So I Have A Cervical Rib...
 

Went back to Dr Michael Donahue at Mass General a couple weeks ago. Last we had left it prior to summer, he had told me that I had an elongated transverse process on C-7 per their special CT Scan, but considering that my symptoms were diminishing to see how it goes and checkin during the Fall. He had mentioned that if "I can't get over the hump" with my own stretching routine, we could look into the CT guided botox injection. I felt like I couldn't kick this thing so I went back to his office.

Dr Donahue then showed me the CT Scan and to my dismay he went on to show me that not only do I have an elongated transverse process, but I also have a cervial rib that has formed. Ugh! The dreaded extra rib.

So we're going down the path to explore the CT guided botox injection in the scalene muscles. He's indicated that many times this works for about 2/3's of his patients. That said, it's a pain in the neck to get the insurance company to approve, but it's in process anyways. I'm not in excruciating pain so it's not critical that I get it done asap.

Anyways, I'm a bit disturbed by this new finding. My situation came on two years ago when I suffered some kind of upper trap/shoulder injury. This, combined with me being in a wound up/tight state due to bodybuilding along with being way too internally rotated seemed to be the perfect breeding ground for TOS. The cervical rib must be the icing on the cake. Add all those variables to the rib and bam...radiating scap pain and pain down to the elbow.

Now, as Dr Donahue explains it, I lived a good 41 years of my life with a cervical rib and without any issue whatsoever. He also thinks that since my symptoms have gotten much better over the last few months due to my own stretching and strengthening work it's very possible that I'm in the process of unwinding this whole situation.

I guess the question I have to the group, especially those with cervical ribs is, once your TOS symptoms emerged, did you find a way to put those symptoms into dormancy? Or is it a situation that you just have to manage as best you can because once it's "out of the box" it's just out there for good?

What I fear is that this is a situation...without surgery...that's something I have to manage very carefully...forever...while dealing with pain here and there. And worse case, it's really inevitable that I have to get a rib resection. I'm 43 right now and in the best shape of my life. As each day/year goes by, I'd imagine that this situation deteriorates.

Anyways, any thoughts would be helpful.

Thanks.

KY

i don't have any good advice, sorry :(

but just wanted to comment that is terrifying that they can discover ribs, i thought it would be fairly obvious!

best of luck to you

I think it's very cool that your vascular surgeon is taking your recovery step by step with an emphasis on conservative approaches. It sounds like you're in good hands. I think you need to work with the process as it develops and not worry as much as you are.

As far as bodybuilding goes... I feel betrayed by exercises like dips, shrugs and push-ups that tighten up and compress the body. My new religion is therapeutic exercise and stretching.

I realize what you're really wanting to find out is what people with cervical ribs have experienced. I hope they chime in for you.

Given that you have an anatomical reason for developing TOS, you may fare better with surgery but it's no guarantee.

Personally, when I went through this the first time around, I was pre-disposed to TOS due to the bony abnormality involving the 1st rib. It took an event to "excite" the TOS and it never calmed down. Once started, it continued downhill. The only relief I had in 21 months from the trigger event to surgery was the month after the botox shot. I had complete relief for 4 weeks and it was great! When it wore off, the TOS symptoms returned with a vengence. I opted for surgery and I'm glad I did. This doesn't mean you will have the same results.

I have TOS on the other side now and I have a cervical rib on that side. Lucky me to have two different anatomical reasons for being prone to TOS. :rolleyes: Despite the good outcome I had on the right side, I'm hesitant to go the surgery route again. I don't feel like taking another gamble.

Chroma,

I hear you on dips. I'm convinced they helped trigger my initial injury.

What are you doing now in terms of exercise?

I've really picked up the pace despite my situation. I'm lifting pretty heavy and frequently. That said, I have noticed my ol' elbow pain starting to pick up again ever so slightly which tells me that the compression is increasing. Still, I'm talking about a pain level of maybe 1.5 on a scale of 1 to 10. Probably need to cool it.

KY

Right now, the level of pain doesn't warrant surgical intervention. It's manageable. That said, this recent cervical rib finding plus a recent slight pickup in pain has me concerned that I start heading in the wrong direction.

The botox shot, if approved, will be interesting. Dr Donahue explained that sometimes this is all that's needed to "break the cycle" of tightness. And as you say, maybe this cleans out the "excitement." I guess we'll see.

