Thanks so much! I will join.
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I meant maybe see Mr Hughes privately for a consultation & see if that bumps you up the list a bit? But thereâs no guarantee it would work, @PatientD has seen him privately for surgery & then a follow up on the NHS eventually, maybe she might know the situation as to whether it might get you surgery a bit quickerâŚ
A local ENT might be able to give you the steroid injection, donât know how long youâd have to wait for that?
Hope @Jacqui that you can get some help for your nerve damage 
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Hi @PatientD did you have your surgery as a private patient or see JH for a consultation to get on his nhs list to have surgery on the nhs? Many thanks 
Thanks Jules
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Hi, I saw Mr Hughes privately & had operation at Cleveland. No one in NHS would help me, hence going private. Mr Hughes has now seen me in his NHS clinic for follow up at UCLH McMillan Cancer Center but to be honest I have only seen him there once, often itâs his colleagues instead, but they do help me. I do not know if Mr Hughes is allowed to do skull base styloid removal on NHS. I should ask him in future. Tbh I think many NHS trusts wonât remove styloid close to skull base as itâs high risk surgery. So I would consider a private consult to try to find out where you might get help. Being proactive & pushing for help is important. Take care. D
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I am so sorry you are experiencing so many severe symptoms. Have you been checked for IJV compression as well? Though as already mentioned, if not done by a surgeon that is highly experienced, it is a risky surgery to go back to the skull base. I am in the United States and we have one in particular outstanding surgeon in whose hands we are as safe as can be. And then we have a few also really good surgeons who can work on the majority but not all cases where the jugular is involved very effectively. I did not experience the type of electricity that you described, but my neck traps also clavicles pecks and arms have been extremely problematic. And because they were so sensitive I ended up getting weaker and weaker in my upper body as any use triggered such spasms. I do have bilateral thoracic outlet syndrome, but that is separate from the SCM muscle and from the trapezius muscle in my case. I had surgery a little over two months ago and my SAN Was mangled in the IJV along with two other nerves and it was also wrapped around the styloid and the hyoid. So all of that needed to be untangled and I now have a road ahead before I get good use of my arm back again. Itâs silly how your nerves can kind of turn off and go on vacation for a while and yet still your muscles can be furious. I guess because theyâre trying to work. Iâm so sorry for all that youâre going through. I am using various tools post surgery but thatâs because my left arm was hanging so limply and without the muscles to hold it up it was having a huge impact on the shoulder joint, and an even bigger one on the clavicle, and up to the incision site⌠not good. Heat was the only thing that I found pre-surgery was helping with those issues (and I still use it now all up my back (itâs like it dominoes down the spine) and the back of my neck and it soothes my clavicles too. I am sure you have tried all of the topicals (icy hot type things) I have a fragrance allergy so they were not an option for me⌠ONE tip that did help only while using was a tens unit (traps, youâre not allowed to put it on the side of your neck and the back of mine was so sensitive I couldnât use it there at all. But at the lowest setting a tens did help to âdistractâ me from it. doesnât fix it but makes it go away while in use. You can buy them over the counter now so perhaps worth a try?
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Wait whaaaat? Are we almost the same person? Letâs connect. Seriously⌠I am 8.5 weeks post surgery. I also had (have severe sound sensitivity in the ear where the surgery was⌠(but I also lost 80% of my hearing there overnight so - yeah)⌠My surgeon said I was in the 99 %ile of entanglement of nerves âup thereâ (in the top centimeter of the jugular) and the SAN was the worst of it, tangled in the JV and wrapped all around styloid and hyoid. So like you my SAN has gone on vacation. How far out from surgery are you? How are you feeling? How are you doing with the arm? Do you have the right tools/support sorted for it? (I am as good as I can get but open to ideas as itâs not 100%).
I use a clavicle stabilizer like this (but PT taught me to wrap the part around the arm really high - so the thing is strapped around my chest) - it keeps my shoulder from bopping around and messing up my clavicle when I go for walks: I do NOT use the wrist part. Having my arm rotated in like that or in a traditional sling was really painful (makes sense as itâs pulling the shoulder IN and pushing against that clavicle - and canât stand ANY pressure on my trap on eiher side soâŚ). But I found that they sell slings for shoulder abduction.
But I found that they sell slings for shoulder abduction. stuff and bought one. The sling part doesnât work for me - again, the pressure ont he trap and also the way itâs set up felt like my writs was being squashed⌠but the pillow - wrapping that thing around me⌠I use it all day every day and just rest my arm on it:
I do still struggle and have mega knot on my now even more sensitive trap and I think itâs because if you line your arm with your body (as we should) the front half of my forearm/hand is hanging over the edge, requiring a continuous mild tension to counterbalance, that engages my silly trap and also the lower trap⌠Iâd love to hear what you are finding helps you, how far out you are from surgery and would love to exchange PT notes. We are both of an age (female and over 40) where we are at increased risk of developing frozen shoulder, so PT and daily correct exercises that focus on painless and as passive as possible ROM (not as in lifting your arm in the air!) are really important for us.
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Hi all, I hope you are all having a good week and symptoms are being kind to you. Itâs so interesting reading all of your posts. Left arm, shoulder, neck and upper rib/clavicle pain were some of my first symptoms and the ones I find the hardest to deal with. Iâve had the pain for 10 years now and only just started taking Pregabilin (nerve pain meds) which have alleviated the worst of it. My arm position has so much to do with the symptoms and have also found a traditional sling only amplifies things more. My muscles are much weaker on this side, especially under my arm, I think its the serratus muscle and my shoulder blade feels like it doesnât know where it should position itself when I use my arm. There is slight winging with certain movements too. I also have continuous clicking of spine or bones connecting to the spine around the bottom of my neck when moving my head and arm at the same time. Iâve also had my brachial plexus imaged and nothing doing on there but if I attempt to exercise using arms for support or arms upward, I get incredible pain in my chest (like nerve pain across the ribs) as a consequence. So it feels like something is entrapped.
