. Seriously.
that's my best advice, and I believe in this--but it scares me to see patients who don't feel confidant with the process get treated--

and if you're ready to go, and it's just those around you who aren't, send them to www.CCSVI.org CCSVI Alliance is the best place to go for research-based information. It's also where my Endothelial Health program, patient perspective stories, and doctor interviews are housed.
best to you--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby JCB » Fri Nov 05, 2010 8:48 pm

You can take my advice for what it's worth (not much).

I had a few people think I was crazy to have my plumbing checked, including my neurologist. CCSVI and the correlation of blocked venous systems is to strong to ignore IMO. It is also the only theory that makes sense to me.

I have had the procedure done, I'm not MS symptom free. I may always have a little giddy-up in my walk. As someone who has been diagnosed PPMS I have never really experienced a relapse. What goes with someone with PPMS is that there really aren't any drugs for options. I eat a very healthy diet and my progression, while slow was not slow enough for me. I felt like it was a no loose situation to get the procedure done.

I do feel like it is a personal choice at this point. I think there is much to learn about CCSVI and the best way to treat it. In order to learn, the doctor's need patients that are willing to undergo a minimally invasive procedure. The more procedures that are done and the more they learn from eachother the more we benefit. We will not benefit if procedures stop and research stops. I think the potential benefit out weighed the cost/risk for me.

The people that thought I was crazy before still think I'm crazy. I echo the above posts, do the research and make the best decision for you. I have a great wife and three great kids and we decided to go for it. I would do it again in a heart beat. The gains I have had may be minor but the "progressive" is going the opposite way now.

BTW I'm off steroids and haven't missed them since Liberation treatment.

Jim
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Postby CureIous » Fri Nov 05, 2010 11:20 pm

People get a lot of their info from the media and media type outlets, blogs, whatever. This virtually guarantees that the casual observer will have a very immature view of CCSVI, what it is, what it isn't, and unless they really dig in and get to the meat of the issue, which very few media pieces will (Well I googled CCSVI and read an article on it etc etc), you are virtually guaranteed to face some opposition.

My mind always wanders to the point that in a new paradigm, and especially with those say family, friends, who don't really get what MS is in the first place (other than what they may learn from watching you for instance), there's this tendency to try to put new information into a framework that's more "graspable".

Since so many media articles, heck even blogs and sites that have limited information will give this incomplete picture, in the presence of this lack of info, the mind wants to make up the rest.

So you will hear comments from the uninformed about "snake oil", certainly you will hear the word "cure", as in "well they are calling this a cure", or "it's not a cure, you are experimenting with your body", etc etc.

Totally understandable, and the one thing that matters, is that YOU are at peace with it, because like anything else, first impressions tend to be the strongest, and if some in your life "got the google" and didn't use it wisely and really dig in, then I guarantee you they will have some serious and well intended reservations.

The question is, how do YOU feel about it? What is YOUR knowledge base on it, how is YOUR comfort level with it? Because only YOU live in that body which is by your account, becoming extremely uncooperative.

Those of us who were treated faced some of the same things as you are facing now. It's both an exhilirating thought (of the possibilities), and a sobering time too, as well it should be. Be excited, but heed the warnings, every last one of them. Be prepared for anything including failure. That's the only way to go into this, eyes wide open and not deceiving yourself. Prepare for the possibility this may do absolutely nothing and cause you much grief. It has happened, and yes, then those in your life will say "I told you so", or words to that effect. That's a scarier thought to me I think than the lack of physical benefit, should that occur.

It all starts and ends with you, and there is nothing you can do if you have provided the info, links, all that, and people only go so far with it, you have no control over that whatsoever, but if you are at peace with yourself about it, then that is that and be done with it.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby heartsandskulls » Sat Nov 06, 2010 1:17 am

Personally I'm happy and excited to try something that isn't injecting a toxin into my body that will destroy my immune system. I've always been "sickly" my whole life and dealt with one thing after another.

I just find it ironic that the same people who bombard me with MS related news every time something hits the media are the same person freaking out at me when I want to try something that's "outside the norm".

My boyfriend laughs at me because of how much research I do into anything. If we watch a documentary on something, I'll then spend hours researching more into it. He's completely secure with my decision as well, as he's seen what I have to go through and has taken me to the ER in the middle of the night when I'm suddenly unable to walk when I felt it creeping up over a couple days. He's seen me on my good days and my bad and stands by my side and supports me.

The only things I don't know right now, or can't seem to find the answers for, are what the aftercare for the procedure is really like or how the procedure itself is really done.

I know they go in through the groin area and that you're awake for the procedure but what is the pain level like and how do they address it? Little questions like that I suppose are what make me more nervous. It's not like any other surgery where you can go to websites that explain it in detail or watch countless videos on youtube.

I'm excited and ready to go. I had been trying to get on lists when it first hit the media but then gave up when it didn't seem like a possibility until I saw that it was being done in Poland and India and happened to come across PI in the states because I didn't want to travel overseas.

I've lived internationally and I trust the health care systems of other countries and a lot of what I have experienced overseas has been better than in the states but at the same time, I didn't want to do something like this that may require follow up and have it be such a big ordeal if I needed to see a doctor about it.
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Postby dania » Sat Nov 06, 2010 6:55 am

I think every person who is considering having the procedure gets unsolicited advice or comments. I sure did. And because my improvements were short lived as my veins restenosed, I get "see it does not work". And I can not get them to grasp the idea that as long as the veins remain open we have improvements that stay with us. Would we tell cancer patients not to do treatment because it does not cure all of them? Some die. So is that snake oil? One friend, I finally had to tell her to stop telling me anything about what she read or heard about the procedure (all negative) as she was upsetting me. So now I just do not engage in that conversation. One friend told me how she handles people"s comments, She simply says "you might be right" and says nothing else. I now use this and it does tend to shut them up.

