This Is MS Multiple Sclerosis Community: Knowledge & Support

Would those of you who had the stent procedure please rate any pain felt on the scale of 0 - 10
(with 0 denoting no pain) for the following:

1) Pain felt during placement of the stents,

2) Pain felt after placement of the stents. Please state how long the pain lasted.

Thank you very, very much.

~HappyPoet

For me, fortunately #1 = 0 and #2 = 2. And for the after I would qualify it that the pain only happened when I moved my neck a certain way and hen only if I did not have a pain killer. I am not kidding when I say the most difficult part was a sleepless night in a noisy hospital room. Not sure why it went so smoothly, but grateful that it did.

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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

1) 3
2) 7

7 off and on for a couple days. The stents up high by the ears are the ones that caused all the pain, never felt the one down by collar bone. I'm at 1 week and fairly pain free.

I wouldn't let pain be the deciding factor. It's no fun, but it's bearable. The pain meds work if you can use them. Morphine worked good. Percoset would have been fine if I had eaten first. I've just been using extra strength tylenol since leaving the hospital. Everyone's different though, but you can do it.

I was person 2 and Dr D used huge stents on me so.......

#1 is 8 but instantaneous ONLY when the stent was opened

#2 ranges from 2-6 in my neck and is still there BECAUSE I personally had huge stents and my accessory nerve got pinched. It is regrowing and expected to finish at 9 months.

Dr Dake learned on us early people and uses smaller stents and a gentler technique now in hopes they can avoid that, however, and this is just my lowly opinion, I believe with this surgery and with placement in the high jugs this will continue to be a possible side effect of treatment, just like with revimmune a possible side effect is bladder issues because of the drug they use. In medicine you can always learn of side effects and do your best to avoid stuff like that, but you can rarely promise that it "won't" happen. They didn't know ahead of time that the accessory nerve was something to worry about....he learned that on us first few people. You can thank Lew and I..........both of us got this side effect.

All that having been said, in my case this is worth while and the pain I have is manageable. My left stent I should mention is fine, no neck pain there with the 8mm stent it is just the 12mm that hurts... NO ONE is getting 12mm any more certainly not a little lady like me. He is apparently using 6-8mm and the gentle technique now.

I got a bottle of percocet on surgery day 5 months ago and am still using that small bottle up, not too much med for me. I cut them up...

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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, I just want to add that when I was being wheeled into the OR, the nurse asked if I had any concerns/ questions (or maybe I brought it up, don't remember) and I asked about pain during the procedure. I has rad Jamie's post about Mel being uncomfortable and was concerned about what I might experience. The nurse was adamant that I should not feel pain during the procedure and to let them know if I did. True enough, I felt no pain.

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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

Maybe a 3 during placement on the right side which immediatley went away and 0 on the left side, I went very well took 2 pain pills during the night and hit the morphine pump 1 time. I managed the pain with advil per DR Dake. He gave me Percocet but I never took them.

My pain was worst in my back from lying flat. I quess I had it too easy.

Cat

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

Marie, I must have missed this being explained elsewhere, but what is the "gentle technique"?

Apparently --I am NOT of course an expert at all-- the stent can be opened "hard" or gentle. I understood that a hard open is to really squish it in there and open it to full capacity.

_________________
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

I felt no pain during placement of the stents, either on the left or the right side.

I've had quite a bit of pain throughout the recovery, from muscular pain in the neck, shoulder, and back. Also, during the first week of recovery there were one or two intense headaches. I was on percocet during this time and have no idea what the pain intensity would have been had I not been.

I've also experienced some accessory nerve damage on the right side, my right pectoralis major muscle does not activate when my arm is in certain positions, primarily when raised above the shoulder. This makes that arm quite weak in certain positions, I am trying to work through this on my own but may need to consult someone to help me with additional exercises I can use to spur recovery.

So, at it's worst, and while on pain meds:

1) 0 - no pain

2) 7 or 8 - off and on, tapering down during first 3 weeks of recovery

But, take into account I'm male, so have never gone through childbirth, and I'm not from Texas.

--Tracy

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Just read Marie's post for me. I was even thinking how I'd explain the fact that #1 had a period of very intense pain that lasted about 2 seconds and that the rest of the actual surgery didn't hurt at all! The rest we are in the same boat and since I had it done on July 15th and am still dealing with right side neck and shoulder pain, once again for the same reasons Marie stated, I don't think I'm a good barometer of what to expect.

I talked to my young friend who just had the procedure done yesterday and she is doing just fantastic. Dr. Dake even elaborated to her and her Dad (my connection to her) that he has learned SO much from doing this over the last few months. The smaller stents, paying more attention when going through the foramen, all of it. She had one stent put in on each side and she was just fine yesterday afternoon. A lot has to do with where it ends up also, but I think the smaller stents, coupled with what he learned on all of us so far has made this procedure much more comfortable on the whole, but I'm sure there will still be exceptions.

So for me #1 = 0 except for the oh so brief opening
and #2 = 8 or so since I had a really hard time with the pain for about two weeks.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

C'mon Lew
The pressurization of the stent was a big "OUCH" for me - I must be a whimp! Rest of the surgery was uneventful. So, let's see - #1 - 30 seconds = 9 and two hours = 0. I also had the big sents.
#2 - My throat hurt like H**l - when I swallowed - first night = 7
#2 - Second day = 5
Took pain meds for five days then went to Tylenol

Sharon

The pain during the procedure was a definite 10 for a good 45 minutes and just a uncomfortable 3 in the lulls, but Dr. D was also trying for the bigger the better. He ended up using two 7 mm stents because of the high up location and tight squeeze. Now the good part was that after it was all over I was virtually pain free in the stented area for a full two weeks post surgery. Then a few twinges that have now developed into constant pain with sharper twinges of pain that I would have to give a rating of 3 average with some sharp 7 pluses. I have a high pain tolerance but this is beginning to where me down. Hoping for better days ahead. Peace, Mark

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Plant a BIG Garden Live in the Moment

Dang, Mark, you're due for a break.

I'll second that. Chronic pain can work on you pretty hardcore. I feel for you bro.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

It seems inevitable that the presence of a rigid structure (stent) in a tight compartement (the neuro-vascular) in the neck will cause some compression of the structures present in it (especially the vagus nerve and it accessory branch).
A dilated jugular vein above the stricture is unlikely to cause any compression on the nerves (as suggested by some in this Forum), given the low pressure present in them. This is why I am not aware of the presence of chronic pain in Zamboni's patients who received the liberation procedure without the placement of stents.
I am sure that the present attitude of dr Dake to use smaller stents will result in improving the incidence of this unpleasant complication.
Unfortunately we learn as we go thanks to brave people.

GiCi