Disappearing cervical ribs but TOS Dx

[McRiblet]

I am finding that every trip I make to any Dr just leaves me more confused. I finally got my referral to a Thoracic Surgeon, Dr. Ryan Levy with UPMC in Pittsburgh. He required a chest CT be done before our appt. Two hrs after I had the scan, they scared the heck outta me by calling and telling me our meeting was now scheduled for Hillman Cancer Center.

I went to the Cancer Center. Very emotional place to be. Not knowing what was going on, or why they had sent me there. We waited about an hr for a room, which doesn't bother me. When I was finally taken to a room, I gave the nurse my CT disc, which she lost because they kept poking their heads in asking me was I sure I didn't have it. After waiting in the room about another hr, the Dr. finally comes in.

He tells me I have a nodule in my left lung but he is not worried about that because I am a non-smoker. He did the usual poking and "does it hurt here" routine, then had me stand and tip my head completely back and turn it to each side, which just felt tight in my neck, no big deal. Then he told me to do a military stance and pull my shoulders down to the ground. My arm went tingly.

He informed me he doesn't see any cervical ribs in my CT. I said the x-ray at my ER had found them when I had my thoracic sprain and they said I had one on each side. He laughed and said he doesn't know where they got that from (totally ruins my username lol). He called me "mildly positive" for neurogenic TOS and wrote me a script for physical therapy, which I start in two days. The appointment felt lacking.

He said he is going to check my two previous EMG's, which were both negative (they tested from the elbow down both times), and if he feels they were done improperly he will have another one done and have me meet with a Neurologist. I won't hold my breath.

Has anyone else had a false positive of cervical ribs? I mean, they had to have seen something to tell me that in the first place, right? Is it possible the CT didn't get them? I'm confused. I was sooo sure I had TOS based on the info that I had cervical ribs and now he's telling me I don't have them but I do have TOS and I'm left thinking what is going on here?!?!?

[Jo*mar]

I'd try to get a copy of those x rays...if it hasn't been to long you should be able to request copies of the images and the report.

Other members have had their cervie ribs missed on imaging, so it is possible.
Best to get copies of everything, so as you go to other drs you have the images/reports in hand, saves a lot of duplicate testing, money and time.

EMGs - if they only did the lower arm, you probably will need the whole c spine & arm. Although usually it will be negative unless there is severe damage already.

[winic1]

If it seems they had "lost" your disc temporarily, I would check the report on it yourself. When they "found" it, they might have "found" someone else's.

It happens a lot more than you'd think. I had a big name dr at a big name place mix someone else's disc in with mine, and plan his treatment for me based on a problem I didn't have. I had an orthopedic doctor come back into the room after looking at my report and disc, and tell me my knee was completely shot with arthritis, cartilage gone, nada left, in places, so when I was old enough I would need a replacement, but until then, oh well, so sorry, nothing to be done. But when I got a copy of his report, he said only some mild cartilage damage (confirmed by a better doctor later on). All I can figure is some poor woman in the room next to me got told she was fixable with a little physical therapy, when in fact that could only do her harm and she had replacement surgery in her future. I had a neuro-ophthalmologist once leave me sitting alone in a room for nearly an hour (after 3 hours of testing), a nurse found me and thought the doc had been talking to me already, so sent him in where I got about 3 minutes summary and sent on my way. When I got a copy of his report a week later, there was an extensive paragraph detailing an extensive discussion we evidently had, only he never had it with me (in fact, that paragraph was in a different size and font and print darkness and margins than the rest of the document, and literally looked like it had been cut out and taped in from something else before being run through the copier), guessing he may have had it with another patient (or maybe he was just napping for that hour...)

These are just some highlights on mix-ups I have encountered. They happen way more often than you'd think. So check up on your missing ribs. Someone, either this time or on your previous x-rays, has screwed up.

(Either that, or figure out how you did it, you might just have the cure for rib resections--make them vanish instead!

[McRiblet]

Originally Posted by Jo*mar

EMGs - if they only did the lower arm, you probably will need the whole c spine & arm. Although usually it will be negative unless there is severe damage already.

When I had arrived at the office for my second EMG, I guess I was supposed to have a copy of the order. My Dr never gave it to me. They called his office and spoke to them. Then I was taken back for the test. She said she was going to test neck and shoulder area. I told her I supposidly have cervical ribs, didn't know if that would make any difference. She didn't know what they were. In the middle of me describing my symptoms (didn't get to finish), she decided it sounded like what she had when she tore a tendon near her elbow and suggested that was where my problem was. I told her that the previous EMG was elbow down and it was to look for tennis elbow and carpal tunnel and was negative. She insisted he didn't do the test right, so she did elbow down again.

[McRiblet]

Originally Posted by winic1

If it seems they had "lost" your disc temporarily, I would check the report on it yourself. When they "found" it, they might have "found" someone else's.

It happens a lot more than you'd think. I had a big name dr at a big name place mix someone else's disc in with mine, and plan his treatment for me based on a problem I didn't have. I had an orthopedic doctor come back into the room after looking at my report and disc, and tell me my knee was completely shot with arthritis, cartilage gone, nada left, in places, so when I was old enough I would need a replacement, but until then, oh well, so sorry, nothing to be done. But when I got a copy of his report, he said only some mild cartilage damage (confirmed by a better doctor later on). All I can figure is some poor woman in the room next to me got told she was fixable with a little physical therapy, when in fact that could only do her harm and she had replacement surgery in her future. I had a neuro-ophthalmologist once leave me sitting alone in a room for nearly an hour (after 3 hours of testing), a nurse found me and thought the doc had been talking to me already, so sent him in where I got about 3 minutes summary and sent on my way. When I got a copy of his report a week later, there was an extensive paragraph detailing an extensive discussion we evidently had, only he never had it with me (in fact, that paragraph was in a different size and font and print darkness and margins than the rest of the document, and literally looked like it had been cut out and taped in from something else before being run through the copier), guessing he may have had it with another patient (or maybe he was just napping for that hour...)

These are just some highlights on mix-ups I have encountered. They happen way more often than you'd think. So check up on your missing ribs. Someone, either this time or on your previous x-rays, has screwed up.

(Either that, or figure out how you did it, you might just have the cure for rib resections--make them vanish instead!

I would love to be able to make the ribs vanish! Poof! No more pain!

I am relieved to know I am not alone in the world of medical mix-ups (if that is what happened to mine), but it is also sad that these kind of things go on. I am going to have to learn to be way more vocal than what I am.

[nospam]

I hate that you are going through what many of us have had to. Most practitioners are ignorant in regards to TOS. I was lucky I have a good PPO insurance (CIGNA) and their website has a great search tool to show me who was in and out of network.

My neurologist was not experienced with TOS but he and another neurologist researched what to look for on the EMG (C8-T1 anomalies). I was able to gather all of my imaging and EMG results and start seeing vascular surgeons with TOS expertise. I started my search using google and then this list: http://surgery.wustl.edu/TOS_Consortium.aspx

Educate yourself on TOS and select your practitioners wisely. Find people who know more than you do. If you feel you know more...run in the opposite direction in regards to treatment. My neurologist is still my pain management doctor, but does not directly treat my TOS (nor did he attempt to do so).

I am blessed to have had successful bilateral rib resections and scalenotomies...as well as an experienced group of therapists to properly treat me.

Shout outs to www.niren-angle.com and www.andoaston.com