Thanks for this video. I came down with symptoms of what would eventually be diagnosed as Parsonage-Turner Syndrome on May 5, 2019. I suffered rear right-shoulder pain that opioids and steroid shots would barely budge. Later electromyography showed nerve damage in my deltoid, infraspinatus, and supraspinatus plus two muscles in my thumb. After I was diagnosed, I did as much online research as possible. All of the then-current literature really lowballed the periods of extreme pain, pain, and diminishing pain (1 to 2 weeks, then 4 to 6, then a few months). Your estimates of extreme pain for 4 weeks and then considerable pain for 6 to 10 weeks are much closer to what I experienced. It has been 5 months since my initial pain, and I still suffer from constant aching in the affected shoulder muscles. I lost about 90% of function within a week of the pain starting. After 6 weeks of physical therapy and a couple months of hard effort at the gym, I am about 80% of my prior strength. But there is no good evidence for how long it might take to get back to 100%...
Im four months in to this I’ve just got back from work and I’m in severe pain. The average timeframe for pain is well below what I’ve experienced too. Codeine just isn’t doing it. There’s only so much Omeprazole and Naproxen I can take before it messes with my stomach. I sincerely hope you are a million times better by now.
I'm going on my fourth month. The first month and a half to two months was excruciating I take oxycodone and it was not even touching the pain I could not even hold my arm with the gravity that pain was so severe. My doctor put me on a very super duper large dose of steroids 100 mg for 2 days 50 mg for 2 days and then 25 mg for 2 or 3 days and it really did help the pain you might want to try that if you have lingering pain. I also have no muscle tone in my right tricep as well as severe weakness. I have systemic lupus and I can only imagine that's what it might be related to in my case. I seem to get all the strange things. Apparently this affects one in 1,100,000. I did not have an injury or do anything that caused it it just started one day for no apparent reason. I am going to get an MRI done on my brachial plexus hopefully it will show something. Have any of you had an MRI done of that or of any area and come up with a cause? @UNIQUEFITNESS74 @Haiely m @Chiss Church @Hailey m
Thank you Doctor. I was struck by this in February of this year but not correctly diagnosed for over two months and I had to suggest this to my treating physician after learning about it online. I hope that more medical practitioners become aware of this condition.
I currently have this problem it’s been 13 months. I woke up with severe pain,It affected my left side( shoulder, upper chest, triceps and Lat’s) . However my atrophied muscles have improved in size after regular weight lifting. But I’m still experiencing weakness. I’m still waiting for the nerves to heal.
Thanks for this - When I was in the acute phase in April of 2021, it was this video that helped me understand what was going on. I was several days ahead of the doctors in realizing that this was the condition I have. (Or, more likely, they were being thorough in diagnosing me before they talked to me in detail about it) The way you speak of the acute phase pain (It is truly otherworldly) leads me to suspect that you've had first-hand experience treating PTS patients. Mine is bilateral - left suprascapular nerve/infraspinatus, right long thoracic/serratus. It came on simultaneously with Bell's Palsy, which in retrospect was a very lucky break, since it forced the doctors to think along neurological lines right from the start - hence I had a confirmed diagnosis within 2 weeks of onset.
This is the most informative video on this condition on RU-vid, so thank you for doing it. As others have mentioned, most other sources on the internet say the acute, painful phase lasts for hours or up to two weeks, which I believe comes from Parsonnage and Turner's original paper on this from the 1940s! Your video is much closer to what I experienced pain-wise. Very few, if any, other sources mention a secondary, less painful period after the acute phase that gradually subsides. For me, that secondary period consisted of sore/aching muscles as compared to the initial sharp, burning pain of the initial phase. My case was a weird one in that it did not involve the upper trunk at all, but just the middle trunk and long thoracic nerve.
On set June 28th 2019 . 5 years, and the pain and weakness still haunt me . mine was brought on by stress to right shoulder went back to work part time 11 months after onset I turn 65 in September and looks like I'm done working my pain is reduced by 3/4 I never took pain meds at any time but the worst pain I lived alone so no one seen what I went through the same day work comp turned me down I recieved divorce papers . To put it lightly it's change my life for my duration here on earth looking forward to the healing when I'm done here !😊 in this life in his time 🙏👍
I myself have had 3 attacks. One in 2013, bilateral + right leg. 2nd in 2017 and 3rd in 2020. I was diagnosed and treated at the UMC Radboud University Hospital in Holland. They are very knowledgable about this syndrome. I was diagnosed by Drs. Nens van Alfen. Unfortunatly found out that I am sensitive to these types of injuries for some odd reason. I have had 3 attacks, am currently 35 yrs old. The first one was really severe. The second one was the second worst and the third one was almost peanuts compared to the other ones. Lol. Even within one patient, i.e.me, it can present so differently. I truly do hope more attention will come to this syndrome because there are so many silent sufferers out there. I wish I could give them all a gentle hug and recognition for the pain and suffering. I have had years of rehabilitation. Learning to walk again, use my arms again. In my experience Prednison did help reduce the inflammation in the second and the third attack. And thus reducing damage to the nerves. I found it helpful for the pain within a day or two. It does not take away the pain but it reduces it by a max of 2 points on the scale. They where a year too late the first time around. Thank you so much for making this video. Really. It is very informative and the bullitpoints really help. - Marijke Edit: also a big thank you for recognising the severity of the pain. It is horrendous. The first stage. I never knew this kind of pain existed.
I just developed this after receiving my Covid-19 shots in my right arm. The initial pain was excruciating and the doctor put me on painkiller and anti inflammatory drugs. After one month the pain has lessen but I still have numbness in my arm and thumb and lost strength in my muscles.
Probably an overestimate. A few of us have seen cases in a suitable time period post AZ but it's impossible to prove causation because numbers are too few. What I would say though is that the risk of a raft of neuropathies as either direct or indirect consequences of Covid are many orders of magnitude greater than as a consequence of any vaccine. Though clearly, its very unfortunate for those affected. Wishing you a full and rapid recovery!
