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Went and saw a specialist for TOS and bad news.

hisbeauty4asheshhisbeauty4ashes Posts: 182
edited 06/11/2012 - 8:28 AM in Upper Back Pain, Thoracic
Hi my friends.

I went and saw a specialist today in Berkley Cali. I received bad news about the TOS I have. it turns out I have a sever case of TOS, and I am so new to even understanding what it all means. I am going in next week for some shots and then I will be scheduled for an MRI so we can see which area the compression is taking place so surgery can take place.Yikes I am so scared and tired of dealing with all these issues I am so overwhelmed I am still healing from five surgeries in a fourteen month period and now boom something else.

Does anyone know the process of all this stuff and how did surgery help you.



  • I'm sure our resident expert on this topic will wake up soon and answer any questions you might have. Griff is recovering from surgery because of her TOS. I know how you feel about trading symptoms and pains. I'm in the same boat as you on that one. Unfortunately the only advice I have is to hang in there. Help is on the way. You're lucky that you have a doc who takes TOS seriously. Many don't even consider it until it's almost to late.
  • Jeanie,
    I certianly wouldn't call myself an expert on the subject but I do know a bit about it. I'm sorry for the diagnosis. What type of TOS have you been diagnosed with?

    There is very little that an MRI will show- are you sure you're not having an MRV? This is a special MRI that only looks at the veins and arteries and will give a firm diagnosis of venous or arterial TOS but will not diagnose the nerogenic type. This is usually diagnosed through exams, history and injections and is rarely operated on. The usual course of treatment for neurogenic TOS is physical therapy from a specially trained therapist.

    I would be cautious of a doctor calling for surgery so soon unless it's clear that you have a blood clot or a severe blockage of a vein or artery. I presented with a blood clot and had no choice- it becomes a matter of "life or limb" at that point as they say. I wouldn't have chosen to have a surgery for neurogenic TOS because of the terribly invasive surgery that it is and the risk of more damage to the nerves. After surgery I have very little use of my right hand and am not sure how much I'll be able to regain. I wouldn't have done it unless I had to.

    Please let me know if I can answer any questions for you. Having been through this I can understand how scared you must feel. It's like being caught in a whirlwind and thrown in another country where you don't speak the language. Don't be discouraged by all of it and know that I'll be here to support you.

  • Hi Griff,

    I have been thinking about you and was wondering how you were doing.I am Glad to hear from you. I am so sorry and I pray your arm and hand will come back to its proper form of use.

    I am so foreign to what I am going through, and may not even say all the things right so for that forgive me. They are going to give me shots next week in hopes that it will give me some relief. They are doing that MRI deal in which you speak of and he mentioned other test too I had never heard of.

    This is the deal my right arm and hand are swollen. I have no feeling in my arm when he touched it with a sharp object. I have no reflex either. On my neck you can see where it is so swollen that it is scary. I have discoloration in my hand and arm as well. I have burning that goes from my neck through my shoulder and into my arms and oh man does it hurt! I have had headaches that turn into Migraines almost daily. When I turn a little bit I get disoriented and a bit dizzy.I hurt around my shoulders into my arm pits and I hurt in my neck and shoulder blades and my collar bone does too.

    This is the funny part I thought all of this was because of the neck and now it has turned out to be TOS. I thought it was something that would eventually go away. This is scary to me.For the last two days now I have experienced my left eye fluttering every ten to fifteen minutes.I am like what is this!!!!

    Griff how are you feeling and is your blood flowing now?

    Many hugs to you as my heart goes out to you so much.

  • I'm trying to heal. It's a brutal surgery and a long recovery and all I can do is make the best of it. The veins are decompressed so I don't have any more swelling in my arm or hand. Thank you for thinking of me. I feel like I'm recovering well but the nerve issues are very troublesome. We can't escape everything untouched.

    With the swelling it sounds like you may have a vein or artery involved and I don't know why you aren't having the tests done NOW. I was put on injections blood thinners immediately and am still on them (I gave myself my last shot yesterday and am now on oral, hooray!). If you have that swelling it's emergent that they find out if you have a blockage. I was in the next day when I told them about the swelling.

    I see TOS as being partially a neck problem since it involves the anatomy there. The reason that vascular surgeons got into the mix is because of the involvement of the veins and arteries. Mine is a result of the accident that caused my cervical problems. Were you in an accident?