I actually have a similar bony abnormality on the left side, but it is far less pronounced. The cervical rib is smaller and doesn't extend too far.

KY

Well I have circulation issues, so I'm taking it really slow. My current routine:

-- Some very light weights with few reps. No dips or shrugs.

-- Qi gong, but with modifications as needed to work around my issues. Mostly avoiding raising the arms overhead too much and reducing the circumference of any arm circles.

-- "Postural" and "therapeutic" exercises that come from Egoscue, PT articles, and "Fixing You: Neck Pain & Headaches".

-- I finish up with some sitting meditation with the arms propped up, and then static back.

I usually feel pretty good after the above.

Overall, my arm symptoms are minimal and pain is way down. Dizziness remains a problem.

Hi there,

Interesting to read this thread, as I'm currently under the care of Dr. Donohue at MGH as well. He's the fifth doctor I've seen in the area about this condition, and I'm really hoping his care can assist my symptoms.

I am waiting for news regarding my Botox injections. My CT, EMG, nerve conduction studies, and x-rays all came back normal. My vascular study showed definite lack of circulation, and my symptoms continue. Dr. Donohue hopes that the Botox may do the trick...we'll see.

I've been really pleased with his care thus far. I hope you are too! :)

Can either of you find out and share how much the CT guided botox injections cost?

Sounds as though you have an ethical doctor. Feel blessed--only 1 in about 500 or so have that extra rib. AS your doctor recommends, if it ain't broke, don't fix it. I' assuming that this extra rib has some fibers of anterior scalene attached to it. Scalenes lift those 1-2nd ribs so you can breathe through the upper part of your thorax, so this extra rib is just hanging around, no muscle to move it, I would think that it would have been noticed long before now.

The best treatment bar none for sporadic TOS is trigger point therapy during a massage therapy session. If it were caused by the rib, it would be always present, no let up. Since it comes and goes, IMO it is caused by TrPs in scalenes of the lateral neck, pectoralis minor of the chest, and occasionally by the corachobrachialis that arises from the same attachment as the pec minor and attaches to the medial side of the humerus, about halfway down the arm.
A good NMT (trigger point) practitioner can locate and release those trigger pints in about ten minutes.

I agree with your doctor: surgery should always be the very last resort, because the cure is often worse than the disorder. Ask my wife: she's had three back surgeries and is in much worse pain than the mild discomfort she sometimes felt before the first surgery.

Hi there, Chroma,

I've been following up with his office every couple of weeks to check on where the insurance company situation stands. The next time I call, I will ask how much they are without insurance. I'm not sure if it depends on where you get the injection(s), but hopefully they can give me a ball park figure.

Are you thinking of you getting Botox as well?

I saw Dr. Donahue last March. He recommended the botox injections. Warned me that it can take weeks to months to get it approved by the insurance.

Called the office to check on the insurance stuff every few weeks, as they did immediately reject them. Was told it was in the works.

Until 3 months later when I called my INSURANCE to check on them. Found out they had never had a single thing sent from Donahue's office in all that time. Called them twice again before talking to Kathy at the Salem office, she's the one that does the insurance stuff. She tried to tell me it was the insurance holding things up, until I assured her I had had several long phone calls to my insurance verifying that they had received NOTHING from her. She suddenly stopped arguing with me and said "in any case" she would try to have it done the next day. Didn't hear from her for a week. Then she called and said they (office) had done their thing, it was rejected, and *I* had to file the appeal. Called the insurance, they said the DOCTOR could do the appeal, since it required lots of medical data, and all I had to do was send a letter giving doctor's office permission to appeal on my behalf.

Meanwhile, accidentally saw Donahue's report to my local doctor, saw he was referencing an MRI that was not mine (I hadn't had one before seeing him, and had even mentioned that to him while there, asking if I should have one, and he said no, not yet), and whosever it was had a cervical disc problem I do not, and so the whole report reference pain shooting from my neck down my arm, that I also do not have. My husband was with me during the whole exam & consult. He heard every word, and I did not, NOT, describe anything like those symptoms.

When I finally got him to call me to tell him of this mistake, several weeks later, he dumped me. Apologized for the mistake, but refused to take responsibility for it. If we "didn't connect" so badly that he got it all wrong, he said, he was not the doctor for me.

