Coming to terms
 

Hello everyone, I am here looking for advice. I am coming to terms with my current condition, and I'm not quite sure what to do next. I'm a musician and suffered an injury to my left arm while performing last summer. Diagnosed with cubital tunnel, I couldn't believe it was that simple. In October my right shoulder gave out with a bicep tendinitis, and since then my life has changed forever. I wouldn't get better and in early DecemberI flew out of the country to do imaging and to see a lot of specialists. After baffling all the doctors, the physical therapist suspected thoracic outlet syndrome, nervous and possibly with vascular involvement. I believe she was quite right. Since then I have been working on my posture, but I am always in pain 5-8 with constant irritation of my nerves under my right clavicle and into my armpit. It hurts just to walk. I am based in Reno Nevada and I don't know of any doctors to see here, alsoThe health care situation the state is amazing, since I need to wait two months to see a neurologist. I have no blood flow to my arms when I raise them or doing other maneuvers. I have been going to physical therapy for about three weeks, but see very little if no improvement (very gentle manual therapy). I'm considering traveling out of town, maybe to Stanford or even to Los Angeles to see specialists there, but i'm sure it's going to take weeks to be seen. Do people know of any physical therapists in Northern California? Sometimes I'm in so much pain I just want to going to emergency room, but I know how rare this condition is and also wondering should travel out of town. Don't know if anyone has any advice, but I needed to post this. Thank you everyone for reading. I'm still coming to terms and wonder if I should consider surgery in my condition to save my music career... Anyway. Thank you everyone

Dacello, hello and welcome to Neurotalk Support Groups. :Wave-Hello:

I am so sorry you have had to find your way here but you will find it a good place for sharing and support. Nerve issues can be painful and limiting as many of of us know.

It sounds like you have already had a bit of workup and that is good. However, nerve issues don't always show up on imaging or even necessarily in conduction testing. Peripheral nerve problems are kind of an "orphan specialty" according to one of the big surgeons in this area, Dr. Susan Mackinnon.

For TOS and even the cubital nerve issue which may have an entrapment or injury that can't be seen, it may be necessary to travel to get the care you need. Hopefully you can find what you need closer to home but if you don't feel you are getting anywhere go ahead and start inquiries so you have a plan. You can always cancel appointments or change the plan later if you improve. Often with nerve problems appointments can be gotten quickly when the need is urgent. Be sure to tell staff about pain and any motor problems or atrophy if you have them. There is an exceptional neurosurgery program at UC San Diego that treats both peripheral nerve and TOS if you don't respond to therapy. They are on the cutting edge for a lot of research and treatment. http://neurosurgery.ucsd.edu/conditions-treated/

I encourage you to hang in there and don't give up. Nerve injury issues take time but there is hope. There are some great specialists out there. If you don't find them at home and you can pull off the travel, by all means do so. Get the best healthcare you can find and get back to your music.

Please let us know what they find and how you're doing. You are not alone in this. I hope you find relief and answers soon, :hug:

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I'm guessing you did a lot of practising as well as performing.
Did you have any arm issues before this acute injury?
What instrument is it? just curious..
Are you taking time off from that activity now?

I don't know how you feel about chiropractic ( expert, highly skilled etc) of course.
But I will say I lucked out finding the one I went to, he helped me the most and much quicker than PT. I had been to 10 PTs, of varying skill levels, only 2 really stood out, one was a teacher of PT, and one was after I had learned a lot about TOS myself, so I kind of guided him by sharing what the other PT did..(top rib mobilisation).
But chiropractic might be needed at first , " if your foundation is crooked you can't have a strong house"... that is kind of my way to explain it..

First I suggest you explore our TOS sticky threads and learn as much as you can.
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread125577.html
helpful passive posture ideas-
http://neurotalk.psychcentral.com/album.php?albumid=422

Then use the search tool to find specific things, perhaps chiropractor, therapy, posture, state/city etc. searches here require 4 letters/numbers.

If you can find a really good DC or advanced PT locally, that is in the healer category.. IE uses many techniques and modalities , what ever is needed to help you heal & improve.. but no weird gimmicks or set plan of treatment.. they have to adjust to what improves/helps you and not any rigid plan they set. No weights, hand bikes, etc at all until pain is way down... or maybe never..