People are saying from the covid vaccine well that would be from me49 strain of toxoplasmosis Moderna because mother has in brain Known as Alzheimer's dementia Alzheimer's schizophrenia delirium Alzheimer's schizophrenia and final dementia Dr is FINALLY convinced and waiting on toxo tests Lost 3 years of life (whole family) and don't think for a minute that glyphosate doesn't play it's part
Suffering from the same for last 20 days... The pain is hell especially in late nights... Have lost function in proximal part..Luckily the neurologist have diagnosed it early... On steroids.. Hoping for best.... Great In depth video
I've wanted to crawl out of my skin at times. I had a nerve study on my arm that indicated carpal tunnel syndrome, however that never explained the pain radiating through my shoulder, neck, throat, shoulder blade, clavicle, etc. My primary care doc must have thought i was nuts when I put about 20 'X's" on the body silhouette used to show pain locations. For years I felt like my doctors thought I was malingering. I even was diagnosed with Fibromyalgia but that never seemed quite right to me. I'm starting physical therapy next week and I am hopeful that I will find some relief.
I think I’m dealing with this now and I’ve been to two urgent cares and one orthopedics I told them all my symptoms and they seem to only be focusing on my wrist when that’s not even bothering me now it’s my clavicle shoulder and upper arm they keep saying it’s probably mild carpal tunnel and it’s stressing me out because I really think this is what I have and I’m so and confused as to what doctor I can see that will correctly diagnosis it
I had a covid vaccination and have had pain since october. I also will note that labs consisted of sjogrens. I am having a mri of the shoulder next week . cannot lift my arm behind my back to weak pain in shoulder down to the forearm and pain in the chest muscle at times .
I had this almost 10 years ago: intense pain, muscle spasms all down the back, then the horrific muscle weakness, making you wonder if you'll ever fully use that arm again. My triceps have still not fully recovered, which leaves me with one arm bigger than the other.
@@wendy834 It took about 4-6 for the acute phase to pass, but the muscle weakness is still an issue. I had nerve conduction tests, and apparently I still have impingement.
I am currently on my 8 th episode of this horror disease .. first one in 98 ... last year i finally noticed some real improvement in certain muscles ... and.. now this.. all gone again. 😢 💔
"obviously this isn't particularly very good news for anybody who has it because it's a very painful condition..." YES! So frustrating, this is my second time with it and the pain--far worse than childbirth. I have no markers or yardsticks for this pain, made worse by mis-diagnosis. Here I go again, but at least I understand it better this time. THANK YOU!
I just experienced this same issue happen to me about 4 weeks ago during a heavy deadlift. It wasn’t the weight that caused the issue but rather the bounce/impact from the floor as I held on to the bar. The rebound threw my left shoulder back and I immediately felt as though I had paralyzed my neck. Everything in my neck became real stiff - I couldn’t look up or down or left or right. My neck had to stay in a neutral position at all times, otherwise the already excruciating pain would become unbearable. This affected my left arm, which is my dominant side - also very common according to research. I couldn’t sleep for close to two weeks straight, due to nerve pain down my arm and around my shoulder and scapula. It was the worst experience I’ve ever had. After about two weeks the pain finally subsided but I noticed I had nearly no function in my lower lat, tricep and pec muscle. This was a sign that it was PTS. Those three particular muscle groups wouldn’t fire/engage at all. They also atrophied right away. Seeing all of this happen was devastating and scary being that I am a very fit and strong individual, who could easily knock out 90 push-ups in two minutes for my Army PT test - now I could manage more than a few reps, and they weren’t pretty. I felt hopeless and lost as I wasn’t sure what it was. I’ve never experienced anything like this before. But I did gain some hope as I started researching and found videos and articles of almost exactly the same symptoms/issues that everyone else was having, self-diagnosing my new found issue - PTS. I’m not sure what lies in my future as far as possible issues like this happening again. The good news is I am noticing strength coming back slowly, which I think it is super important in the recovery process to be active. Resistance training and other “physical therapy-like” exercises to help recover will do wonders. Eliminating stress is also just as important as living a fit and healthy lifestyle, as stress itself can cause things like auto immune diseases, and have been shown to be prevalent and present in people experiencing PTS. I thought I was healthy before this happened to me but this has shown me that my mental healthy, which I wasn’t taking care of, is just as important as my physical health. You really can’t live a healthy life without either. They’re both equally important.
Dude literally happened the same for me but in my case I don't know where it comes from. I worked out for years, I'm 27, this shit happened to me about 18 months ago starting with pain and all that shit gone after a week, I'm right hand and my right arm and shoulder didn't work as usual anymore, literally couldn't lift my arm over 90 degree for a few months. Rn I'm still not back at a 100% recovery, but at least i feel stronger as the weeks go on, few months ago I couldn't even do a Pushup cause of the pain. Would be great to hear in what Stadium you are rite now. I also had a very bad Scapula Alata in the beginning what is now gone.
I was diagnosed with this about 1.5 years ago and have gotten basically zero help from the millions of doctors ive seen since that time and before that. It of course took them about 6 months to even diagnose it and even then im suspicious they were even correct as they had many notions of what it was before they settled on this. I know you cannot offer medical advice on a youtube comment, but im desperate for perhaps a suggestion on where i might look for help, how i might look for help, how to find a qualified physio for rehab, etc. because everytime i have attempted rehab it only serves to aggravate the symptoms for the rest of the day and the following day. I still have ranges of motion i am incredibly weak, external rotation does not happen without really involving other muscles like my traps to pull my scapulas together rather than the rotator cuff.
No one has talked about the type of pain that this is …all you say is pain …how do I know if I’ve had it ..if you can’t describe the type of pain because what I had was like shocking and it went from my shoulder to my arm to my hand and kept moving around …so I have no idea if I had it
Yeah I have. Not as bad anymore though went through a stage of really bad vertigo but gone now. Sometimes it can happen but only lasts a little bit. I still don't know if I have this condition but it was a sudden onset of pain and my arm went completely numb. All the areas mentioned in the video of my body were very sore and weak, also my scalene muscles felt like they were ripping. Almost 2 years later and I still have it but at least my arm isn't numb anymore and can do normal tasks now but I still experience pain in all those muscles every day, it won't fully go away.
I think I have this without pain. I just can’t turn my neck all the way to the right, without feeling a pulling, and my grip on my left hand has been feeling weaker. Should I go to the doctor, or just ride this out? I hate the doctor.
