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"Procedure" on Monday with surgery to follow soon

griffggriff Posts: 496
edited 06/11/2012 - 8:27 AM in Back Surgery and Neck Surgery
Hi all,

I have had a recent development which has put me in pretty deep water.

Not too long ago I was diagnosed with Thoracic Outlet Syndrome, the nervogenic type. The Vascular surgeon that I'm seeing suggested that I have an injection into the muscles that are holding the nerve bundle hostage, more of a diagnostic tool than anything else, and then physical therapy. He wasn't 100% hopeful that it would help but we were determined to give it a go. Many times the nervogenic TOS can be resolved with a special kind of PT.

In the process of trying to get it all set up my right hand ballooned to over twice it's normal size. After 4 days of this I had to call his office to make the appointment for the PT and asked the nurse if there was any advice she could give me to get the swelling down. She put me on hold and, when she came back on, told me that I was to go to the hospital the next day to have a special MRI and then see the vascular surgeon afterwards. I told her that I couldn't get there as I couldn't drive like this and my husband had to work. She told me that I had no choice, I had to get there somehow. Needless to say I was a little freaked out.

We went in to see him to find out that I am one of the rare cases that have both the nervogenic AND vascular types of TOS. I have to go into the hospital Monday to have a catheter put into the vein that supplies the arm to remove the blood clot that has formed from the damage and then he wants to do the TOS surgery within 2 weeks. I have to inject myself with an anticoagulant twice a day until the surgery to stop any new clots from forming. If my arm is down I have very little blood flow, if it is raised, there is no blood flow at all to the arm.

I have never been so freaked out in my life. He didn't mince words with me- he said that this surgery would be more painful than both of my cervical surgeries combined- they actually have to remove a rib and muscles- and that the recovery is long. However, not doing it can mean that I lose complete use of the arm. It doesn't seem like I have a lot of choice here.

I have faith that this will, if not resolve all of my arm issues, at least let me know which ones are coming from my cervical issues. Let it be a lesson to us all- things may not always be what they seem.




  • Oh my goodness, how scary!! I can only imagine what I would have done!! I don't know much about TOS, but am researching more since reading of your experience.

    This procedure and surgery sounds terribly painful, but necessary. I will definitely keep you in my thoughts and prayers and please keep us posted as you go. Does it hurt to type on the computer??

    Yes, this is a very good lesson we all need to hear. So sorry you have to be the test subject.

    Many gentle ( ( HUGS ) )

  • I am so sorry you have to go through this~...please know I will be thinking of you Monday
  • I am so sorry about all this happening to you! Best wishes for a speedy recovery. Check back and let us know how you are doing, ok?
  • I'm so, so sorry to hear about this. It's very scary and I wish I could hug you in person right now. :(

    My thoughts and prayers are with you now and until they get this thing cleared up.

    >:D< >:D< >:D< >:D<
  • Sounds like you have a good surgeon, you are in my thoughts.
    >:D< >:D< >:D<
  • I am so sorry that you have to go through this. You've been through so much. I hope this helps and that the next surgery is the last surgery. As I've told you before you are in my thoughts and prayers but especially tomorrow. I still wish I lived closer to you so that I could at least hold your hand and help with your Mom. But I will certainly be thinking of you tomorrow. Post as soon as you feel up to it because I'm a worry wart and will want to know how you are doing. Much love and many hugs! >:D<
  • Sorry you have to go through this, but my thoughts and prayers are with you
  • Griff, you are supposed to be getting better! I am so sorry you have yet another surgery to deal with and this TOS stuff sounds absolutely awful. I am hopeful that this will get you on the road to being at least somewhat back to the old you. I have never heard of the hand swelling with the TOS stuff. This sounds like an incredible nightmare, and I think it is your turn to be over all this.

    I pray that you will be in good hands and that the surgery will be a success. Please keep us posted. I'll be thinking of you.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Thank you all for your good wishes. I'll be in the hospital tomorrow for the clot removing procedure (I can't for the life of me remember what it's called, everything just sounded like Charlie Brown's teacher after a few minutes). I should be in the hospital only overnight. I did start the injections of Lovenox twice a day and they hurt like heck! They burn worse than the nerve pain in my arms LOL!

    To top off this lovely week, I slipped on the ice this morning and went down hard. Of course I fell sideways and cracked my neck to the right. I figure if I did any damage they'll find it when they're in there... gotta get your money's worth! I wonder how good a vascular surgeon is at spines?