Thank you everyone for your replies. To be honest I am not sure what to do. I have been going to PT as I mentioned, for a month, and I also have been seeing a chiropractor. I cannot spend more than 10 to 15 minutes standing after I wake up. And have seen very little if no improvement... And as I'm writing this I'm in excruciating pain. Spending most days like this. Most of my pain is right under my clavicle - it feels like somebody's putting a blowtorch to that spot and I think my skin is puffy there. I am thinking even of going to the ER. Is this kind of pain normal with Thoracic outlet syndrome? Most people talk about numbness and tingling and weakness. I am experiencing the burning deep pain. Feel like I if I only could have some sort of numbing injection into that one spot, everything would be great. ...

Dacello,

I am concerned about your pain. While many soft tissue problems like you've had can cause serious discomfort (I get a back strain every now and then beside my clavicle so intense I always think something is horribly wrong with me....) they will usually respond to rest, anti-inflammatories, muscle relaxants like flexeril, work like Active Release Therapy, etc....

If your pain is so intense it impacts you to the point of not functioning consider going back to any doctors you have in town or getting a fresh pair of eyes on the case. Physical medicine and rehabilitation doctors are often very helpful as is pain management for a start. If nothing else they can help with some meds to help you be more comfortable until you get this figured out.

Hoping you feel better soon, :hug:

I know you can't type a lot... I don't know what things PT is doing for you... does DC "only" do adjusting?

Oh if you have a laptop with mic or smart phone , use the voice dictation to "write" your post.

But if the PT & the DC aren't improving things or lessening your pain.. I'd seek out others that might be more skilled..
Sometime you will find very very good ones, but you may have to try a few before you find the gems.

Poor PT will mess you up more, please be careful.
Do not do anything if it makes you hurt more.
And if you are in high pain, they should only be doing pain relieving things for you.
like ultrasound, stim, heat , massage, passive gentle stretches.

Does the PT or DC address the collarbone at all?
Maybe ask for top rib check/rib mobilisations..

There are injections , I'm not sure which kind of MDs to suggest you look for for those.
Littlepaw suggested pain management or Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists.
Those are a good places to start.

A member has made a site with some TOS specialists in CA listed.
http://tossociety.org/certifiedTOSSmemberlist.html

Can you mention what you do in PT and what they diagnosed you with? My understanding is the pt should have said "rounded shoulders so this exercise" etc.

Hello everyone, thank you so much for the responses.

At first I saw a PT which gave me a lot of shoulder stretches, that definitely didn't improve me at all. I would end up with a lot of pain. Now I'm seeing a different PT who is doing a lot of manual therapy, muscle release, and gentle stretching. I have seen a chiropractor recently who adjusted me and also went through me like like a locomotive and perhaps this flared me up.

I also saw Steve who used to work with Peter Edgelow, and have been doing pelvic breathing for about a week and a half. Don't see much improvement yet.

However, for the last month and a half or so I have been living with excruciating pain, which tells me the nerve is inflamed perhaps right under my clavicle. Is it possible to inflame a nerve with manual therapy? And of course there is an impingement component. I wonder if I have something called Brachial neuritis. And to be honest don't really know how to get out of this. The only thing that makes me better is lying still on my back. The pain in my clavicle is debilitating and really my only symptom in the right arm... When it gets bad, which is every day towards the evening it shoots all the way into the pinky and the fourth finger.
I can spend about five minutes walking before it gets worse and worse

Dacello,

It seems like practically anything can irritate a nerve. They are just so delicate and prone to injury. I have had good results with manual therapy in my foot and ankle but of course the practitioner's skill is paramount and that doesn't mean it's the right thing for YOU. My personal opinion is that feeling you got run through by a train after chiropractic is not good or helpful. I say this having seen a few chiro in my life. Chiro is great but the treatment approach must be a good fit. My guy is pretty careful with me and does Active Release Therapy in addition to gentle manipulation. For myself, treatment that is too aggressive can aggravate or cause other problems that take days to resolve.

You said you have some swelling there at the clavicle and I wonder if there is a muscle impingement or imbalance. Swelling by itself will aggravate a nerve. When I strain my back I end up with one awful spot that has piercing pain and actually buzzes from the nerves being pressed on. I have found flexiril for a few nights helpful for getting things to relax so that I can start working them gently again. Do you get any help from cool packs to reduce swelling? I don't like ice myself but just put the gel packs in the fridge...

Since you are having so much pain, I'd really consider getting a consult with an MD. A good PM&R or pain management doc may have something to add and could potentially do a trigger point injection that might help. Just something to consider. I know it's hard when what you're doing isn't working and you need relief.

:hug:

Thank you Littlepaw for the encouragement and the advice.