Thank you for this informational video Dr. I am a therapist and have worked with a patient diagnosed with Parsonage Turner Syndrome. This is very helpful and educational. Do you have any good resources or EBP articles for interventions that you recommend?
Amazing video Toda! Are there movements that should be specifically avoided? For instance if doing push ups is painful but one is able and willing to push through the pain to keep strength up as best as possible, is that damaging? I assume given that it is a neuritis it's more just a matter of time with regards to recovery and everything else you do is to try and maintain function and prevent atrophy?
I’ve just been diagnosed with this. Going for nerve conduction tests at UCH soon. Very pleased with the level of care I received. There was no delay in treatment and diagnosis. This video is insanely helpful. You provide a great service that is unquantifiable in value. Thank you.
can you update me on your situation now. i hope you are better, i am dealing with this injury too its been a year. how are u recovering what drugs are u taking? every dr i see seems like he doesnt know how to treat me and just tells me to wait it out but it is too painful
My father and I have both developed symptoms that appear to be PTS 4 and 3 weeks respectively, after our second covid vaccination. We both had shots in the right arm and it is the right shoulder and arm that the pain started out of nowhere while we were sleeping. Neither of us had a trauma event. We happened to be on the phone and he mentioned he was seeing an orthopedist and I said I was too. Then we realized it was for the same thing. Hmm
Great video! I definitely am experiencing these symptoms. I had deep tissue massage and ice baths for the inflammation. Working out 5 days a week, isolating the affected arm helps. I wonder if its stress induced at all.
The question of stress is one I have asked myself many times. When I was first hit with PTS, in Jan 2010, I had been in a high stress situation brought on by the economic crash in 2008/09 - the kind that wakes you at 3-4:00 in the morning and makes sleep impossible. I was 62. I had also been having some painful neck problems for a few months, which just went away on their own after the PTS began. The tension in your shoulders brought on by stress would seem to have some possible effect to this layman, but who knows. I am also a Vietnam vet, and was diagnosed with NHL in 2018 - Agent Orange presumptive. I also wonder if PTS can be brought on from a chemical reaction that affects nerves. The VA in 2015 added "Parkinsonian Like" diseases to the Agent Orange register. Good luck....and keep working out!
This is fantasticly informative! What inspired you to create it? Do we know what's going on on a cellular level? If for instance this condition occurs after flu, is there some sort of autoimmune reaction that's started or is a response to nerve damage ? Thanks again!
Thanks that's very kind of you. This whole channel is dedicated to increasing people's awareness and knowledge of the various medical problems that Neurophysiologists encounter and this was one of a long list. One of the many challenges of this condition is the relative lack of histology from within the Plexus nerve tissues. The first rule of medicine is to 'do no harm' or in the Latin original - primum non nocere. Getting to the Brachial Plexus is a major surgical dissection and once there, removing nerve tissues is almost guaranteed to cause more harm and this is why it is avoided. When biopsies are occasionally performed (case series are few in number and have few subjects within them) they are done in the lower arm to isolated nerves and tend to show relatively non-specific and variable signs of non-specific inflammation and degeneration. Most of the antecedent causes are identified from peoples memories of the weeks before rather than from hard laboratory findings. For all the above - our knowledge is relatively limited but there are a sufficient number of pointers to indicate an autoimmune process. Bw Simon
I am 2 months post-op. As you early steroid use, that happened with me because i went to an urgent care first and they gave me steroids and said if the pain hasn't subsided in 72hrs go to ER. But doc called me the next dat and told me to go in. I did, and within a few days I was in surgery. HUGE difference! My arm has had only a little wasting so far and no paralysis, ( knock on wood!). I don't know if the steroids helped keep the pain and atrophy back in my case but so far I feel pretty lucky. The process scares me a little because I hear in a year my use of it could be gone and it will just look like a bone. 😵I hope not! But yeah, for the first stage maybe the steroids made evreything that followed even better.
Simon, I hope you can assist, I worked out during a gym circuit session( on a military exercise in the UK) and woke up in the early hours with severe pain in BOTH arms. After many months of misdiagnoses I was told I have bilateral brachial neuritis, I mean 1:100000 in one side, what is it in both? took me a long time to finally get nerve decompression surgery in both shoulders, infraspinatus and four other points on my body leaving some pretty horrid war scars. I am serving in the military and was refused compensation as they told me that the gym work wasn't attributable to the injury and there is no known cause! I have been trawling the internet, tried to speak with experts to establish a link between gym work, specifically lifting overhead so that my military discharge will be due to the cause of the military service. Any assistance would be great!
Great video and nice to see someone talking through the symptoms. I have been diagnosed with this following a flu virus. Extreme pain for approx 3 weeks. Muscle wasting on my left lat and arm. Pain is now simply a dull ache and I am thankfully noticing improvements. My main issue is wrist flexion as it seems to have affected my radial nerve. Is their any evidence regarding recovery period based on individual base level heath/fitness?
Thanks Tom! Not really. For any person with a reversible neuropathy, if they are generally healthy and aren't nutritionally deficient they will do as well someone who is super fit. It's those with vitamin deficiencies or restricted diets that are more at risk of not regenerating their nerves. Hope that helps and Bw, Simon
Glad I found this. I couldn’t explain the pain until I saw the comments and it’s all similar. Doctors kept saying a pinch nerve etc I know what that feels like/ this was different.