Heat works best for me too. I have recently seen a PT (pre-surgery) who worked on releasing my trap and sternocleidomastoideus but I think it aggravated things more. I had intense pain for over a week, especially in my neck where the compression is. Iâm thinking the muscles are working so hard to compensate for others that are switched off and to alleviate pain elsewhere, as my body was generally very unhappy with it all.
@akc and @Jacqui , how are you doing now? Any improvements in the past few months?
My surgery is a few weeks away. Iâm guessing they might find something similar, though itâs just my stylohyoid ligament that has calcified from what I have been told, so not sure how the nerves would become entangled with that cause.
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Youâve hit the proverbial nail on the head, @BraveKat! When important muscles switch âoffâ, & other, often smaller muscles get tasked w/ replacing their function, pain & muscle tension are the result.
When a muscle is tight due to nerve irritation, massage & PT wonât help as much, or can exacerbate the problem/symptoms, until the cause of the problem is taken care of i.e. w/ ES the nerve involved is decompressed or liberated from entrapment so it can heal. I really, really hope your surgery is able to help your accessory nerve settle down so you can eventually be shoulder pain free.
@akc - Iâve had you on my mind recently & am wondering how your arms/shoulders are doing, too. Any improvement?
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That does sound similar to what I have going on.
I am now almost 6 months post surgery and, unfortunately, have seen no improvement in arm and shoulder function. Very disappointing. Mr Hughes, my surgeon, told me he didnât see any sign of the SAN during surgery. Which doesnât seem quite right to me because clearly there must be some reason that my SAN stopped working, and if itâs not the calcified ligament I have no idea what it could be. I didnât have any injuries or operations that could have severed it. So - sadly I am stil not completely functional and have seen no improvement in ES symptoms either.
Next step is to hopefully find an excellent physio who understand all of this neck stuff! I recently saw an NHS one and he had never heard of the stylohyoid ligament!! Needless to say he wasnât particularly helpful.
Really hope you get better results and some relief from the SAN symptoms.
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Hi @Jacqui, thank you for your reply. I am so sorry to hear that it feels like the surgery hasnât been successful at this stage in your recovery. I am pre-surgery but from where Iâm seated (with the pain and inability to do much of anything) can just imagine how it must feel. Iâm at a point where I just want to do the damn surgery myself. As ridiculous as that sounds.
Did your surgeon open up behind your ear to see the skull base and the exiting nerves? I know much less than most on here but without seeing the whole picture (if he didnât clearly expose this area), there is a chance that he is only commenting on the area that he did see. You know your body best, and if you canât think of any significant trauma that could have severed the nerve than all you can do is listen to your gut instinct. I was wondering, do you get nerve pain in the arm and shoulder or just weakness of the muscles? I took a nerve pain med for the first time 2 weeks ago, and that was the first time I didnât have any aching pain in my arm/shoulder.
Have you taken any nerve pain meds and seen a reduction of pain symptoms in the arm/shoulder? Could that tell you if the nerve is still intact, and just affected by residual damage (yet to heal) or still under compression as a first step.
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@Jacqui, a nerve doesnât have to be severed to cause the type of problems youâre having. More than likely, it was injured or something shifted during your ES surgery which is compressing it & the result is suppression of nerve activity which is causing pain & motor loss in your shoulder/arm. I completely agree it seems odd Mr. Hughes wouldnât have seen your SAN during surgery since itâs very present in the area where the styloids & s-h ligments are & often needs to be protected or even moved out of the way during surgery. Finding a good PT, as you suggested, would be a good start toward beginning to rehab your muscles & even the nerve. There are some nerve stimulation therapies, too, which a good PT should be able to use or at least discuss w/ you.
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The surgeon told me he took the styloid back to skull base but who knows! He also told me before the op that he would remove the entire styloid and calcified ligament, but then after the op told me that he removed 4-5cm. Which doesnât sound long enough to me for an entire styloid and fully calcified ligament.
The scar is all the way along my neck, but not behind my ear.
I am in the UK and options are limited. Where are you based?
I donât have nerve pain, the nerve is not working at all. I had a nerve conduction study which confirmed this. So the SCM and upper trapezius are non functional and my shoulder is drooped, which causes its own problems with pain and wonkiness etc.
I do get nerve twitching elsewhere, on both sides. So clearly something is getting trapped or irritated. No idea who to see about this. The neurologist told me âitâs because youâre wonky nowâ. Not helpful!
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@isaiah_40_31
It was like that before I had the styloidectomy, and was part of my decision to go ahead with the surgery.
We have tried to rehab the muscles but with the nerve not functioning it wonât come to anything.
I do feel I need some help now to minimise the instability as that seems to be causing ongoing issues. Whether things can be improved or not, with my lack of neck muscles, remains to be seen. I have been doing my own exercises that I found on YouTube lol but will try to get a real life physio on board again.
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There has recently been a lot of discussion of a new-ish type of MRI scan - the FIESTA MRI or 3D CISS scan in which nerves are visible. If it would be possible for you to get one of those scans of your neck to view your accessory nerve, you might be able to find out what is hampering your SAN & get that situation fixed.
Iâm sorry that you had problems before surgery & they didnât respond by recovering post op. I understand that trying to strengthen muscle w/o the nerve support it needs would be futile. I hope a good PT can be helpful though.
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@Isaiah_40_31
Thank you, that could be useful! I will see if I can find anyone in the UK who can help.
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