I know this is really a question for the doctors, and I am currently scheduling appointments as recommended by all of you, here and there, but I wonder if in my severe case I am definitely looking at a surgery? What I mean is, if I have arterial and venous involvement (my hands are red and spotty when down, and I have no pulse in arms when elevated, or extended, or behind my back), plus he severe nerve involvement... if I ever want to play my instrument again... Seems pretty inevitable?

I have been playing since a little kid, for many hours a day, and of course this has been adding up. Now, I feel very lost because it is my living.

I guess I am asking about how successful are people in working out say with Edgelow protocol or other modalities (Feldenkrais, ART, massage, etc.) to regain complete "normalcy" or at least functionality. Or do they always go through the knife. In our music world the concept of surgery is a big no-no, but at the same time, one doesn't want to delay if the injury is fresh... (Or kind of)...

Dacello,

I am glad you are getting some consults. It think it will help you decide what direction to go and has the potential to give you some relief for now. Surgery is a big decision and always has the potential for unexpected outcomes no matter how good the surgeon or how perfect the procedure. Getting more info about TOS and trying some other conservative measures first is a sound plan. You will know in time what you need to do. Nerves do take time to settle down once they have had an insult it can be hard to make a call. It can also be hard to figure out just what the problem is. I chose to have a peripheral nerve repair and it was the right thing for me but I was balled up on the couch from 9 am on and had exhausted all possibilities.

Find the best specialists you can, they have seen the most presentations and will have the most experience understanding what you're going though. I know it is scary having your livelihood compromised, especially one that is so very special. I hope you get what you need very soon.

Sending extra hugs, :hug:

Try Edgelow protocol, many hours a day, it can work miracles, and since you have not had trauma, there is a very very good chance you will recover fast.

Thank you all! I will work hard and update on my progress. :). So happy that there are people out there that help! :) :grouphug:

Best exercise I have found is roll up a towel long ways. It should be as long as from your neck to your hips. Lay down on a hard surface, I do it in the floor, and place the towel under your back and roll over onto the towel placing the towel right on your spine. Then force your shoulders to touch the floor.

You'll find it in this video.

https://www.youtube.com/watch?v=Z4aXRj0uIj4

It really helps me when I have a flair up. If you have vascular envolvement, you lower arm should be swollen more than the other. Wearing a compression sleeve will help. I wear one everyday.

Hello everyone,

It has been more than a year since I posted on the forums but I wanted to update you on my progress. Now, I know that some of what I am going to say is controversial, but I thought it would be important to share nonetheless.

Since I last posted (Feb 2016) I went to see both Dr. Freischlag at UC Davis and also Dr. Thompson at Barnes Jewish. Both of them diagnosed me with bilateral TOS and recommended a trial of PT - 6 weeks in the case of Dr. Thompson, who was actually really pessimistic about my options in conservative treatment, since I was already doing PT 3 times a week for 4 months without any improvement.
I tried Edgelow protocol for 2 months only getting worse to the point that I couldn't do the pelvic tilting - pinched a nerve in my back.... Anyway....

I was desperate. Workman comp case, healthcare access in America in general, finding the best surgeon, inability to play my instrument. And no solution in sight.

Then I kept reading online and kept finding stories of people recovering and the mention of one name... This is where the controversial aspect begins. The name is Dr. John Sarno. I first stumbled upon him while listening to Sharon Butler's tapes for her stretching protocol (which gave me minimal improvemt over 4 months). If you haven't heard of him, you might want to check his controversial claims of mind-over-body connections with multiple sources of pain - from common tendinitis to back pain to nerve pinching etc. And a repudiation of structural diagnosis.

Now, at first I didn't buy it, but my physical therapist kept talking about stress and the book (Mindbody Prescription by Sarno) stuck a cord with me...

Long story short - last July I plunged into Sarno's method. Which basically says ignore the pain and resume all physical activities. So here is my report:

As you know, if you read my posts, I was in the most dire and desperate of situations, and by June, weeks away from a massive bi-lateral surgery. Yet I committed to Sarno's method, stopped all physical modalities, and tried to resume all normal activity. I started journaling like crazy and uncovered unbelievable amount of insecurity and stress in my mind compounded by pain and inability to play. This made me even more convinced and actually angry. I yelled at myself and pushed against the pain.

I started playing my instrument (the cello) back in July again, couldn't play for more than a minute at the time. Heck, I couldn't even sit to type at the computer for more than 30 seconds without overwhelming pain....

Well, I am happy to report that by December I managed to sustain a national tour. In February I performed a recital of complete Bach works for cello - 3 hours and 20 minutes of music by myself with two 20 minute breaks. And just last week I returned from another 3-week performance tour, which included 14 concerts in the US and Canada, countless rehearsals and many hours on airplanes, carrying my cello, suitcases, and briefcases.