I and my son have the Hereditary Neuralgic Amyotrophy.Thank you for this video.Mine first showed up when l was pregnant after a severe migraine with aura which l,m plagued with also and curiously so does my son have them.At this time l had no idea l had such a condition,l was in alot of pain and saw so many different doctors this originally affected at this time both arms were extremely weak, and the pain was worse when lying down and sleep was impossible at night l also had numbness on both arms.My husband and l went from doctor to doctor but no-one had any idea what was wrong with me l was told originally l had bulging discs but because l was pregnant,an x-ray and MRI were out of the question.l was so desperate l went to a chiropractitioner to help my pain and for me to regain power of my arms.l also had bad neck pain. 2nd time my left arm started with extreme pain,l was already seeing a rheumatologist who had diagnose me with ankylosing spondylitis ( which was a misdiagnoses) and had me on meds too been diagnosed with small fibre neuropathy now. She also didn't recognize the symptoms told me l had a tendonitis and gave me a steroid injection,where that night l couldn't breathe from the pain and ended up in hospital as it affected my phrenic nerve.lt was the most frightening thing l have experienced again it went undetected.During this time my neck was always in pain and my shoulders and arm weakness was definitely apparent.l had another episode ,it still went undetected.Until l had another episode ,l was in so much pain l thought l was having a heart attack, stupidly I didn't go to the hospital, the following day my right arm was completely paralysed and days after my scapula stuck out.My GP took photos and contacted my Neurologist,my husband and l knew it was brachial neuritis from looking up the symptoms and we realised I've been suffering from this all this time from my previous history.lt took 10 months before I received a nerve test where even then still positive.l then received 6 sessions of aqua therapy but my arm was never right and l have recurring episodes, I received another nerve test for years after the original nerve test and you can still see that it wasn't healing yet.l still have episodes and have nerve pain down my ribs and under my arm pit also one of the episode's l had nerve pain on my elbow. I have issues sleeping on my right side since the episode where the scapula stuck out as l feel my breathing restricted. During this time my middle son also suffered a bad episode where his right arm dropped l knew immediately his problems he was in so much pain and only 16,it took ages for him to get a nerve test or for the doctor to believe it was actually brachial neuritis, again it took 10mths.Eventually lvqad diagnosed with Hereditary Neuralgic Amyotrophy. Sorry about my huge text but l want to share my story.During this time l also have lower back issues,with bad weakness and leg pain.lt started the last 3 years l,m having these episodes where the pain is coming on so bad l am unable to stand up or straighten my back .l know that Hereditary Neuralgic Amyotrophy can affect your legs is it possible this is causing my episodes. I live in the Scottish borders,any information will be very much appreciated thank you.
A very worthwhile video and hope it helps publicise the condition more. My orthopaedic surgeon has just diagnosed this 2 weeks ago though I've had this about 8 months now. As it is such a rare condition he wants me to attend a medical examination with med students. The weekend just gone I had nerve conduction tests done which confirmed it was PTS and that 2 nerves in my shoulder aren't firing? Although it is stated that muscle wastage comes soon after the pain eases , this was not the case with me as my muscles became a noticeable weaker and muscles wastage was visible about 6 months on. I do weight training weekly so noticed that reps and weights with the corresponding shoulder lessened and continue to do so now which is a concern. I have an MRI scan appt mid November. I had also been previously diagnosed with multidirectional instability in the same shoulder.
I seem to have just gone past the first stage, following a slapped cheek infection. After two trips to A&E (the second involved giving me morphine, which only mildly dulled the pain, but at least let me sleep for 2 nights), the fourth consultant came up with this. I still have to see someone face to face about it, but the symptoms and painlevels ring true. When the shoulderpain started, I noticed that the soft tissue under the collarbone was extremely sore. Is this a usual presentation of this ? The worst for me was the lack of sleep...one can't function on 1 hour of sleep and my liver is ringing warning bells from the cocktail of pain killers. I just hope that the referral appointment comes through soon.
I think it should be fair to say that hourglass constrictions of nerves have shown to be certainly associated with it and removing them been successful with many patients.
I really appreciate this video, six weeks into an acute extremely painful bilateral presentation. I am having brachial plexus MRIs in a few days - wondering what they are expecting to see? They are also having me do bilateral EMGs - You did not mention this as a diagnostic tool and do you feel this is necessary and helpful? I also have a history of arterial and venous thoracic outlet syndrome post car accident six years ago and wondering if the TOS condition could be a cause of the brachial neuritis. I look forward to your answers and thank you so much for your great explanation Of this not well-known disease.
Hi Christine, welcome to the channel. I can't answer individual questions and you clearly have complex circumstances. Wishing a speedy recovery, bw Simon
I got diagnosed with this condition 3 years ago . unbelievable pain for 3 weeks and then went to the gym and found my entire left side of my body way weaker than my right . I then found my body to have atrophy of the muscles on all of my left side , been to neurologists and doctors and everyone scratches their head , no way should this kind of nerve damage cause atrophy in my bicep , triceps , chest , lat muscle , Traps , quads , buttocks and calf muscles ? now keep in mind i'm in Canada and the medical system here is pathetic for care , it may be free but its careless and there's very little follow up or determination to cure or figure out the issue , the just pick a diagnosis send you on your way and off to the next patient. wondering if you've ever come across someone who's had a one whole side effected or if this proves that i have been misdiagnosed .
Where are you in Canada? It is abaolutely critical that you see a very well qualified sports physiotherapist. IMS, PRP, and a very distinct set of exercises. I can tell you first hand that the care over here is God awful. I saw no less than 7 different hacks who could not for the life of them help out. I had this condition a long time ago, 3 fingers in my right arm were paralysed as well, and in my other arm 2 fingers were locked for 2 years before the nerves regenerated.... Anyways if you can take away anything from this, it is that finding a very well reknown physiotherapist to free up your individually unique presentation of neruromuscular nerves of this syndrome, neuritis, amytrophy, whatever they want to call it will save you years of struggle, heartache, and frustration. Don't give up. P.S I wanted to know what part of Canada you are in to perhaps help find or suggest the correct Physiotherapist.
You have my same symptom. I had the pain for about 4 week. That I dealt with no issue. But the loss of strength in the gym was un bearable. Then like you the muscle loss. My right side bicep tricep and pectoral went flat. I need to know what I can do to get my mass back up in my muscles.
@@shasolo tens machine on the muscles effected is what I found and also forcing the issue at the gym , worked through some intense pain but I’m about 90% . Still a size difference between my left to right but the strength has returned somewhat . Seems to be irreversible damage
Thanks for raising this important point and potential issue. There is a genuine question regarding causation and association of such conditions which are being looked into by large collaborations of Neurology colleagues. However, regardless of that, there are far more negative neurological outcomes from getting covid, both directly and indirectly (by orders of magnitude) which one day I hope to discuss when more accurate information is known. Thats apart from the respiratory, cardiac, renal, thrombotic, ophthalmic and other serious complications that can result from getting Covid. So even if there might be rare complications (which should be discussed and disclosed) it's still overall better (in my opinion and that of the broad medical community) to have it than not. Bw Simon
@@DrSimonFreilich I find it frustrating that so many people can't understand that it's possible for vaccines to trigger this (and GBS and Bell's Palsy) and for the vaccines still to be worthwhile. I estimated loosely from the van Alfen study that the probability of being re-triggered on the second dose and booster was on the order of a few percent, but concluded that I was still better off getting them.
