The blind leading the blind...

[Natalie M.]

I am absolutely sick of this!!! We took Logan and got a third opinion at St. Louis Children's last Friday from Dr. Goldfarb. He surprised me at how young he was, he has only been out of residency for 2 years. I had a local Dr. look at her x-rays and he said there was nothing we could do for her dislocation. Dr. Nath said the same thing BUT he didn't see her x-rays. Dr. Nath said there was nothing you could do for a dislocation and he spoke as if she had a posterior or anterior dislocation. Dr. Goldfarb said she has an INFERIOR dislocation, the head of her humerus is about 1 1/2 inch below her shoulder socket. He said that she needs surgery and that he may pin it. He said that you can't leave it like that, that in the long run she would lose more function (she has lost some). He said it was not a capsulodesis surgery but similar. Any opinions???? HELP!!!!!!!
Thanks, Natalie

[admin]

It gets so darn confusing doesn't it? I am so glad that you continued gathering information and opinions, as frustrating as it may be. It is the only way to educate ourselves so that we may be the best advocates for our children. After seeing multiple specialists I could share my stories as well.

I am not familiar with the inferior dislocation but it seems to make sense. I too am confused, especially about Nath saying he couldn't do anything. Why? He does surgery for dislocation all the time. Can you get any additional information from him to help understand more?

Talk to others and get more medical opinions before doing anything, if you can or are interested. These decisions are very big. Best wishes to you.

[Julie-work]

Natalie,

I'm sorry for your frustration. I know exactly what you are going through because we are at the same place for my daughter. She recently had a 3D CT scan taken of her shoulders. The affected side was sooo different from the other side. TCH is recommending the acromioplasty/caps surgery, but I still haven't been able to find out from Dr. Nath if that will address the gap between the humeral head and the shoulder joint. Is Logan able to lift her arm up very high without pain? I remember asking a while ago about inferior dislocations and Claudia answered me because that is what her daughter has. Based on what she told me, I didn't believe my daughter had an inferior dislocation, but she does have the space like Logan has. Hum??? We are seeking other opinions also, but I'm afraid we will be in the same boat as you are now. It is so hard to make a decision when none of the doctors' opinions agree.

[Natalie M.]

Julie- so you don't know if your child is INFERIOR or not? HMMMM, curious to know if it's any different. I just can't figure out how they would stick a flat headed humerus into a flat jointed shoulder. What do they do during the acromioplasty?? Logan has absolutely no pain, never has, I just felt a huge bulge in her armpit one day.

[Julie-work]

Natalie,

I have never been told that my daughter has an inferior but is sounds the same as Logan's per the x-ray. We were told that she was subluxated after her 8/02 x-ray. During the acromioplasty/caps the cut the end of the acromion (and clavicle if needed) to allow the humerus to stay in the joint and then they also suture into the tissue at the back of the shoulder to tighten the shoulder. My daughter had the caps done in 4/03, but know they are saying that the bone(s) are overgrown. I'm still waiting to get an answer from Dr. Nath if the surgery would help the gap issue though. My daughter isn't in pain now but she is losing movement. I'm worried about future problems though.

[admin]

Julie,

I would be interested in hearing what Dr. Nath has to say about this particular surgery addressing the space/gap. I am thinking that it will if the humeral head goes back into the proper position.

A lot, if not most of our children have a gap and space between the top of the humeral head and the glenoid. I have never been told this is due to dislocation. Hmmmm....I wonder when it becomes considered an inferior dislocation. We have been told posteriorly dislocated, subluxed, etc., but no one has said anything about that space being related to something like that.

[claudia]

Natalie:

Juliana has an inferior dislocation as well. She has been like this for at least 2 years. We are not doing anything about it.

We spoke at length with Dr. Nath about the inferior dislocation and why they couldn't fix it. He showed me a mock-up of the shoulder. From that mock-up I decided I didn't want him to do anything either! Your armpit (which is where Logan's humeral head is probably located) is just chock full of nerves, arteries, veins...all kinds of really important stuff that I personally didn't want anyone to mess with. Even it if was Nath or Shenaq, two docs in whom I have the utmost confidence.
As for function, we find that it comes and goes. Sometimes her arm gets locked up, sometimes she can't move it up very much. She complains sometimes that it hurts and that it pops and clicks (which it does all the time). Overall, she lives with it and it just is.

Am I disappointed that nothing can be done? Rather.

But I am glad that Nath and Shenaq took the time to explain why they didn't want to touch her. We would have been better off with a posterior dislocation. But that is not what she has. She does have some acromial and clavicular overgrowth, but not as much as you would think considering the initial severity of her injury. This is one place where I am waiting and seeing...

Understand that there is no capsule under the shoulder. The capsule goes infront of, on top of, and behind the shoulder. So there really isn't a way to deal with this. Ultimately, if it gets too much in the way, they can shorten the deltoids, but I wouldn't want to do that when Juliana was young. I will wait on that until she is older. The problem really is that the deltoids are weak and not holding the bone in place.

By the way, and inferior dislocation is not nearly as common as the posterior or anterior type.

good luck,
claudia

[PeggyUBPN]

Natalie,
sorry...hadn't read this one before I asked how Logan was!
Wow; a lot to take in. I hope you find some answers! Maybe seek yet another opinion??

Not being sarcastic, really. I wish you all the best!

Peggy

[Natalie M.]

I seriously hate to seek another opinion, that would almost confuse us more, (so two say no, two say yes???). I would feel like we were back at square one.
Claudia, if you wouldn't mind, I would love to talk with on the phone about the similarities, your post is really how my husband and I feel. My email at work is natalie.miller@coxhealth.com, email me and I will give you my home number or if you want me to, I will call you, if you don't mind- I am desperate!!!

[PeggyUBPN]

I can understand that; please share with us what you do come to find/do, so that others can benefit from your experiences.

Peggy