    I'll keep you up to date. This surgeon is THE guy for TOS. You should see all the signed jerseys from famous sports people hanging in his office. He's actually created many of the procedures that he performs and I have a lot of faith that he'll take care of this problem.

    Yes Cheri, it hurts like the dickens to type....or to do anything else. The pain has been there for a long time so it itsn't much different but I have a huge hand now and it's hard to get my sausage fingers to bend!

    Thanks again my friends. Your prayers will go a long way.

  • It's good to hear that you are in the hands of the best of the best tomorrow. Still we'll all be sitting on pins and needles until we hear from you again. My prayers go with you.
  • I am so sorry to hear this. The dogs are probably freaking out as much as you. Please be careful. I know you will come out of this with flying colors. Best Wishes and let me know how it goes. My dogs say Woof and get well soon!
  • And I have very good news! I had the veinagram done today and there was no clot! Apparently it broke itself up and, lucky for me, didn't cause a stroke in the process. Because there was no clot I didn't have to have the angiogram or any clot busting stuff done I got to come home this evening.

    I have to call my surgeon tomorrow and set up the next step-surgery. While I'm not looking forward to it I have to have faith that it can help me regain some function and strength of my arm.

    All your good wishes worked! Thank you all so much!

  • Hi there -

    I'm new to this thread but have posted on some of the others - still a newbie.
    I've been following along since you posted. How awful to have to deal with something clear out of left field with all your other concerns.

    It made my little heart warm to see that you had such good luck though! Someone is definitely watching out for you! Your story struck some familiar chords as far as the old saying, "When it rains, it pours". Why does that often seem to be the case? Last year I was doing a PT program called Mediback during the same time my dad was placed in Hospice care and then my mom just fell over in his room while she was visiting him and fractured her T2. I felt like I was just destined to follow ambulances for the rest of my life!

    Anyway, I'm so happy for you and let's take that as a good luck sign for your surgery and a life without pain.

    Hang in there, kiddo!

  • I'm glad the clots dissolved themselves. That's wonderful! Now you just have to let us know when your surgery is scheduled. I can't imagine having a rib and muscle removed. You will remain in our thoughts and prayers. And I agree NO!NO!NO! You are suppose to be getting better. This just has to be the last for you.
  • Griff,
    Hope all goes well with your upcomming surgery.
  • Hi Giff,

    I am sorry you have to go through this but you are helping me understand what I am dealing with much better.I saw my surgeon yesterday. My surgeon told me I had Thoracic Outlet Syndrome I had never heard of it before in my life! I was the one who had five surgeries in a fourteen month period. I had three neck surgeries and now I am faced with another bulged disc in my neck above the the four disc's that were fused,and also this Thoracic Syndrome, I must say I ended up in tears. I had enough of pain and surgery.

    I had sever pain in the right side of my neck that was like a burning shooting aching that went into my shoulder and down my arm. It is one of the worst pains I had ever felt and it sticks around for a long period of time that you can not move your arm.My surgeon tested my should and arm and checked my pulse when raising my arm above my head and found I did not have one,and let me tell you it hurt and stirred up the pain.

    Well now I am having to see a specialist in Berkly California. My surgeon said it was a bad case ad might need surgery the one in which you are speaking about.

    My friend Giff we are suppose to get better not worse.

    Well my prayers are with you and please let me know how it goes as I am so new to all of this and am in tears.

    I send you many hugs sweetie.


  • I called my surgeon and he still wants to do the surgery in 2 weeks. I thought I would have a longer stay because there wasn't a clot but of course I'm not that lucky! The blood thinner, Lovonox, is so expensive, my co-pay is $120 for only 5 days worth! There's an incentive to get it done.

    I haven't scheduled surgery because I'm still trying to coordinate care for my mom while I'm away and for myself when I return home. I have to have someone here for 2 months and I have to divide it up between family members. Of course, my dogs have to go back to the boarding kennel too...I'm very not happy about that one but at least there are only 3 of them now instead of 9.

    I'll post an update when I get my stuff together!

  • I responded to your post in the cervical section before I came upon this one.

    I know what you mean about not getting worse but you have to take the point of view that this may be the one that resolves most of your pain and problems. That's what I'm hoping for. Make sure that the surgeon is fully trained in this surgery should you need it. I won't lie to you, it's not an easy one so it's important that you're in the best hands available to you.

    Let me know if there is anything I can do for you, okay? I know how scary it is, trust me. Hang in there Lady, you've been through a lot already, one more isn't going to break you now!


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