Glad I found this video, approx 2 years ago, I attempted a 540lbs bench press at the gym. No symptoms presented that day, but the following morning I woke up in extreme pain in my upper trapezius and upper back..over the next few weeks the pain subsided, but there was/is significant atrophy of the trap,lat,tricep, and upper pectoral muscles. There was a numb sensation around my elbow, and index and thumb of the same side. After two years the muscles will not grow back to the same size as the unaffected side, it feels as though the muscles just don't *fire* like it used to, nor can I make a full muscle, it feels soft. I had an MRI, which found slight bulging disc in c5,c6, with a slight herniation in c7, spinal Dr said they didn't feel that was enough to cause the symptoms I had. I'm a bit lost, my symptoms read as parsonage or thoracic outlet syndrome. I Know you can't diagnose me, but looking for any information or thoughts
This is the answer I was looking for. I worked out during a gym circuit session and woke up in the early hours with severe pain in BOTH arms. After many months of misdiagnoses I was told I have bilateral brachial neuritis! took me a long time to finally get nerve decompression surgery in both shoulders, infraspinatus and four other points on my body leaving some pretty horrid war scars. I am serving in the military and was refused compensation as they told me that the gym wasn't the cause, as there is no known cause! I have been trawling the internet, tried to speak with experts to establish a link between gym work, specifically lifting overhead so that my military discharge will be due to the cause of the military service. Any assistance would be great!
Always identical story, even with the minor disc issues but the doctor’s said it was not enough to cause that pain. Seems like there is a fair bit of us wish they could do a study.
Thank you doctor. When my shoulder pain started I was directe an orthopedic doctor and was diagnosed with a rotator cuff tear. After surgery and 4 months of therapy there was no improvement. Orthopedic was considering replacement surgery . Sent me for EMGsnd found nerve damage. Got referred to Mayo Clincfor a full work up, X-rays, EMG. Diagnosed as PTSas there was no previous injury to shoulder and Emg. Lost most use of arm and shoulder. Still have great hand strength. Hoping to start some more PT ( hydrotherapy) in the next few weeks and am really hoping it will help regain some more use of shoulder
@@rahelpost6979 never started physiotherapy and could not find a facility with hydrotherapy that had a lift to help me into the pool. We purchased a swim spa for the house and had an Ada pool lift installed. As I have no clue on excercises in the water, my goal is to move my arm around as much as possible while working on my balance. As far as mobility, if I’m lying on back, I can lift arm above head, but if sitting I can only raise arm about even with shoulder. I also throw wadded up paper into garbage can which has helped with the throwing motion.
@@opiegh3 thanks for replying! We're about the same level of mobility, just tested: can move my right arm above head when lying, but standing it's way below shoulder, not even 2/3 of a rectangle. Way to go! I decided to go to the public swimming pool and just move around free style. Starting tomorrow. Sigh. I also think it's better under water, because moving beyond that ankle really just feels impossible or wrong. Can't tell if it hurts or body just says neyyy
11 mo in. Post viral pts. Did pt for 8 mo. Twice week. And working out at home. Did emg today. Was told my nerves are most all within normal range or low normal. But I still can't raise my arm all the way up. Elbow won't straighten. And my lef shoulder when hands heald ro shoulder height to the sides is noticeably higher than the other side. And can't lift more than 3 lbs over head. About 4-5 lbs shoulder height. When will I be able to lift and straighten my arm. And twist and move as rotator cuff area seems damaged also. Pain stage lasted 10 weeks. Steroids at 8 weeks.
Hi, the shoulder joint is very complex, and you mention that the tendons of the rotator cuff may have been damaged, which may be a significant contributory factor. I'd suggest you see an orthopaedic shoulder specialist to better understand what's been damaged, how bad, and treatment options going forward. Bw Simon
I feel like I may have this but it was diagnosed as cervical radiculopathy. A few months after getting the Covid vaccine I developed the most intense pain in the back of my shoulder and shoulder blade then sent spasms down my lats and twitching in the nerve in my arm. The pain was absolutely unbearable. They did an MRI of my neck and found stenosis of some of the discs and did cervical disc replacement C5 through C7. I’m two years out from it. the pain was relieved with surgery. But the nerve still jumps and is irritated a lot of the time. Obviously, the stenosis was a problem, but I’m wondering if I developed inflammation from the vaccine the brought on parsonage turner syndrome? Thoughts?
Hi, if it was within 7-14 days after a vaccine, that can be possible, but not several months later. Have seen several people with silent covid who went on to have it. Bw Simon
I’m a 69 year old man, and I can attest to the excruciating pain involved with the onset of PTS. I guess I’m a rare case, since I’m now experiencing my 5 th episode, since 1979. I’ve had it twice, in each shoulder, affecting different muscles each time, with wasting and loss of strength and functions. Now, I’m experiencing my 3rd occurrence on the left side. Pain is in my neck, trapezius, deltoid, and forearm, all the way down to my wrist. One wrong move, and it feels like hot coals have been placed on the thumb side of that wrist. Absolutely dibilitating! I can also say that only heavy doses of opioids, and prednisone ease it at all, but it never goes away, until it’s run it’s course past the acute stage. I feel for all who suffer from this syndrome.
@@johannaheinrich3183 no I haven’t. I’ve been to several neurologists, neurosurgeons and rheumatologist, and never have they suggested that. I did have a bout with polymialgic rheumatica. That was horrible as well. Prednisone stopped that.
Just turned 60. Mine is heredity. My first bout of it left me with no bicep muscle in my right arm. Six years ago it hit my phrenic nerve which resulted in diaphragmatic muscle failure. Can't breathe while lying down. That was hell . It has many names.....but, it's a horrible affliction.
Thank you for such a thorough overview. To treat scapular winging that results from Parsonage Turner syndrome, a specialist has recommended nerve transfer of the intercostal nerve to the long thoracic nerve to re-supply innervation to the serratus anterior muscle. Do you have opinions, or is there new literature, on the efficacy of nerve transfer as a treatment for Brachial Neuritis?
