Sorry spelling. Burning pain. My phone puts anything. Sorry
This is interesting. I had a nearly fatal car crash in 2004. My injuries were mainly broken bones but when I awoke from the coma they put me in I quickly realized that I could not move my left arm at all and I could only move my right fingers. My right arm healed pretty quickly and I regained function within a few weeks. It was a different story on the left, It took over 2 years of physical therapy to regain full fuction. I now realize after 12 years the symptoms that I was having were nerve pain. I thought it was just because my elbow was broke and the significant injury to my left arm. I have become fully functional but for some reason in January of this year I starting having significant pain in my middle finger that slowly got worse and started moving up my arm. I have seen several doctors and read alot about TOS. My physical therapist agrees with me that what i have is most certainly TOS. The location of the pain and the symptoms match to a T. The burning pain is in the front and back of my shoulder, under my colar bone. The nerve pain is controlled with Gabipentin most of the time but I keep having to increase my dosage to keep up with it. I pray to find a doctor that cares enough to help me and not just medicate me. I am in the USA so chances of that is slim.
Flip you been unlucky! They say that TOS can be caused by accident. Have you had nerve tests done??? I am in UK. Don't rush in till you get all the facts and tests done.
Yes I have a EMG study done with normal results, I also have had a cervical MRI and a MRI of my brachiel plexus done with normal results as well. They did see arthritus in my neck but nothing that would account for my symptoms. We also did another nerve test (Somatosensory evoked potentials (SEP)) and those results were also normal. No test results so far have substantiated the pain that I am having. I really think that I have scar tissue that has enveloped my brachial plexus and that is what is causing all of these symptoms. I just wish there would be a diagnosis so I can figure out if it is even treatable.
Yes this must be driving you crazy! Have they done 3d x rays because that's what showed up my cervical ribs.
Well in 6 months after the surgery you are glad you did it. But it's a really long recovery. I said to my husband this time, it was so hard because I knew what to expect this time. And I am a 42 year old fit and healthy woman. It's hard to go in feeling ok and leave knowing that the pain is going to be rotten for a few months. That part is hard. But my first side had no pulse whatsoever and after the surgery I had a strong pluse and a whole lot less pain eventually. This time my pulse was gone when my arm was up and now it's strong. You have to decide whether there is harm to the arteries at this point. I had a risk of stroke or hardening of the artery later on. So it had to be done. It's just a very long road of recovery. But it's more manageable. I'm hurting but haven't taken a pain med yet today. By tonight I will have to. That I will be happy to see go. But it's how it will affect those arteries later on. My other alternative was if the artery hardened eventually its a 10 hour artery replacement from your leg. And I didn't want that.
I just had my 2nd one done 3.5 weeks ago. Pain free? Probably a coupl to three months. Totally free in 6 months. The site where the rib is removed still swells and is sore even now. Night times are still awful because you just can't get comfortable. It's rougher than I anticipated!
No I have not had that x-ray yet. I will talk to my doctor about that. Thank you for all of your information. I feel better prepared.
All the very best. Please keep updated. I know how you you feel.
Wendy
Hi Everyone,
I was diagonsed with Thoracic Outlet Syndrome 30 years ago when the doctors found that I had bilateral cervical ribs and that my transverse process bones on both sides were three times longer than they were supposed to be. I lived with this pain on both sides off and on for 30 years. I had physiotherapy, nerve blocks, injections, medications and more. My local doctors also told me not to have any surgery back then because the surgery caused scar tissue which would cause the same symptoms as the bones which were being removed. Fast forward 30 years and there is now a Thoracic Outlet Syndrome Center at Mass General Hospital in Boston, MA USA. (I live in USA) My original doctor, the one that said don't have the surgery, finally referred me to this doctor in Boston.
I went to Boston and had 3D imaging studies and they found that I had to have the cervical rib removal and transverse process reduction surgery on the left because my subclavian artery was being 90% blocked by the rib. I am now 5 months post surgery. I had a great deal of scar tissue covering my scalene muscles, the cervical rib and my brachial plexus nerves. It took four hours for my doc to peel the scar tissue away from my brachial plexus. Needless to say my nerves were not very happy. I was told that it would take 18 months for the nerves to fully heal. The good thing was that I didn't have to have my first rib removed as they had planned on. My surgeon said that after he cleaned up all of the scar tissue there was plenty of room in there for recovery. I couldn't take gabapentin because I had a really bad reaction to it so I take topamax (topirimate)2x/day, and cymbalta (duloxetine), as well as pain meds. I was progressing until about 3 months post op and then started to develop chest pain. In the beginning it wasn't bad and I thought it was part of the recovery, but it got worse.
