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Anyone else ache from head to toe and have cervical rib???

Posted , 6 users are following.

laura46849
laura46849

Hi,

I was told I have possible cervical Ron December 2013. I was discharged and basically left to get on with life. Every day I get weaker and it's now affecting my whole body. Is this normal for cervical rib or is there more to my condition???

0 likes, 14 replies

14 Replies

  • Jopo
    Jopo laura46849

    Posted

    NO! It is not.

    If you didn't see someone confident and knowledgable in thoracic outlet syndrome and cervical ribs then they would not be confident in treatment.

    You need to ask for a refferal to a vascular surgeon, I'm not sure what kind of Dr you saw initially, if it was vascular then you need to ask for a refferal to a specific vascular surgeon that deals with this. There are a number of them in the UK. Where are you? It may mean a refferal out of your area but it is very much worth it to see someone knowledgable.

    Initially I saw a vascular surgeon and he referred me onto a specialist as it was outside his expertise.

    I had surgery to remove the extra rib and my first rib and anything else that needed to go. My nerves were pulled tight over the rib. Though I did not have a great outcome from the surgery I would certainly recommend it to someone suffering with a c-rib as there is no chance of improvement. Did they not even try physio? That's usually the first line treatment when someone doesn't know what to do!

    Good luck smile

    • Jopo
      Jopo

      Posted

      I misread your question slightly! I meant no it's not normal as far as treatment, but yes it's normal as far as it can affect more than just the area of the rib. What symptoms do you have?
    • laura46849
      laura46849 Jopo

      Posted

      I get very tired and weak from walking anymore than 500 yards or up the slightest hill. It's like a dull ache within my body and my whole body goes heavy and really weak to move. I am in the UK and was told by an orthopaedic. I had physio on my shoulders but was soon discharged after nothing helped. So I'm now discharged from anywhere with no one wishing be to help. They have tried sending me to pain clinic but the waiting list is huge and to be honest I don't see much point as they wont tell me much different to what I already know. I'm only 19 yet feel 90 I'm open for any suggestions to help cope and improve my current lifestyle
    • Jopo
      Jopo laura46849

      Posted

      While you have an obvious obstruction there causing your symptoms relief is unlikely until you have them removed... On the side where you don't have an extra rib there may be some hope, a physio with knowledge in the area may be able to help.

      As for getting out of breath this happens to me now after the surgery, I'm not 100% sure why, I can o oy assume that the nerve that runs to my diaphragm is affected which can cause breathlessness.

      Pain clinic won't be able to help you anyway tbh, as while they know there is something that can be done they don't have input, they only see end of line patients who have tried all medical interventions, though they may be able to help get you referred somewhere to see a vascular surgeon. That's really what you need to push for, find the closest specialist to you, go to your gp and tell them to refer you to them. Gp's that deal with transient uni students often don't do much in the way of referrals as they don't treat you for long enough. Can you be seen at your gp at your none uni address and travel for appointments?

    • laura46849
      laura46849 Jopo

      Posted

      I wish I could but they are being really awkward about being part of two GPs thank you for all your help I'll keep fighting and hopefully get somewhere x
    • annette91728
      annette91728 Jopo

      Posted

      My surgeon does not always remove the rib. He removed my scalene muscles on my right side in 2014 and on left side in May 2017. The scalene muscles wrap about the nerves in your neck down to your ribs. Causing that weakness, hand and arm pain and breathing issues etc.

      I've had 10 back surgeries, the thoracic/rib pain is unlike any pain I've had. It's constant and debilitating. It took me 3 years to find the right doctor. Most doctors don't believe in or want to discuss thoracic outlet syndrome. Find a good vascular surgeon who specializes in TOS.