Hi, that’s a very interesting question and hard for me to answer. I’m not peripheral nerve surgeon and it’s a very specialised field. From what I can see, it seems to be a newish technique (happy to stand corrected), and so you’re going to have to ask your surgeon what their experience and success rates are with it. The more traditional method is using the thoracodorsal nerve (I believe). Even if it’s technically feasible, specific factors including the degree of Serratus damage/weakness and the length of time you’ve had this can be limit the potential for muscle recovery. Suggest you also try asking Prof Tom Quick for his opinion (his contact details are easily googled). Bw Simon
Thank you for the video. I had the acute phase of IBN in July 2019 (worst pain of my life!) Now, I am working with a PT, but I find the exercises just make my shoulder hurt more than the usual dull ache. I know this is a self-limiting condition and will get better, but if I do not continue with therapy, will it cause permanent muscle weakness?
Hi Amanda - thanks! Unfortunately, I can't possibly advise specific people about their specific situations. If the PT is uncomfortable it would be worth discussing it with the physio guiding you at the moment or perhaps getting a second physio opinion. Best wishes for a speedy and good recovery ! Simon
I had a severe case at 19 and again, but even worse at 39 years old. I almost completely recovered the first time. There was the pain, the wasting, paralysis, numbness, etc.. The second time I was off work and suffered loads off treatments and pain clinics, off work for 2.5 years and now (at 55 years old) can only do every other day of office work which has led to divorce, loss of children, and economic hardships. The second attack brought more paralysis and CRPS II, so permanent severe pain, paralysis, and decalcification (e.g. disintegrated lacrimal glands, easily broken humerus then mended with titanium, secondary conditions due to a sedentary lifestyle - high BP, poor blood circulation, etc. Then you get so old that you are not a good investment...). My guess is you should slow down, but not stop therapy, manage your pain, but if you get PT only once, odds are in your favour for a solid recovery...even if it takes longer than others'.
I’ve gone through the hell of PTS, my ability to move my right arm has come back but the strength is next to nonexistent. Im doing acupuncture and regular gym exercises to try to get back what I’ve lost but it’s a long slow road I’m on. My question to you is are Steroids ever used in the recovery phase? Any unforeseen outcome or effect on the recovering nerves? I’m a right handed builder, my recovery is very much tied to my ability to have an income. Thanks for your help along the way. Cheers
Hi, not as far as I'm aware. Suggest you seek a local peripheral nerve surgeon opinion as there are operations that may be of help, particularly if it's stopping you from working. Bw! Simon
Thank you so much for sharing your video. I am dealing with the severe shoulder/arm pain on top of having flatback syndrome. I also have carpal tunnel syndrome. Thank God I am going to see a surgeon in 3 days. I have to hold my arm in an, "invisible sling" position most of the time, because if I barely move it, it's agonizing.It's agonizing to lay down, and try to sleep; also when breathing. I get shooting burning and other pain down my arm. This started months, ago. I fell off of the sidewalk and onto the parking lot 5 years, ago. I had no real issues except for skinned knee, hand and elbow. Than the shoulder pain came out of nowhere. I do not know if the fall is related. It is in my right shoulder. My right hand is the one I use. I fell and landed on my left side. So, it doesn't make sense that the trauma was on the left side, but now I have this practically useless right arm. It is hurting to type. I hope and pray for healing for each and every one of you. You are not alone. Keep the faith, and show your doctors articles about brachial neuritis. The better informed they are, the better off you'll be.
Thank you for this video. I am a female going through this right now. My doctor ruled out cervical radiculopathy as my mri has not changed since last time. Says it could be rotator cuff but that can't be the case as I lost the use of my Deltoid and that wouldn't happen if it was rotator cuff. I can't lift any weight with it. Deltoid is flat and not responding. Been in severe pain for weeks in the upper arm especially deltoid. Trying to get an emg scheduled. In the meantime, gabapentin has been my best friend.
Shalom, I want to share my experience. Maybe this will help you as a doctor or those who, like me, suffer from it. I have been struggling with this ailment for over 6 years. I'm 33 now, I had no injuries and my right (not working) hand hurts, I'm left-handed. It hurts in the armpit and is projected onto the palm of my hand. Initially, it started as a rare pain (once every few months) and today it is almost daily. I tried a lot of drugs and today only Diclafenac injections, Etoricoxib 120 (tab) and the best of all Lornoxicam 8mg (tab) really help. During the most severe seizures I take Percocet 10mg (tab). Such drugs as: "Diprospan, Phenobarbital, Lyrica, Pregabalin, Zaldiar, Elatrolet, Tramadex, Rokacet plus" Did not help at all or had a very-very minor effect. I also do not notice the effects of acupuncture, chiropractic, ostiopathy, physiotherapy and massage. Maybe there is something that I have not tried?
Thank you for sharing this information! I'm so fortunate to have a primary care physician who was able to immediately identify my pain as nerve related and refer me to a specialist who was quickly able to identify the possibility of Parsonage Turner Syndrome, which is easy to mistake for a rotator cuff issue, until the initial intense pain subsides and muscle weakness can be observed. The nerve pain experienced with PTS is fairly consistent and not related to shoulder movements or position, as would be the case with rotator cuff injury.
I’ve had similar issues from weight lifting injuries, non surgical in terms of reduction. The very same sequela but responds profoundly to physical therapy and massage therapy. The only difference was no sudden onset or presentation of pain or discomfort and it never followed a viral or bacterial infection. I believe in the sports medicine realm they refer to my situation as a “burner” or a “stinger” referring to a nerve or group of nerves that have become compressed or entrapped due to overdevelopment of muscles resulting in the nerves being compressed or entrapped. I often wonder how many people might be getting misdiagnosed with this as being PTS when in fact it is nothing more than a mechanical injury?
Thank you for a very informative video on this condition. I have been diagnosed with this condition but many months after the onset. I lived through the pain with over the counter relief but it was the weakness and muscle waisting of my tricep and chest muscle that prompted me to seek medical help. Im most concerned about the obvious muscle reduction as mentioned and want to know if a controlled administration of anabolic steroids would assist in the regeneration of the wasted muscles. I hope you can at least point me to info on this. Many thanks.
