[tmartini27]

Hi everyone,

I am 4 1/2 months post op from a first rib removal and am still having considerable issues with pain in my neck and up to the base of my skull. All of the arm symptoms have resolved and I am definitely getting stronger but this ongoing daily pain is driving me crazy. I started PT 2 weeks after surgery and have been going twice a week but not really improving. I will see my third PT this week. My pain management doc gave me trigger point injections two weeks ago that caused a huge flare on the non TOS side that I still am recovering from. My surgeon says it can take 6-8 months for everything to calm down. My question is has anyone else had a similar experience? The pain doc wants me evaluated for cervical dystonia but I'm not sure that's what it is. It's just so frustrating because everyday I wake up and am in pain. Thanks!

[elap]

Originally Posted by tmartini27

Hi everyone,

I am 4 1/2 months post op from a first rib removal and am still having considerable issues with pain in my neck and up to the base of my skull. All of the arm symptoms have resolved and I am definitely getting stronger but this ongoing daily pain is driving me crazy. I started PT 2 weeks after surgery and have been going twice a week but not really improving. I will see my third PT this week. My pain management doc gave me trigger point injections two weeks ago that caused a huge flare on the non TOS side that I still am recovering from. My surgeon says it can take 6-8 months for everything to calm down. My question is has anyone else had a similar experience? The pain doc wants me evaluated for cervical dystonia but I'm not sure that's what it is. It's just so frustrating because everyday I wake up and am in pain. Thanks!

So sorry to hear about the ongoing pain and I hope it resolves soon. I'm wondering if you might share the name of your surgeon. Also, did you experience the current neck/head pain prior to surgery? Btw, trigger point injections never helped me - I tried multiple times with a number of docs - and generally caused major flare-ups. On the other hand, manual trigger point work has helped me somewhat. I have bilateral NTOS.

[nospam]

Originally Posted by tmartini27

Hi everyone,

I am 4 1/2 months post op from a first rib removal and am still having considerable issues with pain in my neck and up to the base of my skull. All of the arm symptoms have resolved and I am definitely getting stronger but this ongoing daily pain is driving me crazy. I started PT 2 weeks after surgery and have been going twice a week but not really improving. I will see my third PT this week. My pain management doc gave me trigger point injections two weeks ago that caused a huge flare on the non TOS side that I still am recovering from. My surgeon says it can take 6-8 months for everything to calm down. My question is has anyone else had a similar experience? The pain doc wants me evaluated for cervical dystonia but I'm not sure that's what it is. It's just so frustrating because everyday I wake up and am in pain. Thanks!

I have a similar experience but had cervical fusion surgery prior to my rib resections. Have you had an MRI of the cervical spine? The neck tension that comes along with TOS can make neck issues work (possibly even cause them).

[tmartini27]

Originally Posted by elap

So sorry to hear about the ongoing pain and I hope it resolves soon. I'm wondering if you might share the name of your surgeon. Also, did you experience the current neck/head pain prior to surgery? Btw, trigger point injections never helped me - I tried multiple times with a number of docs - and generally caused major flare-ups. On the other hand, manual trigger point work has helped me somewhat. I have bilateral NTOS.

Yes, I had the pain prior to surgery. About 18 months before actually. It started long before the arm symptoms. Dr. Gregory Pearl in Dallas did my surgery. From my own research it appears I need to do some strengthening and postural work for this to go away. It's just hard to stay positive when it's been almost 2 years since this all started.

[elap]

Originally Posted by tmartini27

Yes, I had the pain prior to surgery. About 18 months before actually. It started long before the arm symptoms. Dr. Gregory Pearl in Dallas did my surgery. From my own research it appears I need to do some strengthening and postural work for this to go away. It's just hard to stay positive when it's been almost 2 years since this all started.

Thank you for the response. I asked because neck/face/head pain are among my symptoms, also started long before the arm/hand symptoms, and are the most debilitating symptoms. Dr. Donahue at MGH has recommended surgery, but I'm on the fence, mainly because I fear that surgery will result in even worse headaches. Maybe not a problem for some with TOS, but I'm particularly headache prone. I understand how difficult it is to be positive (I've been dealing with this since 2009) and hope the pain issues resolve for you.

[tmartini27]

Originally Posted by elap

Thank you for the response. I asked surgery ecause neck/face/head pain are among my symptoms, also started long before the arm/hand symptoms, and are the most debilitating symptoms. Dr. Donahue at MGH has recommended surgery, but I'm on the fence, mainly because I fear that surgery will result in even worse headaches. Maybe not a problem for some with TOS, but I'm particularly headache prone. I understand how difficult it is to be positive (I've been dealing with this since 2009) and hope the pain issues resolve for you.

I understand completely. My headaches did improve after surgery but it took awhile. There was a time that they were worse but it was short lived. As far as the surgery goes, I felt like it went well and am happy to have full use of my arm again. My headaches as getting less frequent but the recovery is so slow. Good luck to you. It's a tough decision and everyone is different. That's what makes it even more frustrating to deal with.