[cheryl1593]

Hello fellow tosers,

I am 10 year TOS survivor, bilateral cervical ribs/bilateral first rib resections.

I just have a quick question, I tried to find some threads concerning chronic pain, I did read many here still have pain after surgeries. My new pain management doctor is questioning why I have so much pain and wants documentation of where my pain is originating from. I told him about my surgeries and he still wants documentation of where pain originates. So I went to neurologist and had EMG which was normal (that hurt and caused a flair up), then I went to a brachial plexus specialist who said my brachial plexus was functioning correctly and he didn't think my pain was coming from there.

I believe my pain is from EVERYWHERE, shoulders, neck. I have had pain since before my surgeries. The only difference is that the HORRIBLE nerve pain from nerve trapped by cervical rib is gone. I understand that the nerve is not trapped anymore which would explain a normal EMG.

Where the surgeries were done and my shoulders still hurt at about a level 6 on scale 1-10. It does bounce around due to weather or stress. I have not ever been pain free. Seems to me that TOS is a syndrome that creates pain and does not ever resolve.....that it just needs to be managed, like I have done the last 10 years.

I think due to the problems with crooked pain management issues the pain doctors now want definitive diagnosis for any pain syndrome they treat....like an exact diagnosis.

I do not know what to do or where else to go. I don't have active TOS as I had the surgery already, I just don't know how to get my current condition diagnosed for my pain management doctor.

If anyone here has any ideas they would greatly be appreciated, I am just so confused. It seems I could figure this out as I am a nurse. I just don't know what to do next. Maybe a TOS doctor?? or would one see me if I don't have cervical ribs anymore.

Also do most TOS patients have chronic pain? and are we considered TOS patients if we don't have TOS anymore following surgery.....if we are not TOS patients anymore what are we? Aliens?

any help would be so much appreciated, thank you in advance.

[heybro]

It sounds very much like the problem is NOT You but Them. Since you don't fit in to their boxes, then they don't know what you are. That is anti-scientific and anti-humanity and anti-love. I am sorry, I do not have an answer but I do understand and I do want to hug you.

[cheryl1593]

Originally Posted by heybro

It sounds very much like the problem is NOT You but Them. Since you don't fit in to their boxes, then they don't know what you are. That is anti-scientific and anti-humanity and anti-love. I am sorry, I do not have an answer but I do understand and I do want to hug you.

Heybro that was very nice of you and I appreciate you reading my post. I will figure this thing out somehow, I have to to get the treatment I need.

[nospam]

Many NTOS patients develop chronic pain. Even after surgery scarring and myofacial trigger points develop/remain. In some cases, fibromyalgia or a fibro like hypersensivity (chronic pain syndrome) can develop. For me, I developed rotator cuff bursitis/tendinitis which worsened post surgically.

I recommend finding a pain management doc who is also a neurologist. Also consider seeing an orthopedic shoulder specialist.

For me, the best treatment for scarring and trigger points has been medical massage therapy (not spa). Trigger point and nerve block injections may also be indicated. My rotator cuff tendinitis is managed with cortisone injections and scapular postural correction.

[ginnie]

Your doctors are not addressing your concerns. They figure you had the sugery and should be just fine, after all they fixed you. NO NO NO....many of us who have had surgery, for TOS or spinal fusions, suffer afterwards profoundly. You need to find a doctor who is with pain management who won't dismiss you just because you already had the surgery. This is the doctors fault, not yours. Nobody goes around hunting for doctors just to bug them. Besides we all have alot more to do in life than just hunt for doctors. Nobody wants to do that.....I get very frustrated myself for the folks that are turned away, when there is pain. Keep that pain journal, listing all the symptoms, when, where, severity. Takes someone with you to your next appointment when you present it. Doctors pay attention a bit better, when someone near you backs up what you have been experiencing. Not all doctors are jerks. I found a physiatrist, whos first priority is pain management. I have been informed that a physiatrist, has a choice in their area of specialty, so ask by phone before you go in. I interviewed 4 docs. before I found the great doc. I have now. I am sorry you are suffering. Please keep on trucking to find that doctor willing to listen and treat you. Pain takes away quality of life. You may want to tell him that. I will keep you in my thoughts and prayers. ginnie

[cheryl1593]

Originally Posted by nospam

Many NTOS patients develop chronic pain. Even after surgery scarring and myofacial trigger points develop/remain. In some cases, fibromyalgia or a fibro like hypersensivity (chronic pain syndrome) can develop. For me, I developed rotator cuff bursitis/tendinitis which worsened post surgically.