I still have random symptoms but I do not care and I ignore them - and the more I do the less they appear. Since I have my whole life back and I worry much less about the future. I consider myself fully recovered - I do not do any therapy and I run, walk, play the cello, type on the computer and enjoy life as much as I could. Also, I am a better cellist than ever before - I worry much less about making mistakes and that makes me play much better

I couldn't ever imagine that this would happen after all the darkness through which I, and my wife have been. And even now I am writing this message with certain trepidation, with that nagging "don't jinx it". But it's my stupid personality. I know how crazy this must sound to you but it worked. And I have been diagnosed by two leading physicians and done countless physical modalities to no avail: PT, acupuncture, chiropractic, massage....

So, here you go! You can add me to the success stories! Love and hope to all!
*

I'm glad you found your answer...
I agree the mind can do very good things , as well as bad things to us..

Hello everyone,

Just wanted to on one hand say hi after a two-year silence and wish everyone good health. I also want to share again my gratitude, since I still remember this forum as a place that helped me a lot, to know that I am not alone, that there are others who are going through hardship and who are willing to give good advice and help.

I also want to give an update on my condition. When I was diagnosed with TOS in 2016 by both Dr. Freischlag and Dr. Thompson I came here and realized that people who recover, almost never post and someone said: “of course, those that are well, no longer come here.” So I wanted to tell you that now, three years and 2 months after my diagnosis, and two years and 11 months since the beginning of my recovery, I still am doing well (and I still come here occasionally).

My symptoms are completely resolved, and while two years ago (in 2017, when I posted last) I still had bothersome issues, such as burning and tingling and occasional pain of level 2-3, today I have no symptoms whatsoever. The condition has completely resolved and I have no limitations in playing my instrument, typing on the computer, or lifting heavy objects.

I just wanted to post this because I know there are a lot of people - I used to be one of them - who come here looking for answers, and I wanted to let them know that not all is lost and that there are people, like myself, who achieve recovery even when all odds seem to be against it! And once again to thank all the kind people of this forum, who keep helping with advice and kind words those who are in need.

Hey! Glad you are doing well. Mind sharing what tools helped your recovery? Surgery, physical therapy etc.

I have no real suggestions for you, as I don't know much medically and/or about your situation. I was reading the thread to see if anyone suggested anything for you that I might try for my condition. That said, you made one comment about wishing you could just get relief "in that one spot" and I thought of my Lidocaine patches, and how when one area or another is or has been screaming, I put a patch there to calm what I feel down. Also, I have used a medication, Voltaren Gel, which calms things down in areas where nerve pain presents. I know Voltaren isn't for nerves, but if the nerves are "angry" then the muscles, ligaments, tendons and every other thing in the area is also angry, tight, and aching with pain in it. My dx is CRPS, and Fibro, but my experience is that it's not "just nerve pain" ever with me.

There is an off label (to say the least) use of a thing called DMSO, which is literally sold at feed and seed stores. I use it sometimes in areas that are "screaming" and it does something for me. That said, I can't use it on my shoulders or in really tender places. There is a lot on the internet about human use of DMSO, and it's not approved by the FDA....but lots of things aren't, and my experience with DMSO is positive, so I want to be able to say what I do with particularly throbbing areas on my body. I've even mixed the Voltaren and DMSO to get the Voltaren down in there, so to speak. Again, this is my home remedy spot treatment to go after a particularly painful place.

All the best and I hope resolution is found for your condition so that you can continue to do what you love. Surely with time and finding the right doctors, you will get the resolution you seek. I pray, and will pray for that.

Thank you CRPSinSC!

I don't know if you read my thread, but my condition is actually fully resolved. I am fully recovered and no longer sick. That is why I posted my message a few days ago. :) Thank you so much for your kind thoughts!

Hi DarKnight,

Everything that I did to recover was listed in my post from 2017 with all the details! I wish you a speedy road to being pain free too!

I am fairly new here and haven't gotten the hang of recognizing when there are more pages to read.
I saw your reply and figured out to go backwards this morning.
What a great story. I am so happy to hear you've recovered.
I have Sarno's book.....need to read it again maybe?

This is something I am looking into as well. Look up Alan Watts muscular tension. An interesting take on muscular tension in our bodies.. I am trying to relax. Also take a look at medications you are taking and their side effects on askapatient.com lots of medications you wouldn't suspect like allergy medications can cause muscle tension.. I have gone off all my medication and I am going to see where this takes me in a couple of months.. hope you are doing well.