So, after blowing 4 months of my life, I was back to square one. No doctor, no clear picture of the problem, no treatment plan, no nothing. Looked up a dr in NYC and started over at the end of August (took that long to get an appt).

We made no summer plans because, supposedly, at any time we could get the call that I needed to go back to Boston for the botox injections or other procedures or surgery. Foolishly wasted my kids' entire summer on completely false hopes of getting something done for me.

Now, I now lots of people have wonderful things to say about Donahue. And I did too, until that final phone call. I thought he was thorough and careful and concerned. Until he dumped me when confronted with the mistakes in his report. I don't know why everything went so terribly wrong in my case. I don't know if he himself is aware that the months of getting insurance approval may be actually months of inactivity on his staff's part.

But I would recommend calling your INSURANCE company to check on the botox injections, not his office. And it wouldn't hurt to get a copy of whatever he sent back to your primary (or other) doctor to make sure he got things right.

Sorry to be casting a shadow on the guy, but I sure wish I'd had a heads-up that he/they needed checking up on. Between waiting for him, and getting to the new dr and then the treatment he recommended, I lost April through September of this year.

Winic1,
I wonder how the wrong MRI got into your file?
If it wasn't fwd from one of your drs by accident, then his staff is really messing up...:confused:
Plus the non filed insurance paperwork....:confused:
How annoying when this happens....

Did any of your other drs send anything at all to Donahue?

That would be great.

Yeah my progress seems to have plateaued. While I have experienced numerous improvements, I still have a level of dizziness that I find unacceptable. I need to start planning out my next moves. Probably vascular appt and something like an MRA are next.

Nope. I, ME, sent him 8 discs ahead of time, and about 15 reports, and he asked me to bring 3 more discs with me at my appointment. These discs were copies I, ME, made of the originals, at my home. And verified each one before labelling it and sending/giving it to him. (I have copies of every scan and report I've had, found it easier to bring them with me than keep trying to have things sent on time. I have a typed inventory listing of each and every one, which are all numbered for easy reference. This list is 3 pages long now.)

But he insisted he had a disc with a cervical MRI from November 2010 with my name on it. Blamed my local hospital for sending it to him.

after talking to him, I called the local hospital testing center and checked. They never sent him anything, not one paper, not one scan. As I knew, because I never signed a release or anything like that. They also have NO MRI for that date for me, of anything, let alone my cervical spine.

When I called his office the next day to cancel the future followup appointment I already had booked, the secretary asked me why. So I told her, he messed up, he dumped me. She said wait, and pulled my file, and began reading off every disc she was finding in it. No cervical MRI disc. No kidding. Because it wasn't mine. Because I never had one done (until 2 months after seeing him, and he never was sent that one.)

Suspect he had someone else's file/scan open on his computer when he started going through mine, and failed to notice it had someone else's name on it. After all, the patient name and info is imbedded right in the pictures!. Or else he mixed up discs while looking at them, again failed to notice someone else's name, and then they got sorted out when putting things away. Dunno. Hope he didn't mess up diagnosis/interpretation on the other person (who has significant disc problem at C6) like he did on me, or someone else got screwed in the deal, also.

Dunno. But having recently encountered such a huge error, and lack of action from his office re the insurance, I would highly suggest you all keep outside checks going on them, don't just trust the offices there.

The estimate they gave me for the botox was around $800. You get a discount for paying up front (the day before), I think it was 10%, might be more (I'm remembering 10%, but then I'm also remembering it was $200 cheaper to pay up front, which would be 20%. Dunno, and unfortunately, no longer have any reason to care. Sorry.)

I have a cervical rib and have had symptoms since I was a teenager, probably when the cervical rib was growing and attaching to my first rib. I was finally diagnosed in my early thirties. At that time, I was told it was "up to me" and advised that the cure can be worse than the diagnoses, ever since I have been managing my symptoms with yoga practice (for which i have gained a 1/2 inch in height) and massage and acupuncture when I have flare-ups. This last February, I was rear-ended and suffered whip-lash and seat-belt compression across the collarbone, so I revisited my issues with new doctors. Over the last 5 years, I have had 3 surgeons tell me to get the surgery, one say no, and to PTs tell me no. But here's my issue with your situation: you had no symptoms until your 40s.

