There have been complications in this procedure, and your doctor is correct to caution you. A few people (more than Lew- and maybe they can comment) have had what appears to be accessory nerve damage. This nerve comes down out of the jugular foramen and crosses the IJV between C1-2 in the cervical spine....this is right where many have stenosis blockage, and the stent is putting pressure on the nerve. This area of the neck is a tight space...and if you make room for the stent and an open IJV, there is a risk the nerve may get pushed out of the way. Marie can speak more on this, but her physiatrist has told her that in her case, the nerve is regenerating and should heal completely. My husband had shoulder pain and spasm, but no long term nerve issues. This is new territory for stenting. Venous stenting has been done for many years in other parts of the body with good patency and long term results, but there are not many folks with IJV stents.
Being on coumadin is also a risk. Read up on the blood thinner protocol. We had a beloved member here at TIMS, Holly (peekaboo) who died. She had a stoke- unrelated to her procedure-but her being on coumadin did not help. Her INR number was not very high, and it may have all been a horrible coincidence, but your doc is right about the blood thinner. I was so relieved when Jeff was done with that.
So, there are many things to think about. This is surgery, and it carries risks. We didn't know what those would be five months ago when Jeff has his stents put in. We know more now, but we still don't know the long term patency of stents in the IJV. You need to talk about this with you doctor and be fore-warned.
In my husband's case, he is very happy he did this, and the end of his fatigue, heat intolerance, better sleep, less pain and spasms is his reward for being a guinea pig. The ballooning did not work for him- his jugs needed the stents to stay open.
Hope this answers your questions-
On Sunday, Holly flew back to Arizona with her best friend. During the flight Holly fell asleep and she never woke up. Holly was immediately taken to St. Joseph's Hospital in Phoenix. The tests showed she had suffered a massive stroke. The stroke was caused by an arterial bleed in the brainstem. The MRI did not show an aneurysm. The doctors said there possibly could have been a lesion which would have caused a weakness in the artery, but they could not confirm. Holly's Coumadin levels were within the low range of 2.0 when she was tested at Stanford and at St. Joseph's. The stroke was not caused by the Coumadin; but once the bleed started, because she had Coumadin in her system, the bleed would not stop. Sunday evening the family was told that because of the extensive damage in the brainstem, Holly would not survive.
Trudi, Holly's sister wanted to make sure that we understood the stroke was not caused by the procedure at Stanford. This was confirmed by the neurologists at St. Joe's and Dr. Dake (Dr. D was with Holly in Phoenix Sunday afternoon ).
Lyon wrote:I'm on record a LOT of times for agreeing with the idea that, once someone is aware that they have cranial venous occlusions, having the operation to repair the occlusions is a considerable option.Loobie wrote:Well I have to post about my shoulder you've all heard me bitching about. I was hesitant at first because I figured this would be pile on fodder, shell game for Bob to say it's not a good idea because there are some potential complications.
I'm sure not going to gloat at your pain and I agree that the smaller/more pliable stents would seem to be less likely to cause the painful complication you're enduring and you've been very honest about that complication from the start.
I and people considering the operation appreciate your honesty so that they can better make an informed decision.
Hopefully he will warn about it, but maybe he knows that he has that problem licked with stent size and technique. At any rate, him being aware can only help
I really wanted to try and hit a drive off the first tee, but I don't think that's going to happen. Not a big deal, but I thought it would have been cool to just take one swing!
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