    Don't feel so afraid that you don't learn all you can. There are a lot of people out there doing this surgery that shouldn't be and you need to know what is important and not take everything at face value. It's scary, yes, but you have to take charge and know your condition. It sounds like you're stressing out a LOT right now, which is normal, but don't attribute everything to the TOS. The stress from the experience alone will put you through the wringer. Try to relax a little, do some research and ask a lot of questions. You know I'm here when you need me.

  • i too have TOS .but i have been advised NOT to have any operations by professor walker at our specialist centre in manchester uk.my TOS is normally mild but when it flares up it is hell.i find rest and more oxycodone helps .having looked in to the option of an operation ..it would have to get to permanent flare up level before i would consider surgery hope you get a good result
  • i too have TOS .but i have been advised NOT to have any operations by professor walker at our specialist centre in manchester uk.my TOS is normally mild but when it flares up it is hell.i find rest and more oxycodone helps .having looked in to the option of an operation ..it would have to get to permanent flare up level before i would consider surgery hope you get a good result
  • Hi and thanks for letting me know how you are.

    I am stressed at the fact that I have been through so much already and am tired of dealing with all of this physical stuff that keeps coming at me. I go in next Wednesday for Shots and then we go into the testing.

    The fact is I do want to know and learn about it so I am prepared for what lies ahead for me. I know you have gone through it and I wanted to know more from someone who has walked through it and how has it effected them.

    I pray you feel better and that the Lord gives you a quick recovery and that all things will come into alignment in your body.

    As far as car accidents I had six in a row in my twenties and ones of those car accidents I went down a 75 foot cliff is Tahoe. The In 1996 I was tree trimming six feet high up on a ladder and the ladder broke and I feel and landed on cement sidewalk on my back and my head hit and it almost knocked me out.I was in bad shape after that in my neck and back. I did not go to the doctor until two months later as I was still in a great deal of pain,it turned out that I fractured my spine and the doctor was amazed I was not Paralized. Every since then the discs herniated. So this is my quick story.

    Take care and many hugs
  • And I thought getting hit by a semi was bad! You have had quite the life Jeanie. All that trauma could very well have caused the TOS and it is possible that it's lurked there, unnoticed because of all your other problems until now.

    I do agree with Straker and so does my surgeon in that the surgery is not something to go into lightly. The ONLY reason I had it so quickly is that I had a clot. That and if the arm is totally blocked in any position would be the only reason not to try to resolve it with PT first. Please talk to your doc about this, okay?

    I understand the stress as well. I've had 2 cervical surgeries and now this TOS in a year and it gets old. It's easy to get discouraged but keep your chin up and keep fighting. Getting too stressed will lead to bad decision making and more pain. Keep control of your situation. Do you have loved ones around you? It helps to take someone with you to every appointment to keep things on track. When I heard surgery again I stopped listening- thank God my husband was there!

    Let me know how things go this week. Let me know if you need anything.

  • Hi Griff,

    Yeah I have a friend who is like a mom to me she sure is a blessing.I am not married and live alone.

    I do not want another surgery that is the last thing I want. I am starting physical therapy today and I am praying that works. It turns out that I put two appointments on the same day one was the shots on Wednesday and seeing my surgeon so now I need to cancel the shots until maybe next week. My surgeon is retiring and I need to check in with him first before going through getting these shots. So I will make some phone calls today and see what steps are next. To be honest I feel a little check in my stomach about doing this with out talking to my surgeon, so I am going to go with that.

    Anyway you are a Blessing and thanks for the counsel on this I sure need it. I am tired of surgeries and I might have to have one on my left thumb and wrest do to my thumb popping out joint and pinching a nerve. So that is a whole other issue.YIKES :''(

  • Hi Griff 
    I was hoping I could get some insight as to wether my symptoms could relate to TOS my doctor thinks it may I'm scheduled to see a neurologist soon! I just want to know if there similar to those who have it or has had it! Please get back to me when u have the chance! Thank you
  • Bruce EitmanBruce Eitman Akron, OH, USAPosts: 1,178

    This discussion is from over 7 years ago.  Griff hasn't been active in about 4 years, so please don't wait for an answer.

    Spine-health Moderator

    Read my story at Bruce - My Story
    ACDF C4-C5-C6-C7, and getting better every day
    It has been a process of healing, learning, exercising, and resting - and figuring out when to do which.

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