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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