I honestly believe that your body-building (combined with having a rib-extension) has had more to do with your developing your problem, then anything else. It's time to bulk-down, focus more on stretch principles and look into Postural Restoration (PRI). This is in the US, but it's an amazing approach that I think all non-cervical rib TOS'ers should do.

This is assuming that you do not have arterial/venous blood supply issues. I have bi-lateral cervical ribs. My left side, I can cut off my blood supply just by raising my arm into certain positions, my right side has none of these issues. I am likely getting Sx on the left and (hopefully) never on the right. I am going to one more PRI training this weekend, and this will be a great factor in determining what I am going to do. But, my Dr's have said this is the one and only reason they are suggesting the Sx. If I didn't have blood supply issues, I wouldn't even consider Sx.

I think I will end up getting the Sx because over the last 30 years, it has gotten progressively worse, and even Jack Lelanne's body was not as tall and straight when he died than when he was in his prime. So, for me, it's a matter of getting it while I am relatively young (39), very fit, and able to recover versus doing it when I am in my 60-80s and healing less well.

For you, it might be as simple of a solution to return your body to a more "normal" stasis. Very few body-builders spend equal time stretching. I am also curious if you have used artificial enhancement techniques? I don't need an answer, most won't admit to it, but you know and this might also be a factor to consider or eliminate from your practice.

Good luck, hope that helps in your equation. :grouphug:

Hmmm..... does anyone know if a cervical rib can just grow and form? I am really curious!

From what I understand it's not something spontaneous. It's something congenital. That said, it can osteosclerosis over time.

Concolor,

Thanks for the detailed response.

I'm interested in what you've investigated in terms of postural restoration? Is PRI a specific place you can look into this? Get help?

It's important to understand that once I learned that I had TOS I started doing all kinds of stretching. More specifically, anterior and middle scalene stretches, pec minor stretching, and diaphramic breathing / posterior neck crunches on a foam roller. My symptoms decreased immediately from say, a 3-5 on the pain scale to a 1 level. And oddly enough, my shoulder impingement cleared up as well. There's no doubt I was tightly wound up.

Now, I've continued with this stretching routine, but I can't seem to get over the hump.

Additionally, I feel like "postural stress" is more of a culprit at this point vs. going to the gym. My job is getting more intense and I find that when I'm in the office everything starts to flare a bit. Then when I work at home, and have time to go to the gym, I actually feel better.

All that said, a gym injury started this whole thing -- a latpulldown injury just seemed to trigger it.

I'm a lot better than where I was a year ago. The pain is more than manageable, but I really want to finish this off. I think it could be a combination of things that allow this to happen: A botox injection to "break the cycle," maybe some ongoing postural restoration efforts, tissue work (that another poster mentioned), and maybe altering my gym efforts.

It is odd that this TOS emerged after 40 and it seems that now that the area has been "excited" it doesn't want to leave.

Thanks.

KY

Let me know how your progress goes with the botox.

It's been 2+ weeks since I was with Dr Donahue and I will be checking in on Monday to see where this is. Understanding winci's problems with the process, I'm hoping we can learn from this and avoid some snafus.

KY

Gary,

Can you explain a bit more where this tissue work would be done? I've been to many PTs and they're all horrible.

I can tell you that when I wake up in the morning the area just below the collarbone where my pecs are located are really tight. The right side of my neck is as well. Every morning I do the following and gradually loosen things up:

1. Right and left neck twists (light)
2. Posterior neck bend (light)
3. Anterior scalene stretch (more rigorous)
4. Middle scalene stretch (more rigorous)
5. Pec minor stretch
6. Shoulder rolls (back and forward)
7. Diaphramic breathing on foam roller, neck crunches

This usually gets me going in the right direction.

Would tissue work just above and below the collarbone be of help? Forget what this is called...costocavicular area maybe? Pec minor, subscapular work?

The trick is finding somebody good in the area who has experience with TOS issues. I feel like I'm just cattle sometimes with these PTs and they just do the same thing they'd do to others.

KY

I obtained a handout on postural exercises. It included "shoulder rolls" that went up and then back, but specifically advised against forward shoulder rolls saying:

"Do not roll forward. This causes impingement and unnecessary risk to the shoulder joint."

Of course, having TOS, words like impingement really catch my attention. Otherwise I think your routine looks great.

I also use a heat pack on my neck prior to stretching. I get a better stretch and it's more comfortable.

What about those neck crunches? You don't prefer to end on a stretch?