Some cautions to note

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

Some cautions to note

Postby mrhodes40 » Sat May 23, 2009 6:38 am

This is a post to make people aware of the finer details of the possible concerns to do with this type of procedure. This is NOT a non event like going to the dentist: it is real surgery with real lifelong consequences.

Stents are a metal mesh with a matrix on them that the blood vessel cells can grow onto and cover. These are used in areas where the blood vessel is compressed enough that blood flow is compromised; the metal mesh keeps the vein open so a normal amount of blood flow can go through it. These are commonly used with older people who have blood flow issues around their hearts or in their carotid arteries.

When the stent is originally placed, it is a completely foreign body. But while the metal mesh will always be there, it will be eventually covered with an endothelial lining that will make it seamless with the adjacent vessel from the blood's point of view. Until that happens, hopefully by about 2 months, you are at risk for clots to form at the location of the stent, which could block it or even allow a clot to go elsewhere and cause other serious problems. Therefore you are given Coumadin and Plavix to offset any clotting that may tend to occur at the stent site.

This brings me to an important detail for people to consider before deciding to do this procedure:

Coumadin and plavix which are given to prevent clots are blood thinners and they require care in taking them. You can't take alcohol with coumadin, and you need to restrict vitamin K containing foods. You will be given detailed patient instructions at the hospital that you need to follow closely regarding diet to make sure the coumadin works as expected. You need to be aware that you will need frequent blood tests and possibly several coumadin dosage changes until the coumadin dosing is exactly right for you.

Another issue is that if you should fall while on coumadin, because your blood is thin it presents a unique issue if you should hit your head; you may need to get a CAT scan and make sure that you do not have bleeding inside the brain, you'll need to talk to your primary if that happens. I mention this only because I fall often and hit my head pretty regularly: I know some of you may be like me.

You'll also need to wear a bracelet telling people that you use coumadin so if you are in an accident they are aware of this fact and can give you vitamin K and couteract the coumadin if this is deemed necessary to control bleeding.

Obviously anything that might result in some kind of accident is not a good idea while you're on coumadin. Some of us are gimpy enough that that might include everyday activity..you MUST be prepared to do whatever is necessary to prevent an accident while you are on the coumadin. I'll be using my rollator for safety.

Taking coumadin is medically involved, and you need to be aware this will happen after surgery.

You also must have the support of your own local physican who will need to be reponsible for doing coagulation testing every 2 weeks to make sure that the coumadin level is perfect: blood not too thin or to thick. This person will not only be responsible for follow up and adjusting dosages, but also will be a good resource for you if anything odd happens that might be associated with bleeding and which might indicate the need for an immediate check of your blood, for example let's say a nosebleed that is hard to stop.

A risk of course is that should your blood clotting be poorly controlled, there is the possibility of a blood clot forming in the area of the stent and that this could possibly break free and cause a stroke, a pulmonary embolism, DVT, or could block the stent. On the other side of the clotting issue is the need to make sure your blood is not TOO thin; it is a careful balancing act.

All that having been said, stents have been around for some years and many, mostly older, people are doing this kind of management for their carotid stents already. It is not a terrible thing but you do need to understand this is part of the deal and be prepared.

If all goes well you will be able to go off the coumadin at 2 months when the endothelium has covered the stent, but the possibility is there that your body will be slower than that and you might have to stay on comadin for much longer than 2 months. Another thing to be aware of is that it is also possible the stent may need replacing at some time in the future if it should fail.

On this board we have talked about the relatively safe record of stent placement for people, and indeed stents hae been used successfully for heart patients for a long time. The surgery itself is relatively simple and is an incredible boon for many people as it avoids other more difficult surgeries and restores blood flow.

However I feel strongly that people need to have a good talk with their personal pysicians and make sure you will have the help you need after returning home. That person MUST be prepared to assist with the frequent blood tests and be willing to discuss with you any concerns you have regarding managing that phase of your care.

I also feel that people should hear any concerns that the primary care doc has as well so that you can be very clear as to what it is you are siging up for.

This treatment is both experimental in relation to MS and does carry some risk. You need to make sure you are fully informed and educate yourself with as many resources as possible.

I was very fortunate in that I am an RN to begin with so when we got my MRV resutls and discussed the treatment I felt comfortable going ahead aware of the consequences. I also have a very VERY supporting primary care doc who already spoke with Dr Dake and is ready to step up for me when I get home; we have an appointment for Monday morning already and she will check me out head to toe and do an INR (coagulation test) so we get off on the right foot.

