2 cervical ribs!

[busywend]

That is right, an Xray yesterday revealed difficult child has 2 cervical ribs. These are abnormalities. Growths, if you will.

Anyone know anything about this?

Doctor's office is at a loss on what to do as they have called about 12 offices for referalls and everyone is turning us away!

by the way - .5% of the population has 1 cervical rib, having 2 is almost unheard of.

 

[Lothlorien]

I work for an ortho and have yet to hear this one. I looked it up....is she in pain? Thoracic Outlet Syndrome is what comes up and the most common side effect. She may need a neurosurgeon or spinal surgeon to evaluate her.

 

[DammitJanet]

Well...from what I can gather from just glancing through google, it appears it can cause some problems with weakness in the arms and neck, tingling and numbness, and something called Thoracic outlet syndrome. Maybe that is what you should be looking at. It seems like there is a surgical remedy but I dont know if that is something you would be looking at with her at her age if she isnt having symptoms now.

 

[busywend]

She wakes with numb arms most days, I assume from sleeping in a position that causes something to get constricted. In the last few days she has had pain in her arm which prompted the Xray. I should say she has had arm pain in the past that comes and goes. We have had the arm Xray'd before, but not the neck.

I also found those same google searches.
A spinal surgeon sounds like a good place to start. When I call the doctor back in the morning, if they are still scratching their heads, I will suggest - no demand - that she see one.

Thanks!

 

[witzend]

I would look at the teaching hospitals for a shoulder/elbow surgeon, or a thoracic surgeon. I know a good one in Chicago, and I do know people who have traveled a thousand miles to see him. Whatever you do, if surgery is it, be sure the doctor has done the surgery at least 40 - 50 times. You may have to travel to find that, considering the rarity of the condition.

Try Rush University Medical School in Chicago for a start. They do all of the training in this specialty, so they can probably refer you to someone closer to you than Chicago.

 

[DammitJanet]

Ya know BW...maybe see if you can get someone local to get her in for a MRI and then get that on a disk. You can then send type up emails and attach the MRI to your emails when you contact doctors around the various states looking for someone to see her.

 

[busywend]

An MRI seems like a good next step anyway - no matter who we see.

I am hoping they do not suggest surgery. I hope it is a matter of changing the way she sleeps and maybe some physical therapy to strengthen muscles? Maybe wishful thinking.

Oh do I have the most major headache.

 

[Lothlorien]

That's a good idea Janet.

You may want to take her to a chiropractor in the meantime. Thoracic outlet syndrome is very painful. Perhaps early intervention with a chiro can help.

 

[DammitJanet]

BW...dont blame you. Its always worse on mommy's hearts when it is our kiddo's than when its ourselves. It broke my heart when I found out Corys hunched over walk was due to back problems and not his stupid jeans!

 

[barbara13]

I have bi-lateral cervical ribs. After a car accident, I had excruciating pain in both shoulders. What should have been a simple whiplash took 14 years and seven specialists to diagnose. I was told by a thoracic outlet specialist that if I did choose surgery I would most likely be in more pain because of the length of time it took to be diagnosed. In the meantime I visited a chat room for this condition and asked which was the best medication for this pain. Four out of ten told me 'neurontin'. I have been taking this since 1999 and can finally function and think properly. I am now 67 and was injured when I was 39. My solution may not work for everyone, but worked for me.

 

[Hound dog]

Wow. Our difficult children are certainly an interesting lot of kids, aren't they??

I would attempt to get as many opinions as possible before making any decision for "treatment", especially as this puts her condition into the even more rare category. Docs will have little information to go on.

I wonder if one of the docs could consult via computer with specialist at the Mayo Clinic or John's Hopkins? Perhaps they have more experience? I suggest this because one of the kidney diseases I have was until I was diagnosed with it at 22 totally unheard of in a patient younger than the elderly. My doctor had no idea of what direction to take treatment as of course it would not be the same as you would do for an elderly patient. He put calls out to every specialist hospital and teaching hospital he could think of in hopes of at least consulting with another doctor who had come across the same thing. He never found one and wound up just doing his best to treat the symptoms as they cropped up.

Might be easier these days to find another doctor in the country who has come across the same thing and found a successful way of treating it with the internet the way it is. Know what I mean??

 

[DDD]

I have nothing intelligent to contribute. Just sending support your way. DDD

 

[trinityroyal]

This is a really old thread. The original posting date was in 2009.