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Nerve damage to thoracic spine area-seeking fellow sufferers

I'm looking to connect with fellow sufferers of nerve damage to thoracic spine area. No one I know can understand what daily life is like for me now and we all need that from time to time. Here's my story. Late September of 2012 I bent over and felt a burning\stinging rip run through my left breast. for a couple of weeks the pain came and went so i let it go. after about 3 weeks i went to see my gp. he was clueless and fearing the C word, sent me to see a general surgeon who ruled that out but still didn't know what was going on so he sent me back to my gp who then sent me to a neurologist. the neuro did an mri and found an arachnoid cyst spanning T-3 through T-5 and since the compression lined up with my breast pain he sent me off to a neurosurgeon. he did a myelogram to confirm and said he was pretty confident he could help me. we set up surgery for jan 31st 2013. he warned me that it was a painful surgery, as major as removing a spinal tumor and that there were risks. there are risks with all surgeries. i had 3 c-sections and 3 foot surgeries prior, i understand recovery time and risks but i never expected to be in the boat i am now in. the breast pain only went away for a day and besides the pain of recovering from the surgery itself i now have nerve damage in my back, left breast and strangely a patch on my right forearm that began 3 weeks after the surgery. no one would tell me anything, just said i needed time to recoup so, after months of not getting any better i started searching on my own and came up with central pain syndrome, when i read the symptoms i literally cried!! it matched 100% so i printed the info and took it in to the doc. he said yes, that's it, i was wondering how i was going to explain it to you, now i guess i don't have to. he sent me off to his pain mgt doc who is not very nice and i spent months feeling like a faker or a nut job, even sought out psych help. i am currently waiting for my appt. with a new pain mgt doc elsewhere. i feel so alone in my pain. my family and husband try to understand but they dont get it. sometimes i think hubby thinks that if im not whining 24/7 im not in pain. i cant do much without god awful pain so i sit on my couch most of the time. travel is painful so i only venture out when needed. i would love to hear from others with similar pain issues. chronic pain is a lonely world. PS...i gave up on proper punctuation as i have a new keyboard and its not cooperating in that area.


  • LizLiz Posts: 7,832
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  • Mrsh01MMrsh01 Posts: 3
    edited 01/14/2014 - 10:13 AM
    Yes, alenson, it is a horrible feeling! I don't know how many times I've said " I wish people could wear this broken body of mine for just 1 day! She never really said whether she agreed or not, She would barely speak to me other than ask questions to which she wanted no more than a 3 word answer or she cut me off. I complained to my neurosurgeon but he never did much. Pain mgt doc did 3 nerve blocks and one nerve ablation from April through mid Sept. I finally told surgeon that I was tempted to find a new doc, he said he would find someone new for me but never followed through so after a bunch of frustration I found someone new and am hoping for a better experience. I am convinced central pain is what is going on, everything I've read is what I feel. I also have Rheumatiod Disease, diagnosed 2 years ago. I was just getting used to that pain sentence when this happened. I try so hard to be happy, I was always a happy person but it's extremely hard these days. I go to talk therapy and see a shrink for depression/anxiety meds. They help sometimes but when you're in the thick of pain being happy can be hard to find. Thanks for reading and responding! I hope you're having a decent day today! :-)
  • LTee43LLTee43 Posts: 84
    edited 01/28/2014 - 4:15 PM
    Thoracic spine pain is supposed to be the worst back pain there is. I'm to the point where I can't have a chiropractor even stretch me out or push on my spine, I just lock up anticipating the pain that's coming. Fortunately everything with me is well-documented with my car accident and all the care I've received.
    Diagnosis: Thoracic facet syndrome & cervical and thoracic radiculopathy from car accident trauma.
  • MRSH01 - I actually signed up with this site for the same exact reason. I had a bad car accident 13 months ago and broke my neck and back. People think I'm crazy when I tell them that breaking my neck was a walk in the park compared to the nerve pain I deal with on a daily basis. For me, the pain basically covers my entire upper back, shoulder to shoulder, from the back of my skull down to my shoulder blades, and it radiates heat and pain like no other.

