Hi 
thank you all for support and guidance. Sincerely grateful. I know we have touched on this but one of my worse symptoms is shoulder weakness, trapezius stiff, clavicle a d neck pain. I know @Jules made me feel so much better by advising where this pain was from i.e soinal accesory nerve and infact its quite common but I wanted to ask if anyone has/had these symptoms and experience. Its awful. Many tjanks.
@akc has had lots of issues, and the surgery has aggravated things, so has been very careful and worn a sling- maybe this might help you if you wear it every now and then to give your arm and shoulder a rest?
A muscle relaxant medication or a nerve pain medication might help too; it could be compression from the styloids on the nerve causing pain, in which case a nerve pain med like amitriptyline or Gabapentin could relieve things a bit, or otherwise it could be that the muscles are really tense because of the neck pain and that’s trapping your spinal accessory nerve? If you’ve not tried either heat or ice too I would give those a go on your neck and shoulder.
Physiotherapy might be an option, but you would have to see someone who understands the styloids & ES as any manipulation or exercises could make things worse, same with an osteopath. I don’t know if it’s the same everywhere on the NHS but where we are we can self-refer for physio- if you are able to do that they usually suggest generic exercises based on an online referral form, so I would be cautious doing those to start with if you haven’t seen anyone.
It might also be worth seeing if you can get an MRI done of your neck & shoulder if you haven’t already, in case you have anything else going on with your neck which could’ve trapped the nerve, a disc prolapsed maybe? Although in our area I think we would still have to go the physio self referral route & they would order imaging if it was needed, our GP practice won’t even do that now!
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I had spinal accessory nerve trouble as part of my ES symptoms. My collar bones ached, & my traps, especially left side, were sore. I can’t remember if my SCM was a problem, but I suspect it was because I had a lot of neck pain.
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I have been checked for Tos and no compression showed on my brachial plexus mri. Im thinking it has to be the SAN. Its one of my worse symptoms. Collarbones, traps…like scapula area but my shoulders are so so weak. Like deltoid area. My scm (neck) muscle is either painful. Numb or electric. All my other symptoms are the same…constant bone in throat sensation. Eyes feel strange. Numbness in mouth. Tongue. Face. Stabbing sensation in throat. Random dizzyness. Electroc ear pain or pulsating tinitus and new symptom of hearing loss at times. Cant look left. Its misetable. Im a strong women. Im proud of my strength and humour…but this is all so challenging. Im so flipping sad. So scared.
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@JoJomoo - Nerve irritation or injury can cause muscle weakness. Though I can’t say for sure your styloid is causing your shoulder pain/weakness, there is a chance it is. This is one of those situations where you may need to get a styloidectomy to see which symptoms resolve. Sometimes the worse the symptoms are the longer it can take for them to recover, but other times it’s the opposite - terrible symptoms go away quickly. I had intense pressure behind my left eye, so bad that it felt like my eyeball was being pushed out of the socket from behind. I would even check the mirror several times a day to make sure it was in place. When I awoke from my left styloidectomy, that pain/pressure was gone & stayed gone!!
I’m sorry to ask, but have you gotten surgery scheduled yet? We have so many active members now, I’m having trouble keeping track. 
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No surgery booked yet. Im nhs. Huge wait times. I saw a surgeon who said my styloids were super long and calcified but not a surgery he could do. Im waiting! I wouldnt wish this on anyone.
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I’m so sorry for your long wait. I assume you’re on a waiting list. I’m very sorry for your suffering @JoJomoo & will pray for your symptoms to settle to give you a break. Constant pain is no good & can knock even the most optimistic of us down.
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Im so grateful.
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HI, I’m sorry that you’re having such pain & that it is taking so long for you to be able to get scheduled for surgery. I had surgery about a month ago & my spinal accessory nerve was very involved and therefore took a beating during the surgery. I understand the pain that you are talking about. I had pain in the shoulder, trapezius, and neck before the surgery. It was also very tight and stiff in that area. I also had the weird electric feeling, pulsatile tinnitus, and strangely opposite of you, oversensitivity to sound in the ear on the side where the other symptoms were present (to the point that I needed an ear plug in that ear at times). Once I had the surgery, it made sense because my spinal accessory nerve was very entangled with the IJV. My dr. said that it was one of the worse that he’s operated on. Anyway, I could tell a big difference in the tightness right after surgery. Of course, right now I have damage and soreness from the surgery, but that is going to improve. I am starting physical therapy tomorrow, so hope that there will be some things that will help. Of course, nerves do take time to heal. Anyway, one of the things that helped me the most prior to surgery was to use a heating pad on the back of my neck and shoulder. I also sleep with my arm supported on an extra pillow when I am sleeping on my back . I will let you know if the physical therapist has any good exercises or tips that might be helpful to you. Since you have not yet had surgery, I agree with Jules that you’d want to be careful of what you do since you do still have the styloids & are not totally sure of what is going on. I know it’s painful, scary, and frustrating. You’re not alone and this forum is a great encouragement to help you know that you will get through this. I’ll keep you in my prayers as well.
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It’s good that you have got it confirmed that the styloids are elongated, and that you’ve had TOS ruled out- it’s not much of a consolation but that in itself can take years to get confirmed…it is miserable waiting, I don’t know whether you would be able to see someone locally, like the doctor who diagnosed you, for a steroid & lignocaine injection into the area of the styloids? It doesn’t always work but might be worth a try while you’re waiting for the NHS referral?
Obviously not everyone can afford to go private, we have had a few discussions about whether if you pay privately for just a consultation you can then go on the list for treatment on the NHS, we have been told mixed things, but it might be worth considering to jump a bit of the queue?
Sending you a hug and prayers 
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I have very severe spinal accessory nerve damage, to the extent that it stopped working altogether and I lost a lot of function in my shoulder and arm. Neurologist never found the cause of the damage. Then, a year or so later, my dentist accidentally discovered the calcified ligaments…
Had styloidectomy a month ago and the doc said it is unlikely that my ES was to blame for the SAN damage. But it seems too much of a coincidence to me.
Not hopeful that the nerve will recover after all this time but time will tell.
Hope you can get yours sorted and get some relief.
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Hi!
Yes I have these symptoms often as well on the opposite side of my compression! It has had me ask how this could be related But it is!!
Dr. Hui also explained collaterals and how our venous system isnt lateral but circular and how things flow or don’t flow
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My goodness @Jacqui this is sad to read! Do you have any function? Can you not see a peripheral nerve specialist to see if they can help?
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Hi @Carrie68 sorry to read. How often do u have these symptoms? Mine are daily
Hi @Jules thank you so much
So grateful. Do tou mean go private for the injection? For pain? Or private to see an Eagles consultant?
Hi! Yes mine are daily and exacerbate during day or depending what I do…
I have found cbd ointment and light massage and heat help
Sometimes reclining helps for a bit
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I have read that there are nerve /muscle grafts that can help. But no one has offered anything like that to me - they all said there is no treatment. Even private doctors. I am in the UK and I guess things aren’t very progressive here.
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Im in the uk @Jacqui. Please ask your gp to refer you to the peripheral nerve unit at the RNOH.
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Thank you, do you reckon they can help with stuff like this?
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There’s a face book group for spinal accesory damage…there is a procedure EL procedure. Join the group for advice. @Jacqui
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