I recommend finding a pain management doc who is also a neurologist. Also consider seeing an orthopedic shoulder specialist.

For me, the best treatment for scarring and trigger points has been medical massage therapy (not spa). Trigger point and nerve block injections may also be indicated. My rotator cuff tendinitis is managed with cortisone injections and scapular postural correction.

Thank you nospam, I was pretty sure that TOS just causes pain period. These doctors just really make me want to beat them up so I can finally feel better. lol

I do see a new pain management doctor and he is the one needing documentation of WHY I have pain. He is not a neurologist though. I go to see a shoulder doctor in a few months so maybe he can give my pain doctor what he needs.

The whole pain management thing is just getting ridiculous now with the problems of people selling medicine on the street. I never had problems in the past as I have verified reasons for pain.....all aliens have pain!

I was even born in roswell new mexico, so I am pretty sure I am alien of some sort.

Funny that I worked as a nurse for 20 years and only saw one other person with C-ribs and extra parts like me. but wow what a bad place to have a defect, that bracial plexus sure can generate lots of pain. I am doing really well considering my situation and I only need little bit of pain medicine and I am ok. Just seems that to get pain management everything has to be EXACTLY documented.

If the shoulder doctor does not help me then I will have to go to a TOS specialist here in houston. It sure is gonna be weird when I ask a new TOS doctor why my back hurts duh!

thanks everyone for taking the time to try to help me.

[16rhonda]

Originally Posted by cheryl1593

Hello fellow tosers,

I am 10 year TOS survivor, bilateral cervical ribs/bilateral first rib resections.

I just have a quick question, I tried to find some threads concerning chronic pain, I did read many here still have pain after surgeries. My new pain management doctor is questioning why I have so much pain and wants documentation of where my pain is originating from. I told him about my surgeries and he still wants documentation of where pain originates. So I went to neurologist and had EMG which was normal (that hurt and caused a flair up), then I went to a brachial plexus specialist who said my brachial plexus was functioning correctly and he didn't think my pain was coming from there.

I believe my pain is from EVERYWHERE, shoulders, neck. I have had pain since before my surgeries. The only difference is that the HORRIBLE nerve pain from nerve trapped by cervical rib is gone. I understand that the nerve is not trapped anymore which would explain a normal EMG.

Where the surgeries were done and my shoulders still hurt at about a level 6 on scale 1-10. It does bounce around due to weather or stress. I have not ever been pain free. Seems to me that TOS is a syndrome that creates pain and does not ever resolve.....that it just needs to be managed, like I have done the last 10 years.

I think due to the problems with crooked pain management issues the pain doctors now want definitive diagnosis for any pain syndrome they treat....like an exact diagnosis.

I do not know what to do or where else to go. I don't have active TOS as I had the surgery already, I just don't know how to get my current condition diagnosed for my pain management doctor.

If anyone here has any ideas they would greatly be appreciated, I am just so confused. It seems I could figure this out as I am a nurse. I just don't know what to do next. Maybe a TOS doctor?? or would one see me if I don't have cervical ribs anymore.

Also do most TOS patients have chronic pain? and are we considered TOS patients if we don't have TOS anymore following surgery.....if we are not TOS patients anymore what are we? Aliens?

any help would be so much appreciated, thank you in advance.

Have u been back to tos surgeon? He should be able to tell u if ur sx are from tos still
If ur sx got better after surgery, then became worse around 6 mos. Postop, it could be from scar tissue. This is what my thoracic surgeon told me.

[20YrsTOS]

Originally Posted by cheryl1593

Hello fellow tosers,

I am 10 year TOS survivor, bilateral cervical ribs/bilateral first rib resections.