This came from a friend, when she went to her doctor.
Great News, just got back from my Opthamologist.And today is also my 3 month anniversary of the liberation procedure.20% improvement in both eyes and abnormal pupil dilation "flare" gone.He was awed...I don't which of us had a bigger grin ! ....He was so surprised ....All he could say is that this is HARD EVIDENCE ! S...ure hope he spreads the good news within the medical field
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News blackout, you decide, practical hints.

Postby MarkW » Sat Nov 06, 2010 7:39 am

My way of contolling the situation was not to tell friends and family until after the procedure. Then my message was it is my body and my money so I decide not anyone else. Also remind any doubters that you know more about this than they do. You are not starting from the same place but I recommend you do not say anything about changes until 3 months have past, then every 3 months give an update on progress.

You have decided to try this in the first 3-4000 group, so it is probably safe. However there is no 'where to look and how to treat manual'.
This means getting your doctor to check all the possible major veins for stenoses, webs etc so time consuming (see Sclafani paper for guidance). Talk with an expert in anti-coagulation before your procedure and get advice on what should be best for you. Discuss with surgeon/IR.

The actual procedure is just a little discomfort from a local before the catheter is inserted in the groin. I think I could feel the dye injections but no pain. Being shaved was a new experience for me and could have been done at home before the procedure. My best decision was to have a bladder catheter inserted, cos my procedure lasted 3 hours but that depends on your bladder capacity. I had a stiff back from lying still for 3 hours and a large non painful bruise around my groin.

If you have cold hands/feet get your boyfriend to check their temp/colour just before and after. It is the first indicator I have seen memtioned that something has happended but who knows what.

Best wishes,

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 Cece » Sat Nov 06, 2010 9:07 am

heartsandskulls wrote:The only things I don't know right now, or can't seem to find the answers for, are what the aftercare for the procedure is really like or how the procedure itself is really done.

Try this thread, starting with:
Perhaps it is not appropriate to write a reply, but now that i have been outed as a physician treating CCSVI, I thought I would read what is discussed and see whether anyone would want to hear from someone on the other side of the catheter.

http://www.thisisms.com/ftopicp-98253.html#98253

For pain, the veins have no nerve fibers inside them so the only things that will be felt is the initial needle for numbing the catheter entry spot and then the ballooning itself. Reports vary on that. Some found it painful, some did not.
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Postby burg » Sun Nov 07, 2010 1:58 pm

Just say;

"Thank you for bringing that to my attention".[b]

After you that answer to any comments they make, they will stop bothering you.
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Postby msjen » Wed Nov 10, 2010 8:03 pm

I have to say that reading all of these responses did help. I've had the surgery once already and restenosed and got the "I told you so" from my family -- I just don't talk to them about it anymore. I feel like I have done the research which they have not because they don't have a disease so don't need to worry about it (except that they did tell me about the procedure). I was scheduled for the surgery again at AZHI then got the call that under new ownership their process is changing. I felt comfortable with the doctor there, so I don't know what I'll do now - I do feel comfortable about my decision to move forward though, and unfortunately I've just not been able to share things with my family...
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what the procedure was like

Postby dunkempt » Wed Nov 10, 2010 8:31 pm

MarkW talked about the procedure well, but let me throw this is in: getting my wisdom teeth out was *longer, far more unpleasant, and much more and painful*.

Not being able to pee for a few hours afterwards was very uncomfortable and challenging. I would think about a catheter a second time. The shaving was kind of funny for me. I thought I had shaved everything and then some, but on the table I heard that it wasn't sufficient. Still have no idea what I missed.

Not that the procedure was fun - it was, um, scratchy and uncomfortable, and it ached around the insertion site, and there were a couple of stretches of half-a-minute or so when they were inflating the balloons that I WAS VERY GLAD DIDN'T LAST LONGER.

In my case I talked some with my physicians through the whole procedure - you're relaxed, but you're not out of it.

Something else which just struck me is this: in all the accounts I have read of people considering a 2nd procedure, I don't recall anyone reluctant to do it again because of the discomfort. I really have to try to recall the unpleasant parts: in retrospect they just don't seem significant.

It's not fun, but it's not a big deal. It's not wisdom teeth. It's not childbirth. And it's in a good cause, it really is.

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Postby Music » Wed Nov 10, 2010 8:58 pm

Heartsandskulls,

Everyone's discomfort experience is different. The only "pain" I had was from the 10 - 15 seconds of ballooning - otherwise NOTHING - NOWHERE.
Have heard others say they didn't have any discomfort. Ask for lots of sedation - you will be very relaxed.

Do not worry - all will be fine.
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Postby HFogerty » Wed Nov 10, 2010 9:12 pm

Heartsandskulls: If I had it to do again, I would do it 100 times over for the benefits I received. Its a no-brainer. They had to re-do my right jugular twice (75% stenosed) but what anyone would describe as "pain" was minimal. I am now on no medication for restless legs, I can think more clearly, I have no fatigue. In addition, my hands do not shake anymore. The benefits clearly outweight the risks. I was fortunate to not require any stents to date. Even if stents were required. I would have gladly taken the risk. But thats just me. :D
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Postby CureIous » Fri Nov 12, 2010 5:25 pm

Eager to find out how things went for you HeartsSkulls. Hope all went well, keep us updated!

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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