Suspected Chronic Levator Scapulae Syndrome

Hello folks. 12 Months ago I started to have right shoulder instability, that was diagnosed as scapula dyskenisis with scapula winging. I had a loss of strength in the right shoulder as it would drop when I tried to do simple things like turn on a light or open a door.

Six weeks of physio to stabilize the shoulder, particularly some wasted Rhomboids failed to do anything and the condition got worse. X-rays, CT scans, Ultrasound and an MRI showed some bursitis, torn ligament and arthritis in the shoulder. I had cortisone to help with the healing and that seemed to make things worse, as a rhythmic rolling motion started to take hold in the shoulder.

I ended up with a Neurologist and was diagnosed with Segmental Myoclonus. I took Clonasepam and Sodium Valporate for several months and also got botox in the neck and right shoulder. Nothing worked and the shoulder movements turned into a powerful jerking motion.

A few things to note
1. There's no pain associated with this condition. Just stiffness in my neck.
2. The condition when it started was action induced. By that I mean the shoulder only showed instability when I tried to do something I.E. open a door.
3. The issue when it first started was only when I was upright. Sitting and lying down caused no problems. It now occurs when I'm sitting as well

I've had blood test as well as Brain MRI's, EMG etc and they have revealed nothing.

I was referred to a movement disorder specialist who diagnosed Segmental Dystonia and prescribed some more powerful drugs. They made the shoulder jerking every worse and in the end after trying several different drugs we stopped drug therapy. The Neurologist now thinks it's not Dystonia, because the drugs should of worked or done nothing. The fact they they make things worse does not tie in with dystonia.

The Neurologist has decided to Do botox in the Levator Scapulae, which makes sense because that muscle stretches from the top of the scapula to the neck. When the shoulder jerks I can not feel any muscles tensing, but I can feel the scapula on the top of my shoulder trying to burst out.

If you look for "My Dystonia" on YouTube, you will see me.

I'm pretty certain that I have a case of Levator Scapulae Syndrome that has gone ballistic for some reason.

Any feedback would be greatly appreciated.

Zac

It is hard to diagnose these things without seeing them but I have to say sometimes the most obvious stuff can be missed Tightness in the levator scapula with pain at attachment on top of scapula and radiating around that area, pain up along the neck and also in both levator attachment at the base of the skull, along with tightness and pain in subocciptal muscles is a very common debilitating condition often caused by poor posture driving, sitting at a computer, lyiung in bed reading a book for long periods i.e. where the head is forward and the levator muscle is stretched and under tension for long periods. Yes scapular dyskinesis dosen't help but is not what is causing the pain.....Deep tissue work on the levator , it's attachments and the suboccipitals can often provide massive relief , the hard part is getting somebody skilled and strong enough to do it. Doctors etc. can often ignore this as a form of treatment for this condition because it is kind of outside their experience........Obviously doing exercises to correct scapular dyskinesis and exercises/ training to correct posture are important along with treatment. This is a common condition I encounter everyday and be quite debilitating.......but usually easily solved...one to three treatments depending on how bad the condition is and provided person does homework.........so my advice would be try and find a physio known to be good for deep tissue work and see what they think....

Tough case. It does sound neurological - almost like tardive dyskinesa but the drugs should have worked. Having ruled out most pathogens and serious neurological problems may I offer a approach of mechanical origins:

1st we know the shoulder is and has been unstable for a long time (torn ligament, AC degeneration? ect....) - This needs to be passively stabilized!
tightness will subside because the strapping will provide support meaning the muscles don't have to (as much as they would without strapping - anyway.). The one muscle that was hiking the shoulder blade (this raises the acromiom space and is common antalgic position of the shoulder) has now been made inactivated by the botox putting more stress on the romboids and will probably lead to further progression of OA in the shoulder. A bonkers thing, in my opinion, to do when there is a already established structural instability of shoulder.

2nd the romboids, levator scap all anchor the scapular to the spine. Spinal manipulation will often help these muscles to relax - if it is done at the insertion segments. I suggest you try this first as it will most likely aid recovery. there is no such thing as its just muscles or its just joints every chronic syndrome involves both the musculo and skeletal systems - have them both checked out.

3rd the torn ligament - how bad is it? will it get better from strapping? The degeneration most likely of the AC joint might be giving osteophytes in to the subacromial space creating irritation.