    I have also had multiple foot surgeries, I've broken my tailbone twice, etc. I've been through quite a few (minor) recoveries, and nothing compares. I completely get the fact that your family does not understand. The people close to me try to understand, and they go through phases of wondering if I'm complaining of imaginary pain because of post traumatic stress (thus, I understand the psych theory) and wondering if I still have something wrong with my spine.

    I must say, just reading your little paragraph hit home for me, it is very hard to find someone who understands this!

    Feel free to reply here or email me. Mollye.gibson@yahoo.com
  • anelsen15 said:
    LTee43, I thought the same thing, but actually I am having so much worse pain from neck and thorocolumbar junction. The downside of thoracic is getting thoracic literate doctor to treat, but with the ribs it can help stop motion that in other areas would cause more damage. So there is good and bad, I had great luck with ESI next to tear. Could you describe how you were documented with facet syndrome in thoracic ? I only ask because I had popping, stabbing, arthritis that was "causing pain" and inflammation that was supposed to be from facets and herniated disc that was actually from a tear in disc. Upon ESI next to tear the above to things went away permanently for the most part. How do you feel when you wake? I ask because I was pain free upon waking and thats one reason I never bought the "you have arthritis " in area causing the pain
    My official diagnosis is thoracic and cervical radiculopathy and thoracic facet syndrome. It has codes that I see on a lot of my paperwork. I've had many ESI treatments including intercostal rib nerve blocks.None of them have really worked. My diagnosis has changed a bit recently, it seems that my thoracic pain comes down from my neck, the facet joints on the left side aren't moving well. I have never had an injection on my left side.

    I have my good and bad days when I wake up. I've had a few odd days with zero pain for a few hours as well. My day starts out with taking two Aleves as soon as I get to work, by 9-10 I'm into the percocets.

    I really wish I had something as definitive as a torn disc, I'm told I probably have scar tissue in the discs by now. I'm in massage therapy 3X a week and the goal is to free up my neck that will release the thoracic tightness/pain.

    Diagnosis: Thoracic facet syndrome & cervical and thoracic radiculopathy from car accident trauma.
  • Molly I did my damge from a motorbike accident and like you my pain did not localise for around 7 years.

    Don't believe them when they tell you thoracic will go away. It won't. If it's just happenned a brace can help it heal. They think thoracic is stable becuase of your ribs. If it isn't stable, you can feel your ribs out of place on one side - get someone to take a look at the one above the damaged ones. I use a sports physiotherapist.

    It is NOT in your head. I've had 8 -9 years fo absolute rubbish from specialists. Also try to take a muscle relaxant with a pain killer.

    If it is the one on top mechanically out of place if it is put in the correct mechanical position it is instant relief from the pain they tell you is in your head.

    Mine is not textbook. Even if it is text book think they got thoracic wrong as most Dr's believe it should be stable and not hurt. Yeah spot on. I am so over the medical profession with thoracic pain. Most of them won't admit they haven't got a clue becuase it is rare and they haven't seen it before. EGO's play a part.

    Try a sports physio who will gently feel your spine. If your thoracic is mechanically out of place ask them to put it in the correct mechanical place and tape it there or your muscles will spasm it out again. I am only talking about damaged vertebrae, not disks.

    What happened to me is not textbook. It may help some of you but it the only thing that gave me relief after 8 years and it makes total sense. If you can mind map your accident and where the pressure to injure your vertebrae went, mine crushed on the right side, you may be able to work out what happened yourself. My physio finally did work it out by listening and believing me. She could see my eyes were full of pain. Even the psych could see I was in immense pain but noone knew how to fix it.It is so hard to crush thoracic vertebrae in an accident becuase of your ribs.

    So maybe your vertabrae didn't crush to the front, and is not stable. I spent so much money, if they don't know what it is normally a pain clinic if they make you exercise makes it worse. Try to find someone who will think outside the box.

