It is now just about 4 months out from my surgery.
Here's the scoop.
My every day seems like every day same old now I am used to my level of function it does not seem new. I still use the rollator to go to the mall. I am using a cane only to go to a restaurant, but walk carefully to do so. I have done some hot outside work, I get hot and feel MSey going back in, but it is nearly the same as going out (I recently took the chore of roundup for the yard-feels good to do a job and take one off Bill's list). I take a pair of hiking poles that is how I get around the yard--that and with great caution... So little change to report function wise vs last report.
Here's the big deal the neck issues. Ahhh, the neck.
Here's the thing, the accessory nerve arises from the same embryonic tissue as the jugular. They are intimately entwined they go through the jugular foramen a together along with the carotid. All 3 are in one sheath.
When the stent was opened it put pressure on my accessory nerve, this caused the nerve to stop functioning correctly. It is not talking to my trapezius any more. The trapezius is a big diamond shaped muscle in the back, top of the diamond at the base of the skull, side points at the shoulder, bottom lumbar area. This large strong muscle holds up and supports your head and keeps your shoulder blades riding flat. Without the trapezius, the shoulder blade on the affected side will "wing" out so that the side closest the spine is sticking out, the head does not have a strong muscle holding it up, and the shoulders sag.
To compensate for the lack of this muscle support, small muscles whose job is to turn the head take over the task of holding up the head. These little muscles have a fraction of the strength of the trap. As a result they get unbelievably sore ie really bad neck aches and headaches secondary to that. any activity that asks you to keep your arms in the air--play piano, type on computer etc. tries those tiny muscles even MORE. They can't do this job.
So my accessory nerve got hurt during surgery. This neck pain has come to be seen as part of the post surgery deal, most of us experience some level of pain, and indeed Jeff had issues but his went away and cleared up by 8 weeks or so. Mine stopped getting better about a month ago and now needed to be tested. I was worried; had it been so pinched it may never come back?? Did we need to save it somehow?
I saw my physiatrist last Mon and she tested it. It is damaged but it is regenerating. It has already covered about 1/3 of the distance down my trapezius. She measured how far it had come and asked how many months it has been then confidently predicted by 9 months it will be all the way back. I am going to do some PT to get a good program and work on strength for it.
SO 4 PT visits have now been done, and I am already gaining perceptible movement in the trapezius. We are in good shape.
What you will want to know now is what does this mean for CCSVI?
I was treated person 2. Dr D thought he needed big stents to get the best blood flow... I have an 8 on the left and a 12mm on the right. It is the right that is so bad.
Dr D now uses smaller stents, a 6-8 to avoid this and he is doing a gentler opening technique to be respectful of the possibility of hurting the accessory.
Many surgeries have possible side effects this may remain a possibility where even if they are careful it is possible for an individual person's anatomy to be such that their accessory is somehow different and thus even with care, it could still be a possible side effect. Your results may vary
Actually it seems like most of the newer people are having an easier road getting over the neck thing and I know Dr D has been watching us to see what is what.
Lew has a non resolving neck issue himself and he is also consulting a physiatrist. I hope his result is as promising as mine. I was so glad to hear my nerve was regenerating....... I can stand this for 9 months.
Philosophically, I knew that being treated so early in the game that something like that might be learned along the way ON ME...
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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