I have been suffering from a lot of neck/shoulder pain and arm numbness for over two years, diagnosed with TOS after one. To get things manageable and me back to work, I take a high dosage of narcotics. My pain level was pretty steady for a while, but the last three months, it got worse. Dr. Sanders has recommended surgery, my pain dr and husband agree we should try something.

Here is my fear:

What if they get in there and they find nothing.

What if it is just my brain wanting the pain meds? I never feel any different after I take my meds, the pain is still there, but I continue to take them. Part of the reason I want to do the surgery is to stop taking the them.

If it was all in my head, the Drs would be able to tell, right?

Was anyone else afraid that the surgeon would find nothing?

Sorry for rambling and thanks for reading.

Hello and welcome!

Although long term use of narcotics can create more pain ( your brain doesn't produce the dopamine on it's own anymore and it relies on medication, hence why they don't "work" anymore) I doubt that you would have so much imaginary pain. From my experience with narcotics which I have only taken regularly after my two rib resections, I had noticed that after about a month they started giving more nerve pain and once I stopped them, I had less pain. Of course that is also related to healing and less inflammation but I feel like the narcotics pain is pretty specific as in that burning feeling.

What kind of testing have you had for the diagnosis of TOS? Delaying surgery because of fear is only making things worse because you are creating more damage which means a longer recovery.

With drs guidance you could back down on the meds ,as a test , to see if your pain level rises or not..

But too, the meds may control the pain so you can keep working , BUT, working is probably causing more pain & increasing the severity of your TOS.

Even if you have expert PT while working , it really cannot offset the damages incurred every day..IMO
Unless your work is not a factor in your TOS & not aggravating any symptoms..

My TOS story has always been about pain. My symptoms were almost all pain; occasionally I had some tingling in my pinkie but it started with neck and shoulder pain and progressed. I stay home with my small kids but would not have been able to hold a job. I have been basically on bed rest for 6 months.

Since my rib resection surgery 1.5 weeks ago, my pain levels have decreased. Yes the incision site hurts and I'm sore but overall I feel better. My body is clearly healing from the insult of surgery but it solved the underlying problem. I am still on vicodin but reduced the other pain medications and muscle relaxants that I was on before. My muscles hurt now but it's from being used after a long time. The relief is unbelievable. Obviously everyone's case is different but I wanted you to hear that sometimes surgery reduces pain.

Hello, I'm 3 days post op of my second resection. I thought like you, what if it's all in my head. It wasn't and now other than post surgery pain I'm TOS free and it's a fantastic feeling.

(JK!)
I think you've asked some good questions. Maybe you're not quite ready for TOS surgery yet, in your heart of hearts. Really doesn't matter what Dr. Sanders, your pain doc or even your husband thinks… this is all about y.o.u.! Then again, it's perfectly normal to have doubts, second thoughts and yes, fears, going into something major like neurovascular surgery.

Regarding the opioids, the fact that you don't experience any euphoric effects probably means that you're not addicted to them. Physical dependence is different, and it's the nature of the beast I think that we do build up a tolerance to these meds. Your goal of getting off of them after surgery is a good one; just don't try it too soon! And, of course, do it by titrating down under your pain doc's supervision…

But I, for one, don't quite buy into the argument that our brain throws us into more pain once it realizes we have an outside source for those precious endorphins and shuts the factory down. Not 100%, anyway, although I will concede there's some logic to it. To me, it's far more likely that what you're experiencing is a flare-up in your TOS pain levels the past couple of months. (Your anxiety over the surgery isn't helping, either, I'll wager! )

Pain is such a subjective thing. Doctors are supposed to give you the benefit of the doubt when you report painful symptoms, but they really can't tell if it's "all in your head," when you come right down to it. Part of the reason docs are so skittish right now about prescribing this class of meds is that addicts are so good at faking symptoms and wrangling prescriptions! Makes it hard on those of us for whom there is a legitimate need.

I'm going to assume you've already tried a good course or two of TOS-savvy PT, Botox injections, nerve blocks, chiropractic, bodywork and/or other modalities less invasive than surgery up 'til now to treat your TOS, but are still finding it unmanageable. You can always put the brakes on if there's something else you'd like to try. Not like they can glue that rib back if you change your mind later!

Dr. Sanders is no slouch! I'm sure he would not be recommending surgery for you if he did not sincerely believe that to be the best course of action in your treatment plan. Dr. Annest will be performing your surgery, correct? He was my TOS surgeon back in 2005. What a character he is! The nurses at Pres/St. Lukes call him 'Dennis the Menace' behind his back. They just adore him (means you'll be getting really good care there!).

Wishing you all the best for a great outcome and an awesome recovery. Keep posting here to let us know how you're doing, OK?

Alison

I had surgery done and it worked!!! At John Hopkins they do couple tests before surgery to prove that that's what it is .

Sorry I have not replied to everyone sooner. I really appreciate all of the great advise and good news surgery stories.

I tried to lower my med intact (not all!) to see how I would do. Let me tell you, that was a MISTAKE! Even with that little bit, it cause me so much more pain. I started back up and still don't fill like I am back to the pain management I was before. I have missed 8 days of work the last 3 weeks eek!

Nellyzen: I had a lot of different tests to diagnose TOS. I think what really proved it to me was that Lidocaine Shot. It was like heaven for those few minutes. he gave me one shot, did the tests again and I was 70% better, then he gave me another one in my chest and it was ... Amazing. I was so sad when he told me it was temporary. The decision to wait for surgery was because I was back to work full time and able to live a good life with my meds. Things are different now because my pain has increased so much.

Sea Pines 50:

Yes, I have tried everything! Dr Sanders says I am a good candidate for the surgery because of the relief I felt during the Lidocaine test. I trust Dr. Sanders. After my debacle of a test with my meds, I feel much more confident that there is something wrong with me.

I can't tell everyone how much all the support and kind words have meant to me. I have always felt alone dealing with this and it is wonderful to learn that I am not. Though I do wish no one else had to deal with the pain.

Thanks again.