Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
How likely is it to get better information from yet another doctor? Warning: this gets looooong.
Background: I had shoulder surgery this summer. Before I was out of the sling I took an ugly fall on the shoulder, on concrete. Since then it just hasn't been right: it hangs considerably lower than the other, my collarbone is out of alignment, my shoulder blade sticks out, I have compromised range-of-motion is certain directions, other (to me) obvious problems. Two MRIs and an x-ray all show nothing, a CT scan says that, yup, my collarbone ain't where it ought to be but isn't dislocated at the sternum.
My surgeon says all is fine structurally, it's a muscle problem, go back to PT. My PT is adamant that we've done what we can there, and that all muscle groups have adequate strength. The doc's partner says it's partially frozen (other doc says no) and that the pain, not unlike having a screwdriver stuck in it, is from a mild sprain of some ligaments 4 1/2 months later? Maybe not so much, sir. Another PT, with years of experience, came up with another theory, which may explain a little bit, but not all, and concurs with the first that musculature is fine. It reminded me of the old fable about the blind men and the elephant, frankly.
What now?
My PT says to get another opinion, my rheumy says to make a trip to Mayo- not sure I have insurance coverage or $$$ for that one. I trust my surgeon, but he tends to look at the scans on the computer screen and not at the flesh & bone. He talked to his partner for quite a while before the partner came in, the partner didn't talk much to me or touch me to feel where the bones are, and they are, after all, in business together.
Is someone else likely to see anything new? (This orthopedic group and the other one in town are both owned by the same hospital.) Do I look for someone older? More aggressive? Less? Other than in cases where Doc 1 is incompetent (NOT the case here) has anyone gained much from a fourth or tenth opinion? How did you decide where to go?
Background: I had shoulder surgery this summer. Before I was out of the sling I took an ugly fall on the shoulder, on concrete. Since then it just hasn't been right: it hangs considerably lower than the other, my collarbone is out of alignment, my shoulder blade sticks out, I have compromised range-of-motion is certain directions, other (to me) obvious problems. Two MRIs and an x-ray all show nothing, a CT scan says that, yup, my collarbone ain't where it ought to be but isn't dislocated at the sternum.
My surgeon says all is fine structurally, it's a muscle problem, go back to PT. My PT is adamant that we've done what we can there, and that all muscle groups have adequate strength. The doc's partner says it's partially frozen (other doc says no) and that the pain, not unlike having a screwdriver stuck in it, is from a mild sprain of some ligaments 4 1/2 months later? Maybe not so much, sir. Another PT, with years of experience, came up with another theory, which may explain a little bit, but not all, and concurs with the first that musculature is fine. It reminded me of the old fable about the blind men and the elephant, frankly.
What now?
My PT says to get another opinion, my rheumy says to make a trip to Mayo- not sure I have insurance coverage or $$$ for that one. I trust my surgeon, but he tends to look at the scans on the computer screen and not at the flesh & bone. He talked to his partner for quite a while before the partner came in, the partner didn't talk much to me or touch me to feel where the bones are, and they are, after all, in business together.
Is someone else likely to see anything new? (This orthopedic group and the other one in town are both owned by the same hospital.) Do I look for someone older? More aggressive? Less? Other than in cases where Doc 1 is incompetent (NOT the case here) has anyone gained much from a fourth or tenth opinion? How did you decide where to go?
If you are not satisfied, that's all that is needed for your answer. You need to be satisfied not quelled. RASally's idea if looking up docs by ratings would be a grand idea! Go to the next town, next hospital system, not necessarily Mayo or Cleveland. (I get to say this because my Brother In Law is a doc at the Mayo - and there are plenty of excellent colleagues of his in TX, OK, NY, NJ, MD, VA, etc)
did you wear the sling for 3 or 4 months after your shoulder surgey? what day did you fall?
here's a dumb idea, what about a trauma surgeon since you fell relatively post op?
among my friends who have RA and who do not, this shoulder surgery seems to have been the most problematic (like my recovery from my neck surgery was easier) well excepting this shit hand surgery that will not give for me.
but onto you, i am speaking right now to my RA/Lupus/ankolyng buddy who had her shoulder surgery 11 months ago and tells me that it is still not right. she is a go getter and she tends to self blame herself for over usage during heal period but her range of motion is off, 11 months post op. she often feels she screwed up her surgery. maybe you are compensating from being off kilter as you try to modify to get that screwdriver feeling away? you think maybe you are using the WRONG muscles since you really do you have a mis alignment (even though you say you do not have a dislocation).
do you use anti inflammatories?
do you think the healing process is degraded in general with this RA crap?