For many people, it may make sense to get the MRV then take the pictures home and talk about what Dr Dake recommended to the involved people who will be responsible for follow up before coming back for the procedure to prepare your healthcare team for your after care and make sure everyone is on the same page.

If you want to make one trip to Stanford, then go to your primary care doctor ahead of time and let them know you are being evaluated and the possibility that you may decide to do this so they will be ready to follow up.

In my case no amount of discussion would have changed my mind, my jugulars were both approximately 80-90% blocked and I had signifnicant collateral circulation. My personal physician was completely comfortable that this was the right procedure to do given the amount of occlusion. Her comment? "I'd do it if I had that kind of blockage..." I feel the risks I undertook given the evidence I have that a blockage is there are reasobable EVEN THOUGH I do not know that this will help MS.

You deserve the same peace of mind: do what you need to do to learn what it is, exactly, you are preparing to undertake.
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
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Postby cheerleader » Sat May 23, 2009 7:03 am

Thanks, Marie. Glad you're home!
Very important advice (we learned the hard way)
Our GP is now on board and we're working as a team to keep Jeff's coag numbers in the zone, but she was not happy at all when we came into her office fresh from Stanford...and Jeff announced he had stents.
She had not read any of the research I'd given her, and had no idea what we were talking about. And we got an earful.
Now, she's seeing Jeff's improvements and is caught up, but I wish we had been more communicative before the procedure. She and Dr. Dake are working together.
Marie and Jeff are doing the heavy lifting here, hopefully it will be smoother sailing for those ahead.

And the blood thinning is a big deal. Jeff's mobile and is less likely to fall, but he's not on his bike and is exercising by walking and elliptical machine until he gets the all clear from Dr. Dake. Can't take any chances of falling or bad bleeds. Would this have changed his decision to get the stents...no. Like Marie, he was severely occluded...but this is something to consider.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sat May 23, 2009 7:11 am

Thanks Cheer I was hoping you'd mention that story.

A Dr like Dr Dake usually sees people on referral ie: my doctor calls him and says can you see my patient. It is unusual for us to self refer to a specialist like this, and presents a unique issue in regards to follow up.

Let's all say thanks to Dr Dake by making sure our primary doctors "have his back" and are ready to be an active responsible member of our health team. :D
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 Arcee » Sat May 23, 2009 8:50 am

Thanks, Marie. Good to have you back (not that your sister wasn't fun to read :wink: ). Hope you are feeling better.

Really great information you are providing. Thank you, and Cheer, again.
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Postby peekaboo » Sat May 23, 2009 10:00 am

Thank you for this post marie - as a nurse you are taking care of all of us :wink:

Ok I printed out a package for my GP and due to the holiday weekend I will have to wait til Tues to drop it off. I will be leaving for Cali on Sat. the 30th so I don't know if we will communicate before then. I will give Dr Dake my GP's contact info. and vice versa.

My gut...spidysense...the universe is telling me everything is going to be ok. I have faith in this procedure and the outcome (what outcomes & how much is to be determined) But this is GOOD. Besides the spirtually of it all...this is real science. Not Bee sting or hyberbolic therapy.
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Postby mrhodes40 » Sat May 23, 2009 10:37 am

You are welcome, I want to help, but please allow me to reiterate ad nauseum that everyone needs to be educated and seek the advice from their personal doctors. AN individual person's situation may make them a poor candidate for this surgery or otherwise need some special consideration (for example other meds you take). The BEST person to have this talk with is your primary who knows you inside and out so you can be clear how it will impact YOU.

again we can thank Dr Dake by taking measures to be sure he has superb support for us at home. That is OUR job.... :wink:
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 skydog » Sat May 23, 2009 10:46 am

A BIG THANK YOU !!! JEFF AND MARIE for paving the way for us to fallow. I have a running list of Q's about the post treatment. Thanks for answering a few with your continued posts of both your recoveries. Sounds like I better wear a crash helmet since falling is common for me now. Learned a good PLF from my skydiving years, but sounds like taking it much easier and safer is what I will be doing soon. A friend of mine is on his second set of stents for his blocked arteries feeding his heart. The procedure as far as I know is to slip a new stent inside the old one. After that it becomes bypass surgery time. With a little luck by the time we get to that point we will be growing new replacement parts. Glad to hear your home Marie. Take care... Peace Mark
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Postby peekaboo » Sat May 23, 2009 1:34 pm

hey i am at the end of the rope ...this is my only option ...a famous ms center barrows in az, the doc said i was fucked because i have ppms ...therefore i am not going to wait for anyone...so if one calls ccsvi a risk.,.srew them better than chemo...

