I had stents placed May 19 '09. I was person 2. I have a 12mm stent on the right--that stent damaged my spinal accessory nerve resulting in shoulder issues. Dr Dake is aware of this and started using smaller stents with a gentle open to try and prevent this issue. It may be true that it remains a possible side effect of high jugular stents even with these measures. It seems a few more recently treated people are having some shoulder issues so I wanted to share the little bit I have learned.
Please let me explain what shoulder issues I am talking about.
The Spinal accessory nerve--SAN from here on--travels out of the jugular foramen along with the carotid and jugular and in the same sheath. The vagus nerve is in between the jug and carotid. The SAN peels off and heads out to the trapezius, it is the nerve that tells that muscle what to do and that keeps the muscle strong.
The trapezius is a huge strong diamond shaped muscle, the top of the diamond is your head, shoulders are the sides of the diamond and the point is the top of the low back. It supports your heavy heavy head and is the main muscle that keeps the head in alignment on top of the spine. It is a big muscle. It is the main muscle in a shoulder shrug and allows that movement. The trap also supports the shoulder blades and keeps them in place. If you are in a gym and there is a bar that you pull DOWN while sitting below it, that uses the traps. As you do that the shoulder blade glides flat on your back as part of the motion because the trap stabilizes the shoulder blades.
If the trap is weak from accessory nerve damage, the head and shoulders are greatly affected. Lifting the arms is difficult and you may be unable to shrug or it may be weak. The shoulder on the affected side may droop and it can even result in a secondary issue with the thoracic outlet if the drooping is allowed to go uncorrected (sometimes they use a sling for this).
Another really miserable part is that as we live we use our arms and shoulders---so if the trap can't do it, the levator, scalenes and rhomboids step in and try to do this. These are small muscles....too small for the task so they get MISERABLE and painful. On me the area that "Spock" would grab is the spot that is so painful. This is an overuse problem of those muscles and you can develop myofascial trigger points in these muscles that can refer pain to the base of the skull, along the eye and into the head and even cause headaches.
Here is a paper on a case of adhesive capsulitis with SA nerve damage
http://ptjournal.apta.org/cgi/content/full/81/3/936
One of the important things to take away from this is that physical therapy and assessment are important.
In my case I waited for my neck to resolve about 3 months before I made an appointment to see my rehab doctor a physiatrist for assessment of what I was sure was an SAN problem. I waited because Jeff had issues with his neck that resolved at about 10 weeks--I gave it a bit more time then went on in for assessment. I was given an EMG--a nerve test --where in it was determined that my trapezius was not getting the signal from the SAN that it should in the lower 3/4 of the muscle--the nerve had regrown down the top 1/4. It was assumed that my nerve was damaged but regrowing and I have been in PT ever since a couple of times a week (we are also doing gait re-training--ugh--again)
For me it has been important not to try to overuse the shoulder until the trapezius is strong enough to do the job--those small muscles can't be "strengthened" to help out, the trick is that as the trap comes "back" it needs to be strengthened again so it can take over its normal job---it is a fine line to walk to strengthen the weak trap but not let the levator rhomboids or scalenes kick in and try to help. This is why PT is helpful. A hot towel to the neck is good to relieve the pain of the overused and painful muscles
On physiatrist recheck 3 months after the initial visit it was determined that the nerve was in fact still making its way down and the scapular winging was resolving. I am far less painful than I was, I type a lot of every day now but early on, anything that I had to lift my shoulders for like typing (you kind of float your arms up some to do it--playing the piano also does this as Alex pointed out)was terrible.
LINK to picture of winging and exercise explanation
Some of us have been able to see the top of the shoulder blade peeking up over the shoulder in the mirror from the front--Loobie for example.
All of this is meant as information to discuss with your doctor, not medical advice of course.
Please others share your exercise regimen and what worked for you on this thread so it can be a resource.
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