@@DrSimonFreilich thank you for your reply. I failed to mention that i no longer have any of the symptoms, it would appear that the nerves have repaired. Would the situation be the same regarding steroids If the nerve damage has repaired?
Can you opine on if a firefighter could potentially experience this due to all the heavy lifting on the job? Would acupuncture be helpful in lieu of pharmaceutical or surgical treatment?
I have been in the severe stage for many years with no easing of the pain, the more I do like writing a letter for example, then for days I am in pain. The pain is constant and I'm at a loss of how to cope with movement forward. I have had to change my job 4 times doing less and less that involves using my arm. Do you have any advice.
I’m pretty sure this is what happened to me about a month ago. Most of the pain went away after a few weeks but I’m now really going through the embarrassing loss of strength. The terrible thing is I can’t get seen for it cause we’re in the middle of the coronavirus so all I can do is look up information to see what I can do in the meantime. Thank you for this video.
Hi Jorgie, this is an increasing issue for everyone out there with all other health issues other than Covid19 (some equally important e.g. heart attacks, sepsis etc). Really impacting on all other service provision and nobody's talking about the masking effects. Bw Simon
Dr Simon Freilich Thank you. Yes I’m also an Army veteran but the VA as well as regular civilian hospitals basically only wanna see Covid 19 patients. What’s worse is that they can’t tell for sure because they aren’t testing anyone who isn’t basically dying. I hope this whole situation gets better soon so we can all do our best to return to as normally possible. Thank you for your reply!
Thank you. This is very informative. I think this may be what my father has, however, he has seen multiple doctors and no one has been able to diagnose him. He has become increasingly frustrated and its been about 6 or 7 months now dealing with this.
Is random intense making the shoulder very hot a symptom? I’m not sure I have it, but that will randomly happen from time to time. I think my symptoms align more with the rotator cuff. I am 16 by the way.
Thank you I have similar symptoms in night side and nothing my gp has given me just pain killers I also suffer keinboch disease stage 2 in left wrist and its same pain level but i can Handel KD pain
I’m female 25. It’s been 4 yrs I guess. I met a doc last year but I didn’t feel any better so I stopped meeting him. Pain is unbearable sometimes. Lasts for hours. After the pain stops, it’s like when I move my arm, pain comes back again slightly and feel weak while moving my arm. I usually feel intense pain when I work, lift stuff or when I sit for more than 15mts doing nothing. My symptoms match with this disease 100% so I’m guessing it’s brachial neauritis. I can’t explain how painful it is. It’s usually on my right shoulder but at times it radiates to left shoulder or maybe both but mostly right. It’s an intense needle prick pain mostly. Please help what do I need to do.
I also have this disorder and I have been reading up on it. I came across a study where an individual had terrible pain like you and they were able to do a surgery so you stop feeling the pain from the damaged nerve. You should look into it for sure
Hi Simon, I saw Professor McCombe in Brisbane Australia re Axonal Variant GBS and she said if IV Ig didn’t work that Ritixumab wouldn’t either. I’m starting to aspirate . I know as I cough up saliva only and know I have a lower lobe consolidation. I still have a strong cough.
Hi, I'm sorry to hear that. Its a very important question regarding a rare situation which is indeed difficult to treat. As an idea, why don't you copy and paste this question into the video dealing specifically with GBS and perhaps other people can pick up on it over there and share their experiences? Bw Simon
Hey I'm curious to know if you've ever experienced this with wheelchair users or long term crutches? this concept was recently proposed by my GP. While he has only every encountered this diagnosis once, it was suggested and is currently being explored. As a long term (crutches 20+ years) and (4 year) wheelchair user, in November 2019 while all the symptoms outlined in your video have been present for some time, during a single handed transfer (RHS) moving a 12kg wheelchair to the passenger side of a vehicle symptoms became severe. From neck, to shoulder to forearm and bizarre nerve responses it seems similar but have found no other cases to link it to.
Hi Grant, not as far as I'm aware of. However, there certainly are neuropathies linked to wheelchairs (cubital tunnel) and crutch use (Median Neuropathies and Radial 'Crutch' Palsies) and one can of course have combinations of those too. Bw Simon
I'm fairly certain this is what I'm dealing with. The state hospital have advised I get another rotator cuff operation to shorten ligaments but I am apprehensive as the first operation never actually helped me, if anything my shoulder is far worse for it 9 years later. I recently experienced an injury but the pain only began to reach unbearable levels almost a month after my fall. I've got a right winged scapula and experience episodes of intense spasms on my arm, neck and even legs when it's bad. I have about 20% of my right arm motion and cannot take on basic tasks without serious pain killers. Now looking for a specialist who may recognize this syndrome in South Africa.
cameron zuccarelli i’m living here in New York I just read what you wrote after watching this video. I’ve suffered with two massive rotator cuff tears and had six unsuccessful shoulder surgeries yes six they all failed I’m going through the same thing with my left shoulder as you are with yours both of my shoulders are affected but my left shoulder is so much worse I also have chronic pain in my latissimus muscle my triceps along with my deltoid and even in my pectoral muscle it sucks I’m supposed to go in for a reverse shoulder replacement on the 24th I’ve taken a 5 mg Oxsee cotton this morning and I’m very careful with the medication it did nothing for me except for maybe taking 10% of the Pain away I’m sorry you’re suffering but you’re not alone I wish I wasn’t this person I have a hard time trying to comprehend how this happened to me but I did I wish you only the best of luck
Hi Draginja, Diabetes can cause issues to the nerves of the Brachial Plexus but it's a different Clinical entity to Parsonage Turner and has its own specific characteristics. Bw Simon
Hello, I began experiencing symptoms 8 months ago when I was only 17. I went to many different kinds of doctors and was lucky to have had a somewhat quick diagnosis (4 months). I am currently on a waitlist to see a neurologist to determine severity etc. but unfortunately she can't get me in for a couple of months. I have always been very involved in sports specifically gymnastics and recently swimming. I have been looking for explanations and answers for a while and I do have a couple questions about parsonage turners and specifically my case: Because my young age what does that mean for my future and reoccurring symptoms and involvement in frequent physical activity? Is there any treatment or way to prevent another episode? Can nerve damage occur if treatment is not received? And because of my young age compared to most cases, is there a way to test for the genetic form of the condition and would this be a helpful thing to do? Also, is there anything I should or shouldn't do while waiting for my appointment?