I am getting pissed w/cya scare tactics do not thawt my ambition

Like i said ...we are adults and of sound mind ...we can make our own decisions Tired of guilt trips :evil:

do not pressure me ....i dont have relapses but other do....
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Postby mrhodes40 » Sat May 23, 2009 3:12 pm

Damn the torpedoes full steam ahead! I get it, I did it myself :wink: :lol:

IT is not "
cya scare tactics .....guilt trips .....and pressure


sharing and gathering information is not any of those things.

Your primary care doctor knows you like no one else, she may remember a drug that could interact or some other detail about you that will be important to take into consideration.

My doctor did coagulation tests the week before my stents to make sure before I went. This is because I have old coagulation issues and we needed to make sure about that. It came out OK but I did have to get stat bloodwork on Friday before I went, and it was possible I was not going to get to go -ugh. Dr Dake was in the know about all that too because they talked.

My primary is also all ready to follow up. That is a good thing we don't want people in the boat that Cheer was in with her doc all mad....that was a bummer.

And yes I am sick and tired of other people telling us what to do too. it almost feels like "You just will take your MS diagnosis and take the treatment I say you can have and you are just going to LIKE IT!" :evil:
what a crappy disease this is!
Last edited by mrhodes40 on Sat May 23, 2009 4:11 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 cheerleader » Sat May 23, 2009 3:36 pm

Peek...
Believe us, no one here is going to thwart anyone! Jeff and I learned the hard way that it's better to have someone at home on your side. Our primary doc likes Jeff alot better than me (he's a real sweetie, I can be a word that rhymes with bitch...) She tore me a new one when we came in after his procedure. It took her by surprise.

So now he goes to our GP by himself for bloodtests every week, and smiles and sweet talks her, and she is happy for him and hoping for the best. She's on his team. I stay home :)

You just need a doctor at home who can monitor your coagulation numbers, and someone you can go to if you're having pain or bleeding issues after the procedure. That's all Marie is suggesting. You don't need "permission" to be tested and treated for CCSVI.....but you'll need support when you get home. If you can secure it before you go, you'll be better off. And you've got a fighter's spirit, which will serve you well in recovery!
cheer-
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureOrBust » Sat May 23, 2009 7:43 pm

mrhodes40 wrote:A Dr like Dr Dake usually sees people on referral ie: my doctor calls him and says can you see my patient. It is unusual for us to self refer to a specialist like this, and presents a unique issue in regards to follow up.
Just a side-word, in Australia, you cannot see a "specialist" like Dr Dake, without a referral from your (or a) primary.
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Postby peekaboo » Sun May 24, 2009 4:38 am

I am sorry guys...i am so commited to this therapy I just lost it! Let's blame it on menopause :twisted: I know you guys mean the best. Please forgive me for my big mouth :(
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Postby mrhodes40 » Sun May 24, 2009 5:55 am

It's OK peek!! I am like you: all out of options so I believe I understand. We NEED this.

Ok anyone reading along here who is for autoimmunity please tune out now, you don't need to read this:

I have no inflammation and I am SICK and TIRED of being told autoimmunity is IT and that I am just screwed sorry, so sad, see ya'; you're just unlucky. I believe that MS is not autoimmune and I am grateful to finally have something I CAN do. Thank God for Dr Dake.
I look forward to your report back Peek!! I am so excted to hear what other patterns of stenosis there are.......

Yours are spinal lesions? Are you htinking azygos?
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 peekaboo » Sun May 24, 2009 6:52 am

Thank you marie -

I have both..even dawsons fingers in the brain so who knows what viens are doing what :?
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Postby mrhodes40 » Sun May 24, 2009 7:54 am

I am curius as heck I can't wait to see how some other patterns start to show up and put 2 and 2 together. It is so facinating.

I have to say that I was going down there thinking maybe there'd be nothing fixable on me--I was kind of shocked when it was so clear because I was preparing my heart for it to be maybe nothing....

Next weekend your turn I can't wait to hear!!
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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