This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm wondering about the restrictions/limitations after surgery. I have my procedure in 2 weeks and I'm trying to prepare. Thanks

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

There is a big list of foods not to eat related to coumadin, and things to look for and be watchful of that the discharge nurse will go over with you, other than that it will depend where your stents are if you get any. Mine are in my neck at the jaw so in order not to nudge them I needed to not twist and look down at the same time , or like wise not up and twist same time. I actually did not drive much, went to town with others; my neck was too sore to look around well, so I didn't. I got spinal accessory nerve damage so it may not be the same for everyone.

Because coumadin puts you at risk if you should fall and hit your head or something, moderate your activities. You will bruise doing the simplest things that do not ordinarily bruise. I was COVERED with bruises. The fact is that people ordinarily have their clotting factors active everyday sealing up minor injuries to the blood vessels before they bleed enough to cause a bruise--only now it can't do that so you end up with large visible bruises where you do something little like tap the door jamb as you go through. I looked so battered you wouldn't believe it. You might get a medic alert bracelet from the pharmacy

To keep the blood nice an uncoagulated, drink lots of water and do not sit still for long periods as these things can encourage coagulation-I had a spasm that caused my leg to whack on the underneath of the chair and it broke a blood vessel, This then clotted. You might ask how can that happen on coumadin? but my doc said it was because the coumadin blocks the clotting enzymes but ALSO the ones that break down a clot so if one gets started it is harder to clear up. Be safe drink water and keep the blood moving.

Those are my best ideas, i have given a lot of coumadin in my years as a nurse but I had NO IDEA what it was like to live with it...nothing like experience

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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

also as a precaution, you can get a cheapo medic alert bracelet at walmart, it pops open and you can just write something short in there like "Coumadin". I used a label maker for mine and tossed in my INR 2-3 rating. Just a precaution in case of accident, you pass out, can't speak and are hurt, all that jazz. Think mine cost like 5 bucks. No big whoop.

Hey ya never know right? Most of your life post-op will revolve around the INR, testing, adjusting the meds, etc. Well, I should say "most of your concerns in regards to the surgery". Once your INR pops up near the 3 range he'll want to lower it down. Least that's what happened with me but everyone is different, big time. I believe he wants that spike to get a good roto rooter on it before settling back down into the mid 2 range. (Just my opinion). Getting an order for a lab to do the testing will be the first order of priority there in your first week. This I set up ahead of time so it was no problem. I made one Dr. visit post-op, got the order, took it to the lab which is offsite, they get the standing order and voila, I just pop in there at my leisure, however many times I want. They fax the results to the Dr. but I also made surethey put Alex's fax number on there so she gets a copy too, this will go into your record. Then I confer with the doc's asst on the phone to get the results, we chit chat about the dosage, then I call or email Alex to let her know what dosage I'm going to.

It's only for a couple months, but if was for long period of time, I would DEFINITELY want the home tester and adjust the meds myself.

Don't be surprised if your INR swings up and down for the first couple weeks. Perfectly normal. Mine didnt even get into the 2-3 range til like 2 weeks post op.

And to think, besides my nagging background MS, the only medical stuff I dealt with was taking 2 advils if I got a headache, maybe every 3 months or so.

Gonna drive this sucker til the wheels fall off....

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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

Thanks, such good information. I will get a bracelet before my trip. I'll google the info on foods. Is alcohol restricted only for precautions or for interactions?

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Marie and Mark gave you good advice. I might add on the Coumadin and the Plavix......the early stenters were on one dose of Coumadin a day, and two doses of Plavix a day. I believe Dake has started to change that protocol - my daughter is taking one Plavix a day. Dake told her that he thinks us early stenters were getting the extreme bruising from too much Plavix. My daughter had the procedure one month ago and she is not experiencing the bruising that I did. I wonder if age comes into play here also???

Your INR level can change according to what you eat. I would suggest that you not have a week where you have a spinach salad every day, and then the next week you have no spinach. Try to eat the same kinds of things everyday.

Alcohol - obviously, when you are on the pain killers that would be a no-no. I chose not to have any alcohol during the time I was on the blood thinners. I know that some stenters have had their glass of wine or their bottle of beer everyday. My understanding was that it was counterindicative with Coumadin. Also, balance is one of my MS issues, and alcohol dramatizes the balance -- I did not want to be knocking up against a wall or lose my balance and fall while on the blood thinners.