Hi Sophie - firstly, wherever you are in the world, the likelihood of seeing a neurologist in the near future is going to be low, due to service changes and needs with this Coronavirus. Here are a couple of answers at least, in the meantime. In general, younger people tend to do better. How much better will depend on how bad things were but that needs a direct physical assessment. There’s no treatment other than physiotherapist that can be given now. Recurrence is unlikely but there is no specific preventative thing to be doing or avoid doing . Regarding genetic testing and ongoing sports activity you’ll have to wait to discuss that with your neurologist. Stay healthy in the meantime, avoid smoking or alcohol (not suggesting you do have them but basically any potential toxins) and most of all, stay at home with this Coronavirus. Bw Simon
Great video. I have been having symptoms of extreme weakness and atrophy in my bicep, hands, wrists and shoulder, but no pain. If it is PTS, how long does it usually take to recover and is it best to rest it or continue working out? Thnaks
Hi, I hope you'll understand that I can't answer these types of individual questions and that your going to have to see and discuss this with your local doctors/specialists. Bw though! Simon.
Thank you Dr Simon Freilich for posting this video. My daughter [5 year old] she has had a flu for two weeks ..then one morning she found out that she has severed pain on her right shoulder she couldn't move her arm.. we took her Emergency they scan her chest n told us she has pneumonia .. they cured her pneumonia but didn't know what has happened to her right shoulder... during 6 nights at the hospital i have to help her with everything because she couldn't use her right arm.. after we went through so many doctors and specialists finally they told us she has Brachial Neuritis.. they did a MRI scan and Conductor test on her right arms... but they told us they couldn't see anything block/suppress on the nerves ...hence they told us they can't do anything... they preferred us to the Orthopedic [ Brachial Plexus surgeon ] we went through a nerve grafting on her right shoulder where he took a small branch of radian nerve to join with auxiliary nerve so hopefully she can lift up her arm ..after 4months of surgery she still can't lift up her arm however we can see just little bit of improve with her right arm.. .. May I have few questions... hopefully you can help us 1) is there any technology or device that can help the surgeon to locate the damage/good nerves ? [she has been through the conductor test with the neurologist but the report was too vague] 2) what are the nerves do you require to lift up your right arms? we hope that we can speak to someone who has similar issue as my daughter so i can learn through their experience ...thank you all
Hi Trieu - I'm sorry to hear of your daughters situation. A couple of things - I can't ever really get into specifics, and paediatric peripheral nerve surgery is a highly specialized field and so decisions regarding upon who to operate, when to operate and how to operate are beyond what can be discussed on a web forum as they are very patient specific. Current evaluating technologies (and for the foreseeable future) are MRI and Nerve Conduction studies. The main nerve pertinent to raising the arm is indeed the Axillary nerve to the Deltoid muscle. There are other nerve/muscle groups involved, but are less important. More importantly, 4 months is still on the early side of things to know whether or not a nerve graft has been successful. I'm assuming that your daughter is being seen in a specialized center - and that she is being actively followed up. Often, it can take around 6-8 months to start seeing benefits - so hang in there, and children are much better at recovering from nerve issues than adults! I'd also suggest that you speak with the surgical team to see what their experiences are of timings of recovery and whether or not they might be able to put you in touch with other families that have gone through something similar (but might be tricky to arrange due to confidentiality issues). Wishing your daughter a full and speedy recovery, Simon
@@DrSimonFreilich thank you for your prompt reply. I feel happier when u tell me to wait for little longer to see the result of the operation... May i ask u something in advance for her? after the operation ..how long do u need to wait before u can perform a conductor test? or may go for another nerve transfer ? we were reading there are any patients that can recover after 2-3 years... we hope that will be the case for our daughter ...
I am doing research on BN because I believe I might have it. Does it cause loss of range of motion? For instance not being able to lift my arm? If left untreated for five months could it cause thoracic outlet syndrome?
Hi Aubrey, yes BN can impair range of motion depending upon which muscles are affected. I'm not aware of ToS happening as a secondary outcome. Bw Simon
I was diagnosed with it and I can’t lift my arm higher than 90 degrees unless I rotate my arm so it sticks out to the side. I also have scapular winging which seems common with the loss of range of motion
So happy I found this. I've been suffering for 2 months. I had sudden onset of pain. Easy a 9 out of 10 and I'm good with pain. First two weeks were horrendous and it's been slowly subsiding since. This started on 3rd Jan 22. And the pain is all but gone. I have pins and needles in the tips of a few fingers still and weakness in the shoulder is still present. I have been diagnosed with carpal tunnel and I knew it wasn't this. I'm 100% sure it's this issue and will be pressing my doctor to look into this. Thank you so much.
The doctors think I have it, I’ve been through the hell pain already now it’s just a deltoid that won’t move and the massive muscle loss. My pain was a slow grow over a 4 week period, I noticed it the day I woke up after a minor surgery on my leg. Is this normal the slow onset of the pain? Any one have a similar experience?
Thanks for the video, I’ve just been diagnosed with Brachial Neuritis it’s unfortunate to say the least. The onset of mine is odd, it started with a minor surgery closure of a cut on my left shin, when I woke from being put under I noticed my shoulder was aching. This pain slowly grew, stayed manageable, then 5 weeks later shot up to a 10 out of 10 for 2 weeks and then like a light being switched off I felt nothing, all the pain was gone. I’ve been left with a right deltoid muscle that I have no ability to move or feel. The atrophy is heartbreaking, im a right handed builder. Is this a normal onset of the condition? Unfortunately my left side is now experiencing a similar but less intense morning pain to what the right side started as….. MRI and X-ray show no obvious issues. Any thoughts? Thanks
Hi, I'm sorry to hear this. Occasionally, it can have an insidious onset like this. I can't really comment about the other shoulder, but it might be strained taking over from the other side rather than the same process occurring. Suggest you take it forward with Neurophysiology tests to be sure. Bw Simon
It’s been 8 months now and I’ve regained just about full mobility with my arm but I’ve been left with next to no strength. I’m a right handed builder. Would Anabolic Steroids be an option to help with the recovery time? Has it ever been used? Thanks for your help