Question is do you need a surgical intervention in shoulder??? and is this just a heighten reaction to chronic instability? I would say it is - given that these where the only positive finding on all your tests.

yet - strangely they have not been delt with properly. If you can add the full reports of all tests that would help.

Also cant see you tube video can you put link.

Niall Marshall-Manifold
Doctor of Chiropractic

Thanks for the details response Niall. Here is the video link https://www.youtube.com/watch?v=EsYkf4FMrvg

Here is a summary of my scan results

• EMG – Nerve conduction studies and needle examination were normal
• Right Shoulder MRI – Supraspinatus tendinopathy with partial thickness articular surface tear involving the mid to posterior tendon fibres, measures 12mm AP x 12mm transverse and involving up to 50% of the tendon thickness.

Moderatesubacromial/subdeltoid bursitis
Moderate AC jointhypertrophic degenerative change with oedematous marrow within thedistal clavicle and marginal osteophytic spurring. Type II acromialmorphology with mild anteroinferior spurring.
No evidence of labraltear or paralabral cyst.

• Power in all muscle groups nornal. No atrophy/fasciculations.
• EEG: No epileptiform activity
• ECG: Normal sinus rhythm
• FBC, UEC, Magnesium, calcium: normal
• ESR 8, CRP 1
• CK 463
• TSH normal
• MRI Brain – December 2012

Unfortunately, allsequences have been degraded by patient motion artefact. There is noevidence of recent cortical infarction on DWI. Cerebral parechymalvolume is preserved. There is no evidence of mesial temporalsclerosis with preservation of the hippocampal complex volumes. Thereis no hydrocephalus or surface collection. The main dural venoussinuses are patent with preferential drainage of the superiorsagittal sinus to the left. No focal intra-cranial abnormality isidentified.

• MRI Cervical Spine – December 2012

Again, patient motionartefact degrades all sequences. In the scanning position, there isnormal vertebral alignment. The spinal canal is capacious. Thevisualised cervicothoracic cord is normal in calibre and signalthroughout. There is minor mid cervical degenerative spondylosiswith anterior osteophytic lipping at C5/6 and C6/7. There is nosignificant focal disc protrusion or neural impingement. There is noaccelerated facet joint arthropathy.
There is Minor midcervical degenerative disc disease. Otherwise, normal examinationwithin the limitations of the patient movement artefact

In my efforts to find a cure for my condition I have tried shoulder braces, taping the shoulder, Acupuncture, Deep tissue massage, Chiropractor, Aromatherapy, Hypnosis, Meditation and an Inversion Table.

Cheers
Zac

sorry thought i replied but must not have updated

Interesting.

The first video it looks like your AC joint is popping in and out. Even through the shirt.

Do you have a visible bump above nipple to the side of the collar bone. when standing naked chest and arms hanging?

If this joint is severely unstable it would explain why you feel better when lying down. e.g. scap is stabilized when on back.

It would also potentially explain why you got worse with drugs that slow down neurological firing of muscles. as it would inhibit the control of the shoulder girdle.

The interesting investigation would be x-ray but not lying down you would have to do it under load to see the joint in a normal circumstance. The supraspinatus tendon damage just further exaggerates the shoulder girdle instability.

Have you had a standing loaded X-ray? taken

Quote:

---

Originally Posted by SMILER2013

It is hard to diagnose these things without seeing them but I have to say sometimes the most obvious stuff can be missed Tightness in the levator scapula with pain at attachment on top of scapula and radiating around that area, pain up along the neck and also in both levator attachment at the base of the skull, along with tightness and pain in subocciptal muscles is a very common debilitating condition often caused by poor posture driving, sitting at a computer, lyiung in bed reading a book for long periods i.e. where the head is forward and the levator muscle is stretched and under tension for long periods. Yes scapular dyskinesis dosen't help but is not what is causing the pain.....Deep tissue work on the levator , it's attachments and the suboccipitals can often provide massive relief , the hard part is getting somebody skilled and strong enough to do it. Doctors etc. can often ignore this as a form of treatment for this condition because it is kind of outside their experience........Obviously doing exercises to correct scapular dyskinesis and exercises/ training to correct posture are important along with treatment. This is a common condition I encounter everyday and be quite debilitating.......but usually easily solved...one to three treatments depending on how bad the condition is and provided person does homework.........so my advice would be try and find a physio known to be good for deep tissue work and see what they think....