I just have a quick question, I tried to find some threads concerning chronic pain, I did read many here still have pain after surgeries. My new pain management doctor is questioning why I have so much pain and wants documentation of where my pain is originating from. I told him about my surgeries and he still wants documentation of where pain originates. So I went to neurologist and had EMG which was normal (that hurt and caused a flair up), then I went to a brachial plexus specialist who said my brachial plexus was functioning correctly and he didn't think my pain was coming from there.

I believe my pain is from EVERYWHERE, shoulders, neck. I have had pain since before my surgeries. The only difference is that the HORRIBLE nerve pain from nerve trapped by cervical rib is gone. I understand that the nerve is not trapped anymore which would explain a normal EMG.

Where the surgeries were done and my shoulders still hurt at about a level 6 on scale 1-10. It does bounce around due to weather or stress. I have not ever been pain free. Seems to me that TOS is a syndrome that creates pain and does not ever resolve.....that it just needs to be managed, like I have done the last 10 years.

I think due to the problems with crooked pain management issues the pain doctors now want definitive diagnosis for any pain syndrome they treat....like an exact diagnosis.

I do not know what to do or where else to go. I don't have active TOS as I had the surgery already, I just don't know how to get my current condition diagnosed for my pain management doctor.

If anyone here has any ideas they would greatly be appreciated, I am just so confused. It seems I could figure this out as I am a nurse. I just don't know what to do next. Maybe a TOS doctor?? or would one see me if I don't have cervical ribs anymore.

Also do most TOS patients have chronic pain? and are we considered TOS patients if we don't have TOS anymore following surgery.....if we are not TOS patients anymore what are we? Aliens?

any help would be so much appreciated, thank you in advance.

Cheryl, I'm sorry u are dealing with so much pain. I know what you r going through. Sometimes these doctors do not know what's going on and they are grasping for straws. Don't just accept no, keep looking for help. Pain is normally a sign that there is something wrong somewhere. Maybe a chiropractor can adjust u, but there is something there. Just a FYI, I'm seeing a Dr. Peter Lin in Houston for my TOS. May GOD bless and heal you.

[olecyn]

Exactly! SCAR TISSUE build up and CRPS is the grand daddy of them all from the surgery(s) we have been thru and duration of the neurological pain. If your pain management doc and surgeons are not providing relief bring up the items nospasm mentioned with your attendings.

[chloecasey]

Originally Posted by cheryl1593

Thank you nospam, I was pretty sure that TOS just causes pain period. These doctors just really make me want to beat them up so I can finally feel better. lol

I do see a new pain management doctor and he is the one needing documentation of WHY I have pain. He is not a neurologist though. I go to see a shoulder doctor in a few months so maybe he can give my pain doctor what he needs.

The whole pain management thing is just getting ridiculous now with the problems of people selling medicine on the street. I never had problems in the past as I have verified reasons for pain.....all aliens have pain!

I was even born in roswell new mexico, so I am pretty sure I am alien of some sort.

Funny that I worked as a nurse for 20 years and only saw one other person with C-ribs and extra parts like me. but wow what a bad place to have a defect, that bracial plexus sure can generate lots of pain. I am doing really well considering my situation and I only need little bit of pain medicine and I am ok. Just seems that to get pain management everything has to be EXACTLY documented.

If the shoulder doctor does not help me then I will have to go to a TOS specialist here in houston. It sure is gonna be weird when I ask a new TOS doctor why my back hurts duh!

thanks everyone for taking the time to try to help me.

Cheryl

I agree with nospam & olecyn.....a neurologist will likely help if nothing else diagnosing the nerve pain....I have had pain,tightness & strange sensations at my surgical site from the get go and now my situation has progressed to what I believe is Peripheral Neuropathy? or CRPS? as it affects my arms and legs especially at night while sleeping....so I have just scheduled an appointment with a neurologist who also specializes in neurophysiology, this is someone who if I am understanding it correctly is able to connect what is going on in relation with the central system and the peripheral nerves. I am just under 3 years post surgery and have not had much luck in any one giving me answers.
As far as the brachial plexus if those nerves are messed with too much that when they try to heal scar tissue can cause pressure on those nerves and that equals nerve pain.