Now at 5 months post op I am having another procedure that will help my recovery. It is only day surgery for a pectoral minor tendon release. About a month ago I started to have intense spasming of my pectoral muscles in my chest which is causing my scapula to wing in the back, and also causing rounding of my shoulders. So every time I put my shoulders back and stand or sit straight, my pectoral in the front spasms. If I sit in a high-back chair or roll onto my back in bed, both of which push my scapula into my back, my whole arm starts to go numb and I get the symptoms in my hand that I got before surgery. Since my surgery my index and middle fingers have been numb on the inside. This is going to sound weird, but they are numb on the inside and super sensitive on the outside, and always cold. Anyway this surgery is going to release my pectoral muscle tendon so it won't pull every time I straighten my shoulders. My doctors have told me that 40% of the patients with TOS have to have this surgery as well as the surgery at the scalenes or above the collarbone. Some people with TOS only need this tendon release surgery if they only have pain below the collarbone.
I hope this information has been helpful to someone out there. I am not looking forward to this next procedure. If there is anyone out there that has had this procedure I would really like some input. I know that the surgeon is going in through my armpit this time, so I'm not looking forward to the uncomfortable first couple of weeks of recovery. I do also know that if I got through the last surgery I can get through anything because that was really rough. My surgeon also said that on a level of 1 - 10 my first surgery was a 10 and this one is going to be a 1.
I just had thoracic outlook decompression surgery Tuesday in Boston. I am a breast cancer survivor (2014) and needed chemo and Radiaton on my affected side. I had been hospiazed
Hospitalized 2 times in April for blood clots. I hope this rib removal surgery will free up space so I don't get clots anymore. Still pretty stiff but it's better than yesterday .
Hi Wendy, Could you tell me where you are in the UK or if you know anywhere I can find a consultant with an expertise in TOS please? I'm in the NE and my physio has diagnosed me with TOS. At the moment I am in constant pain and am losing the dexterity in my thumb. I also have reddening of my face and the sides of my neck -was sent to a dermatologist but she said it wasn't skin related but may be vascular...I know it's vascular as it worsens positionally - just like the neck/throat/shoulder pain. I'm not over confident in the NHS following an accident years ago and have various drug allergies (nerve block carrier among them 😔 so drug treatments are often unavailable to me...the lack of function is driving me nuts and physio is only aggravating my symptoms.
Oops sorry I didn't mean to put in a winky face...it's all gone a bit 'Pete Tong' 🙄 Thanks in advance for any time...how are you doing now?
I have now had a steroid injection in c6 to eliminate the possibility that the pain was coming from my neck (the injection did not relieve any pain) and 3 weeks ago i had botox injections in my scalene muscles. So far i can not say I have had any pain relief. I truly do not know what to do. I have had 2 doctors give up on me and say they cant figure it out and shove me off on another doctor. I am now with a pain management doctor. I need to see someone that specializes in TOS but the only doctorI can find is in Saint Louis and isnt accepting any new patients. Any suggestions would be great.
So sorry to hear you are still in pain. I'm in the dark myself, and I am in the UK, I've seen more specialists than I can count over the years and it's only now that the physio I see has diagnosed me with TOS (I also have an existing neck issue...allergic to the local anaesthetic carrier for steroid injections...found this out when they gave me one and I had an anaphylactic shock!). I do hope someone can point you in the right direction Melissa. It's not much but my thoughts are with you.
Hi again, I was just looking at the recommended site above, Mr Rob Patterson at the Cherington Practice in the UK. There is a testimonial from: Dr Hugh Gelabert, MD
Professor of Surgery, University of California, Los Angeles School of Medicine I know it's a long shot, and you may not be anywhere near there, but it may be worth contacting him to see if he knows anyone near to you who specialises...failing that give Mr Patterson a ring as it looks like he has a lot of international connections. Good luck! Keep us up to date with developments.
Well I had steroid injection also. But it gave me palpations did nothinges for my pain. I give up now with doctors and consultons. Just got to find away of managing the pain. Good luck
I am managing with Gabipentin but I am taking so many to be functional. I am at the max dosage now and it is really just dulling the pain. I have good moments but they are short lived. I hate that the only thing the doctors can seem to do is medicate me more. I think my next stop will be to a more wholelistic doctor. There has to be a better way to manage this pain. I will beat this.
Melissa in Kansas City, MO USA
GabiPenton did not touch my pain. Breathing exercises calm me down.