When is surgery necessary?

[dazedmom]

My 15 year old daughter has suddenly developed a rather severe bunion on her left foot, big toe.   The rheumatalogist wants her to try sulfasalazine, because some tests and symptoms indicate jra, even though nothing is exactly conclusive.  I know the podiatrist has been planning to operate on the toe, breaking bone and inserting screw into joint to stabilize. Yet, at one point, podiatrist also talked about getting inflammation down to point where daughter can wear shoe and bear weight again.   I'm confused!

Is it appropriate to stall surgery for several months to give sulfasalazine time to work... or... not?  I guess I'm not quite sure what the medicine is supposed to do. Does it "fix" some joints, or just relieve pain?  Is there a point beyond which joints aren't "fixable" by medication, and how do you know when you've reached it?

dazedmom

[Dnmh]

Don't Give Up! I just finally got a diagnosis after battling my health problem for 12 years. You just have to push. We're here when you need us!

[dazedmom]

You aren't discouraging... the situation is!  I just appreciate having someplace/somebody to go to when I'm lost.

I'll keep you posted as things develop.

Thanks--
dazedmom

[txsilver]

You are doing fine!  Sorry if I discouraged you in any way.  Please ask the rheumy what makes the dx less than conclusive and what would finalize it in his/her mind.  You also might ask about a bone and joint scan.  That is an MRI with contrast.  It can show inflammation in joints that may not show up in other tests.  Keep us posted and will try to help.

[dazedmom]

You were right about dx not being conclusive... or at least that's what dr said.  I'm just not sure what he's waiting for.

Perhaps it IS MRI results. She did have one on left fbunion, but it didn't show arthritis particularly.  It also didn't show trauma, which is why rheumy is keeping an open mind, I guess.

Thanks for listening.  I'll try to get better info as this progresses.

dazedmom

[txsilver]

I keyed in on a sentence in your first post that indicated the dx was not conclusive.  If the R is confident of the dx, then that counts for a good bit.  The RA factor may never be positive, some of us test negative for that and still have RA.  Did the x-rays show signs of arthritis?  Did she have an MRI or a bone and joint scan?  
If you hace reservations about the diagnosis or the treatment, a second opinion may be in order.  If you have confidence in and are comfortable with your rheumy (and pod), then getting the docs to talk and agree on an approach should help.
Please keep us posted and we will try to help you and provide morale support.

[dazedmom]

Yes, she's using splints, but so far they don't seem to be helping much... except perhaps keeping her big toe from crossing over even further.  She's still in a lot of pain and uses crutches to travel any distance.

I do believe the podiatrist and rheumatalogist are talking to each other, but that's something I'll double check.  We saw R last week, but will see P this week.  

Exactly how does one get a definitive diagnosis of RA, if one is just 15?  She's got HLA-B27, and positive ANA, and toes (not same toes) on both feet are swollen.  Dr says she doesn't have to have a positive RA factor at her age for dx...    so what else does she need?    

dazedmom

[txsilver]

This is a big decision.  Has the podiatrist tried using splints on her bunion?  Are your rheumatologist and podiatrist talking to each other?  I think that would be my first step, to get them talking and to agree on a treatment plan.  
My humble, non-medical opinion is that if surgery can be avoided by allowing time for another treatment to work AND if your daughter is not in too much pain, it is worth considering but I also recommend you research sulfasalazine treatment.   All medications have possible side effects that should be weighed against the ways in which RA impacts your daughter's life.  If it were my daughter, I would want a definitive diagnosis of RA before I agreed to the sulfasalazine treatment.