I'm at the end of my rope with this. The pain is constant. It is biting into my neck, shoots up into my face and eye. It even burns. I sit with icepacks, eat advil like crazy and have muscle relaxers. Nothing helps. I have been to many drs. NYC, Mayo clinic etc. They see perfectly well in CT that everything is compressed. the subclavian vein is already permanently damaged with a broken stent in it. There are even times,many that I feel like my air is getting cut off and I'm going to pass out because the artery gets compressed. It happens with different positions and movements. I can only lay on my back to sleep and even then I have to keep trying to move my shoulder back to get pressure off. The problem - no dr will help because a plate with screws, extra bone and wire were put on the broken collarbone. A stent was put in the subclavian vein and it is now broken. The drs all say that because of the hardware a surgery would be way too risky. I can handle a lot and don't complain often but I can't take this anymore. It hurts so bad I sweat and feel nauseous. At times there is swelling and the I feel the pulse in beating like crazy where my neck connects to my shoulder. I don't know what to do. I can't live like this. There has to be some shots or something that could even cause the area to go numb. This constant pain is horrendous. On occasion it calms down. That seems to be on certain movements that open the area but it comes right back. I'm sorry for ranting but this has gotten really, really bad. As time goes on this situation just gets worse. Any suggestions? This is like having the worse migrain in my neck and going up into my head. I frequently where a figure 8 clavicle strap for support and to hold the shoulder back. That offers some small relief.

I dont think you are ranting at all, but being extremely brave coping with such a hard situation. I am sure some members here might have useful suggestions for your condition. Its really bad that you are in such pain and having to deal with it. Have you had a chance to see Dr Donahue, Julie Frieschlag, Dr Annests or Sanders - they are all TOS experts in the US, and perhaps there are some muscle blocks or the like which can reduce the pressure on your system? Perhaps some sort of custom ortho device can be made to "hold" your shoulder back? Worth a try

Seems to me you deserve to rant as much as you want! If it's this bad and constant, carry yourself to an ER where they know you from previous surgeries. You cant live like this day after day without some sort of support system. You need to deal with that broken stint. You need counseling tailored to dealing with chronic pain. You need Awareness Thru Movement training (it's a Feldenkreis thing - not PT but re-teaches you how to move without aggrivating your contition(s).)

I can highly Recommend Dr. Annest. Others may have recommendations on TOS specialists who may be able to give you *some relief.

Don't give up!
Anne

Have you been to Dr. Donahue? He takes "complicated cases". I had Erbs Palsy at birth.

Have you got botox injections? I cried when I started fully feeling my fingertips for the first time in ten years, botox injections made this happened. They are going away now, and now I'm reverting back to numb fingers, arms, and hands. Muscle spasms in back, neck, arm, face.

Have you tried Flexeril? This worked really well in combination with the botox for me.

Have you got deep tissue massages? Expensive but helpful.

Do you have pain medicine for when it gets really bad? I take hydrocodone when the pain is very bad.

Are you bilateral?

I have zofran on hand for the nausea.

Keep fighting!!! We are here for you.

{The problem - no dr will help because a plate with screws, extra bone and wire were put on the broken collarbone. ]

Can you go to a expert ortho surgeon for repairs of this? or perhaps a team of ortho's & TOS/vascular docs?

No one mentions Dr Brantigan (Denver, Colorado ) any more, but supposedly he used to do many redos of complicated cases..
But he hasn't been mentioned for about 5 years or so.
http://www.drbrantigan.com/

might be worth contacting some of the top names in our TOS drs sticky thread - to ask for help.
Maybe they can refer you to someone that can deal with the complicating factors..


But maybe the TOS experts aren't able to deal with any possible issues presented by the plates and screws.. hard to say but for sure, but you need high level experts.

Or expert surgeons that use the robotics?? I assume they can access much tighter areas..

I can so relate to your post. When I'm having a rough time pain-wise in fact, I also call it a "migraine" for the simple fact that more 'civilians' can relate to that term… Meanwhile, I'm dying with intractable neck/head/shoulder/arm and hand pain! They don't need or want the particulars.

There's just something about the pain being constant that can deprive us of any sense of control over this godawful situation. No surcease! But I see hope in the fact that your sx do calm down sometimes (maybe not today!), and that you intuitively know that it has to do with positions and movements. It makes me think a good bodyworker could really help you to capitalize on that! There are national networks that could help you to find a good Feldenkreis or Hellerwork practitioner in your area, for example.

Do you have prescription pain meds on board for when things become unbearable for you? A good Pain Management Physician? If not, you could explore some options by finding one who is knowledgable about TOS, both in terms of more effective meds, botox injections, surgical recommendations, etc. Ask also for a referral to a good Pain Psychologist. Can't change the pain, but the suffering is the piece we can work on!

Speaking of surgery, the two people who come to mind for a complex case like yours are Dr. Brantigan in Denver and Dr. Donahue in Boston. Dr. B was actually Dr. David Roos' star student at one time; Dr. R, now retired from surgery, is the 'grandfather' of the transaxillary first rib resection for use in the tx of TOS. Dr. D is obviously more geographically desirable for you, of course. Both are highly skilled, experienced vascular surgeons, with stellar reputations.

I know it's hard to fathom that NYC does not have a top TOS doc somewhere in its midst, but that is the case as far as I know. I hate to say this, but according to a top TOS doc I met with (who shall remain nameless, for obvious reasons), Dr. Schneider is a "butcher." The doc who said this has had many occasions to see - and try to deal with - the aftermath of Dr. S' work in the course of his own practice, and I do not believe that the statement was made lightly. I'll leave it at that.