I just wanted you to know that I am thinking of you. a screwdriver in your shoulder while you are working full time sucks
thoughts and hugs
depot
Sally, that would be a good thread here- how many professionals looked at your X before correctly diagnosing Y. I'm curious as to what shows up when an MRI is done with contrast that wouldn't show without it- do you know which types of abnormalities are made clear with contrast? All of my testing has been without.
Yes, I need to work within the parameters of my insurance coverage. I'm with a local outfit, and very little out-of-state care is covered unless circumstances are dire or you're travelling, in college, etc. My rheumatologist, who feels very strongly that I need to get this figured out, also suggested the state university med school. Their rheumatology department was such a $h!t show I'm reluctant to go back there. They are fabulous for massive trauma, etc., but I'm not sure about this.
I've looked at several rating sites, and the guy who did my surgery consistently comes up as the top orthopedic doc in the state. He specializes in upper extremity, and is the guy the other doctors in town go to when they blow their shoulders and elbows.
Bcatz, my mother worked at Mayo in Rochester in the late '40s, and one of the original Mayo brothers operated on my great (great-great?) grandmother. I do agree with you that there is talent scattered all over, though. The people I know who have done well at Mayo, Cleveland, etc., are the ones with multiple diagnoses and conflicting treatments. They get that sorted out well.
Depot, I fell 5 weeks post-surgery, and was in the sling for 10 weeks total instead of the original estimate of six. I did PT for 4 1/2 months, and did not delay the progression of passive to active-assisted to active because of the fall. All was healing beautifully before the fall, and what he repaired is in good shape. This is a whole new problem in a new area. That may actually be part of the problem: they assume that a fall damages their work, and tend to look there for problems. As to your friend, one dirty little secret is that most folks don't seem to get 100% of range-of-motion back.
When I stand, absolutely relaxed, arms hanging loose, the one shoulder is close to 2" lower than the other at the outside edge, rotated forward, and my arm hangs slightly in front of my body instead of at my side. I'm happy with my strength, all in all, and both the PTs say the problem is not muscular. I tend to agree.
Anti-inflammatories? Good old prednisone.
I believe in the "buddy" system when it comes to doctors. I also believe to many go off the others notes & test results not thinking outside the box.
It took several doctors & just shy of 2 yrs to get the right DX on my neck. Shoulder surgery 11 months before cervical surgery.
Shoulder took a long time to heal, surgeon stated for some up to a year.
Yet problems remained after several attempts at rehabbing it.
Went for a different approach to PT which I actually liked but nothing would get that shoulder to have decent ROM & pain remained.
Come to find out it was both shoulder & cervical. Doctors hyperfocus on one problem.
How many times I was told it was in my head or I was depressed but didn't realize it. Almost gave up but the pain combined with lose of movement along with support & pushing from those who cared had me searching for answers.
Lost count on doctors but ended up with a PM who said at the first appointment it has to be cervical & chose to do his own tests instead of following the others notes & test results. Bingo we had a answer & I had life long damage with 2 surgeries in 11 months.
I learned a lot during that time. Doctors can be lazy.
Surgeons can worry more about their success rate more then the patient.
Most rely far to much on a test result that is suppose to be part of diagnostic testing not all. Like you my problem was visible but if a MRI said it looked like the problem was minor it became gospel.
Took me a long time to get over being angry at all those doctors.,
I did ask around before choosing a PM. knew some people in medical & word of mouth from others. His name came up 4 times. Also ask 2 doctors for a couple names of compassionate doctors. Had it by then with cold uncaring treatment. I realize your going to need an Ortho but this is how I chose to look for my next doctor.
Took a lot to keep going so I do feel for you.
So yes follow your instincts, listen to your body & head for another opinion.
I wish you the very best of luck, Sammy