  • picnic1
    picnic1 laura46849

    Posted

    Hi Laura, I'm wondering what symptoms you had that made them discover the extra rib? I had a cervical rib that caused TOS syndrome and had the rib removed in 2012. In my experience TOS made me lethargic and gave me frequent headaches. Also it could be trapping nerves and causing pain in areas around your chest, arms or neck. I would definitely see a different Doctor and push for an appointment with a Vascular Surgeon. I had to push for years to get the right help. I had my own G.P and two different consultants in the end! When you ask if there could be more to the condition, my advice and from my experience, you know your own body, if it doesn't feel right or is painful and makes your life a misery, don't let the Doctors palm you off. They are there to do their job and most of them would get to the bottom off your problems. Make them know you ain't going away quietly! Good Luck!
  • picnic1
    picnic1 laura46849

    Posted

    Hi Laura, I'm wondering what symptoms you had that made them discover the extra rib? I had a cervical rib that caused TOS syndrome and had the rib removed in 2012. In my experience TOS made me lethargic and gave me frequent headaches. Also it could be trapping nerves and causing pain in areas around your chest, arms or neck. I would definitely see a different Doctor and push for an appointment with a Vascular Surgeon. I had to push for years to get the right help. I had my own G.P and two different consultants in the end! When you ask if there could be more to the condition, my advice and from my experience, you know your own body, if it doesn't feel right or is painful and makes your life a misery, don't let the Doctors palm you off. They are there to do their job and most of them would get to the bottom off your problems. Make them know you ain't going away quietly! Good Luck!
    • laura46849
      laura46849 picnic1

      Posted

      I had pins and needles in my hands are a dull ache in my wrists, as well as tight achy shoulders. I have been treated for carpal tunnel but that didn't fix anything. Which is why they then did X-ray to find the extra rib on my right hand side and enlarged muscle on the theft which is trapping my nerves. So far two orthopaedics, two GPs and two physiotherapists have turned me away. I'm between homes at the moment because I'm at university which makes it difficult to have treatment but still been discharged and no one wants to assist and help. Will keep fighting to get it sorted but just need some way to help improve sleep and every day living until the NHS decide to help. It's been 5 years now since symptoms first arrived.
    • Jopo
      Jopo laura46849

      Posted

      The longer it's left the higher the risk of permanent nerve damage.

      You need to see a vascular surgeon asap as they are the only ones that treat this (In the UK at least I think)

      Depending on where you are there are specialists in various places.

      If you are on facebook there is a thoracic outlet group on there and they have a list of recommended surgeons. There is also a forum on a page called neuro talk and they also have a list, not sure how many UK surgeons are on it as most members are in the us.

      I agree with above comment not to let yourself be fobbed off by unknowledgable drs.

      Good luck.

  • lsurgeonpatient
    lsurgeonpatient laura46849

    Posted

    Hi Laura, 

    I can really empathise with you. I had 6 hand and arm operations for various problems over a 12 year period. Finally I met an incredible diagnostic physiotherapist with extensive experience and knowledge in complex and persistent difficult to diagnose problems. He examined me very gently and thoroughly and diagnosed me as having bilateral neurogenic thoracic outlet syndrome. Finally someone belived me. It was my fist step on the road to recovery. Without a proper diagnosis one can go around in circles. I'm not sure where you live, but he is well worth making the journey for. His name is Mr Rob Patterson and he works in Bristol. He will then help you find the right person to treat you if you need surgery. I hope this will help you as it did me. Good luck.

    • annette91728
      annette91728 lsurgeonpatient

      Posted

      My story is similar. Hand surgeries, cervical surgery. Dr. Kaj Johansen Seattle is an excellent vascular surgeon. He does not usually remove the rib. He removes the scalene muscles.
  • coltmacbraid
    coltmacbraid laura46849

    Posted

    Have you had surgery to have your cevical ribs removed and if so did these symptoms go away? I have an extra pair of cervical ribs and have had these exact symptoms for the past 6 years. I have been diagnosed with fibromyalgia but haven't been able to find a treatment that helps RX wise. I am thinking now that it just may stem from TOS and nerve compression/damage. I am due to have my left one removed on the 27th and go from there.
    • annette91728
      annette91728 coltmacbraid

      Posted

      Find a surgeon who does not remove the rib. Your scalene muscles wrap around all the nerves from side of your neck down to your to your ribs. Removing the scalene muscles are what my surgeon did.

      I have fibromyalgia too. This is very different from fibromyalgia pain.

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