Most surgeons worth their salt are going to want you to try a course of PT with a TOS-savvy therapist and other conservative measures such as botox injections, etc., before having you jump up on their operating table. They'll also want to order some dx studies (3-D CT scan, blocks, tests for subclavian bruits, EEG/NCV tests [running all the way up and behind the neck to test the C-8 and T-1 nerves], etc.). It would not surprise me if Dr. D's office could refer you to a good PMP and/or PT in NYC. If nothing else, I would bet that an extensive consultation with Dr. D re the specifics of your case might give you some comfort and hope about things.

You also may want to try a couple of the "Intelliskin" products (posture shirt, bra), the iPosture device or Spinal Q brace, for example, to see if you can find some relief that way (use the forum search function re "posture shirt" and several threads will pop up for you on this stuff). Others swear by Kinesio Taping to help their bodies to adopt better posture - which could be helpful for you if you need to avoid any of the pressure on your clavicle the posture shirts might bring on.

We all need to vent sometimes living in a world of pain, so please know that we are here to listen when your TOS journey becomes overwhelming. It's important to express those feelings, helps to take the power out of them I think. So no worries there!

I hope that you are feeling better by the time you read this, and that some of these suggestions from your fellow TOSers are helpful for you. Good luck as you continue your search for the right docs and therapists to help you along the way. And keep posting! Let us know how things are going for you.

Take Care,
Alison

Thanks for all the replies. All the drs I have ever seen say that because of the hardware anything surgical is too dangerous. My arm is basically pretty functional, strength and movement wise. It becomes weak and tired quickly but that isn't too troublesome. It is the pain. i would be grateful to have the nerve pain go and be left with numbness and tingling. I wish for just that. I think the drs are scared because the subclavian vein is permanently damaged and it along with the artery and nerves are getting crushed. The stent even broke in half. I don't know what is going to happen. I have a feeling something really bad is going to happen someday because of the artery getting crushed. I was going to try and see Dr. Julie Freiberg but she left Maryland and is now in CA. I live in NJ by myself. The crappy ortho that caused all this is at Rothman and doesn't even practice surgery anymore. The drs showed me on the CT scan where there is no room at all between the clavicle and rib. I'm only 49 and I don't see how I can stay this way the rest of my life especially since it is getting worse. I live alone and have to do everything myself. I work where I sit at a desk. I can't take narcotic pain meds they make me sick. I have valium for a muscle relaxer but it does nothing anymore. There is a lot of swelling in the pec muscle. Sometimes a steroid helps with that. Maybe I have to accept there isn't a surgical option until something really life or death happens and then they'll have to try and do something. Maybe I need to just try and go to a pain mgt doc and see if they can somehow get the area numb. I would take no feeling, numbness over this pain. I'm sorry to all you guys dealing with pain too. It sucks. I'm grateful I don't have back, hip or knee problems like many people do but this freaking thing is hell. I'm a pretty happy person and like my life but this is just hell. thanks guys.

I had surgery and am worse for it, so I am by no means a proponent of surgery generally speaking. I'm not sure what kind of doctors you've spoken with. I do think it is critical that you be seen by a TOS expert or two. I know doctors don't often like to follow another doctor's botched work, but there may be something that one of the TOS surgeons can do. to improve your situation. I thought it was common for stents to fail and need replacement. At the very least, maybe you could have that done and relieve some of your worry.

I completely relate to your description of the pain. I get nauseous and start sweating, too, when the pain and headache are high. I don't know if this is the autonomic nervous system freaking out or what, but it's awful. I've been in a two week bad patch and it does get very, very old. Like Alison, I just call it a migraine, too, because listing all the components of the pain for whatever person was unlucky enough to ask me how I'm doing is tiresome.

This forum is good as a place to rant and also a place to realize that symptoms like sweating or nausea or feelings mimicking a heart attack are quite common. Now if the researchers will just read all these first hand accounts.

Take care,
Kelly

eveewonder, have you read any information on pain pumps or SCS?

It is another option for dealing with long term pain.
I don't know what kind of doctors you have been seeing , but if they won't consider surgery they should have told you about pain control alternatives..

Medications & Treatments - http://neurotalk.psychcentral.com/forum72.html
For discussion about medications and treatments for any disease or health condition, including issues of medication toxicity.
Sub-Forums: SCS & Pain Pumps - http://neurotalk.psychcentral.com/forum118.html

There is also various combo injections or botox, that might be helpful.

About the broken stent - I've read that the body will make collaterals to help carry the blood, when there is a need.
Something to ask your drs about if you want, or search for more info on that to perhaps ease your mind.

Valium was helpful for the first 5-6 years of my ordeal, but they began to make me VERY depressed. I have used Tizatidine (sp?) and am now on Flexaril. I have heard from other people and Dr's that your body becomes accustom to meds and a change-up once in a while keeps the body off-guard.

You need a Pain Management Doc to follow your care. Don't go for a cheezy pain clinic, go to one affilliated with a hospital.

The body always amazes me with it's tripple-redundant processes of healing. Re-routing blood vessles, regrowing nerves, and the pain... how can we keep going? Our wonderfully made bodies can! (Sometimes) it's our minds that need the reassurance, and our bodies need assistance with meds.

I hope this early morning comment isn't too blunt. We're all pulling for you eveewonder,
A.