    It helped me so maybe it could be a problem for some of you. No-one is crazy, just in incredible pain. You have to get a correct diagnosis and mine was totally wrong for 8 years.
  • I can attest to thoracic pain from a motorcycle accident. I hit a deer on July 26, 2008 on my motorcycle at 45 mph. I am just now starting to feel the effects. I have been through the diagnosis process for MS, Lymphoma, and multiple Myeloma. I have seen my local neurologist and was sent to a neurologist at a local university medical center where still nothing was found. All the tingling in my hands, arms, face, chest, fasciculations in my thighs and eyes. I will see my primary on Monday and ask her to follow through. when the accident happened I broke all the ribs on the left in the front and rear. I also severely fracture my shoulder blade, and punctured my left lung. I also broke my collar bone. They were only worried about the punctured lung. I think I also broke my left foot, but it was never looked at. A podiatrist x-rayed it and asked me if I ever broke my foot. I was like "huh?" My back gets warm when there is pressure and the tingling gets worse. My left shoulder hurts bad off and on. o much so I cannot drive with my left arm. It just hangs there when the pain hits. I hope hey can find some resolution!
  • thoracic spine painthoracic spine pain Posts: 566
    edited 03/30/2014 - 4:37 AM
    I was also in a motorbike accident. When I came off I also took most of the impact, damage on one side, except mine was to the right. I crushed my T5 badly, broke ribs on my right, a bit like you someone told me years afterwards, busted my right ankle very badly , totally wrecked my right shoulder. I was not diagnosed for 8 years correctly.

    When they finally worked out what had happened - I'm saying this because it sounds like you took all the impact on your left side - one person realised my thoracic vertebrae (T5 80% wedge crushed) had crushed to the right side not the front. Normally thoracic vertebrae crush to the front.

    I should have realised as I felt my hips and they were not aligned. I went to a pedorthist - they specially make shoes after looking at your gait, measuring your hips, and lots of other tests, they are not podiarists. He realised my right side was 10 cm shorter than my left side which must be how much my T5 vertebrae had crushed in the accident. He builds up my shoes to 10 cms on the right so my hips are aligned.

    Consequently my T4 above my T5 had nothing to hold it into place on the right side. My T4 was slipping onto my nerves and spinal cord on the right side, it was agony 24/7 but most of the pain was only on the right.

    So you may have also damaged your spine like me, and it may be crushed to the left not to the front.

    Specialists don't see many thoracic injuries as they are so uncommon through trauma. They also believe the thoracic vertebrae are stable but when you break ribs as well - my thoracic vertebrae was not stable.

    So when you see someone suggest the possibility of crushing to the side not the front. I don't know why it was not picked that mine was crushed to the right not to the front - it showed up my T5 really badly crushed on the Xrays and MRI's but maybe they don't consider that it doesn't necessarily always crush to the front.

    Now the jigsaw fits into place but it took 8 years and $30,000 to eventually get the correct diagnosis. My physio tapes everything, my scapula, my shoulder, my T4 - back into the correct mechanical position and it is immediate pain relief, that I thought I would never get again.

    When it is out I can feel my ribs sticking out to the right. My physio just gently pushes everything back into place. I still take pain killers and muscle relaxants combined - my muscles continually spasm - the muscle relaxants helped a lot.

    So I am glad some one finally thought outside the box. It may be what happened to you as well - so firstly check if your hips are aligned. I use a great sports physiotherapist who worked it out. I don't want anyone to go though years of mis diagnosis like me when it should have been easy to work out in the first place. My shoulder damage is still there - they want to operate on my shoulder but have said my thoracic is too dangerous to operate on, which after a lot of research I believe as they would have to go in through the front and I can still walk.

    I hope this helps you a bit because there is no textbook if you have crushed spine to the left. It isn't a common thing to do. Good luck with your appt but have a think about it as you seem to have had all your impact on the left hand side so you may be me in reverse.

    Another interesting thing to note was that they didn't realise how bad my shoulder injury was on the MRI until it was taped into the correct mechanical place.

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