Sharon

Just wanted to add that I ended up going off the Plavix altogether because the bruising was just too much. And I just kept my spinach and alcohol and blueberries at a steady pace and did fine INR-wise.

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diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

How long did you have to take Coumadin before you switched to Aspirin?

They actually are taken simultaneously and after 2 mos. the Coumadin should end and the aspirin is for life.

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diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

Does anyone know if 'stenters' are required to be Premedicated with an Antibiotic before dental treatments, as with some prostheses, mitral valve prolapse, etc.?
It seems like these stents would be on the list of those things needed to be premedicated.
thank you all, Rose

This is a good question, although considering there is no lip for anything to hang up on, this should be inside your endo. lining so there's no hang up for the little buggies to incubate in. I know when we did all that high purity pharmaceutical piping it was a real bearcat, FDA regs require zero crevices for any bacteria to fester in. The welds are so smooth on the stainless steel pipe, it's nearly seamless. I can't help comparing everything to pipe, it's in my genes! lol. Same principle regardless.

I know he says no dental work while the healing takes place, which of course makes perfect sense. I know my dentist is favorable to that when I had some work done he prescribed some just in case. Considering what those buggers do to your heart valves and such...

Mark.

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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

One of my biggest restrictions post-surgery has to do with my shoulders. It has been 5 weeks since my CCSVI surgery and I have a hard time raising my arms out to the side. My shoulders really want to roll forward and my shoulder strength has diminished markedly. It has improved some in the weeks following the surgery, but it still bothers me.

I had 4 stents placed in my jugulars, two on each side. I've yet to see benefit from the procedure, but since I've had MS for thirteen years that I know of, it may be that it will take me a little longer.

There you are Katelyn, please read my post in the regimens section of TIMS Marie's stents CCSVI where I explain about my accessory nerve damage. I also have stents in both sides and I also have trouble raising my arms. The left one got better at about 10 weeks, as did Jeff's, the right is still bad and in my case the nerve on that side is regenerating. Lew is having this issue as well and like me ended up getting assessment and care from a physiatrist including an EMG to assess the nerve followed by physical therapy to strengthen this trapezius muscles.....
PM me for more infor if you need to
marie

_________________
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

Hi Katelyn -
First, welcome to TIMS! You will find the members here to be not only supportive of each other but they are very informative.
I am also one of the early stenters who have had trouble with the neck and shoulder. I had two stents placed in the left juggular - my stenosis was approx 3-1/2 inches long. Within three weeks of the procedure, I was working with a physio/LMT therapist. The levator muscle lays alongside the juggular vein and it was spasming which caused a chain reaction down into the trapezius and to the deltoids. I took muscle relaxors to calm the spasming. As Marie mentioned in her post, the spinal accessory nerve is also being affected. The surgery caused inflammation and it also caused the surrounding nerves and muscles having to readjust to the new environment.

I am 4-1/2 months out from the surgery. My shoulder is now at about 90%. I still have some weakness and a small loss of range of motion. I have used physical and massage therapy, exercise and acupuncture to help improve and alleviate the tightness and weakness. My LMT has said it will take about six months for complete recovery. I believe Marie was told nine months.

Marie has some good information on the spinal accessory nerve -- I would PM her and have it sent to you. Keep your shoulder moving -- there is a small risk of it becoming a frozen shoulder. Use a Theraband for small arm exercise. Good luck -- feel free to PM me if you have any questions.

Sharom

Hi?
How long until you 'Stenters' were able to drive a car? Just wondering about turning far enough to see those blind spots.

Also, my 'job', as you will, requires alot of laptop time, that I can do from my recliner, desk or bed. Was wondering if many of you were back at that type of thing pretty fast? or not?
Just wondering so I can give a time frame to those who need my info.
Rose
ps. I am sure these questions/answers are here somewhere i just cannot find them. sorry and thanks.

Rose2

Driving a car - I started driving once I was off the pain pills. Turning your head is an issue, but you can adjust - I did not have any problem.

Typing on the computer - anything where you are sitting for a length of time and where your shoulder/neck area might be leaning forward is going to cause you some problems. It took me a couple of weeks before I was able to stay on the computer more than fifteen or twenty minutes. Lew and Marie had the same problem. Remember though -we are the "stenters" who had bad neck and shoulder issues. There are some "stenters" who have had no problems. Everyone is having their own personal recovery issues from the procedure.

Sharon