---

Sorry ignore what I wrote above. I didn't realise there was a video and only just saw it now. Never came across anything like this before and I feel it needs somebody very specialised to look at it possibly a neurosurgeon....I feel it is outside the scope of any manual therapy or simply giving stregthening exercises on their own etc....It might mean trying different specialists until you get an answer. Sorry I cannot be of more help.

Your problem is definetily related to the nervous system but not necessarily the central nervous system. Some questions: Have they done an MRI or other imaging of the neck and Thoracic spine? Nerve conduction studies: Which nerves were involved?
I give you here an hypothesis:
In case you would have a long thoracic nerve injury, a complete one, You would get severe winging of the Scapula. Most likely you would not feel any pain from this (unlike other nerves which have a bigger distribution e.g. the radial nerve). The winging would be caused because the Serratus Anterior (the muscle innervated by the Long Thoracic nerve) is extremely important for stabilisation of the shoulder girdle. As a result other muscles as the upper traps, levator scapula and so on would try frantically to stabilise the girdle and forming active triggerpoints which could cause spasms, twitching and so on.
Look, I know this is a wild guess but you have nothing to lose to look into this. Also to remember that the Long Thoracic nerve is a very superficial nerve at the neck and can therefor easily be damaged without you having noticed.
Wild guess...

Thanks to everyone for their input. I'll answer the questions briefly here.

• No bump visible above the nipple.
• Yes the X-ray I had was taken standing.
• The right scapular is winged

My EMG covered the following nerves

1. Median sensory (palmar)
2. Ulnar sensory )palmar)
3. Median motor
4. Median F wave
5. Ulnar F wave
6. Superfical radial sensory
7. Lateral antebrachial sensory

Conclusion: Nerve conduction studies and needle examination were normal

1. MRI Brachial Plexus
2. MRI Thorocic Spine
3. MRI Cervical Spine

Conclusion: Essentially normal study. There is no evidence of cord lesion, focal disc prolapse, right radicular lesion or brachial plexus mass.


Hopefully this covers all the questions asked previously.
I'm going to see a Myotherapist on Wednesday who thinks he may be able to help. I'll be sure to inform him of the feedback from everyone here in the hope that it will help him with his diagnosis and treatment.

I'm also booked in for another Brain MRI and CT Scan next Monday as the previous one was partially incomplete as I was unable to stay perfectly still during the procedures.

I am heading back to the Neurologist on Monday and he will administer Botox to the Lav Scap in the hope that it is the cause of all my problems.

Thanks again to everyone for all your input :-)

Nerve studies done are for Radial nerve, median nerve and ulnar nerve: all but one: The long thoracic nerve, which is a separate branch not part of the Brachial nerve. Hope you get this investigated. As I said it is superficial and if e.g. you would have had at any time upto a month a severe blow to the neck or the side of the thorax ( musculus Serratus anterior area) or something similar it might not be working and the only sign would be... inability to stabilise the shoulder girdle.

Quote:

---

Originally Posted by neurospast

Nerve studies done are for Radial nerve, median nerve and ulnar nerve: all but one: The long thoracic nerve, which is a separate branch not part of the Brachial nerve. Hope you get this investigated. As I said it is superficial and if e.g. you would have had at any time upto a month a severe blow to the neck or the side of the thorax ( musculus Serratus anterior area) or something similar it might not be working and the only sign would be... inability to stabilise the shoulder girdle.

---

Thank you very much for this feedback. I will be seeing my Neurologist next Monday and I will quiz him about this.

Regards
Zac

OK. Saw a Myotherapist today and he found something that no one had identified in the last 12 months. On my right, the first and second rib are elevated. It would seem that this could be the cause of my shoulder spasms and sternum pain.
I haven't mentioned the sternum pain here as I thought it could be wear and tear from the constant shoulder jerking. I have mentioned it to my GP and also to my current Neurologist as it has been causing discomfort for the last 7-8 months, but they didn't think it was significant.

The Myotherapist worked on it today, but freely admitted that he wasn't qualified to realign them, so I'm going to see my Chiropractor on Friday to see if she can put them back in place.

Looks like the Elevated rib was a consequence of my condition and not the cause. The Chiropractor had to do a few adjustments on my spine as well as releasing some trigger points in my neck and upper trap. Hopefully the Botox injections on Monday will give me some relief.

With the presents of scapular winging. Long thoracic nerve is very good diagnosis. Have seen this in neurological cases book on the cd but lost the dam cd. If anybody has the cd might be worth comparing the utube video to the case video