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...
I need to get this off my chest, so here comes a major rant.
I've been whining around here about my shoulder problems for months. Tore a tendon last spring, had surgery over the summer, took a horrid fall straight on it onto concrete in September. Since the fall, it hasn't been right. I've had x-rays, 2 MRIs, and a CT scan. None have really looked at the problem area, but they keep telling me that the repairs to my rotator cuff held up well.
I know this- the repair job was skillfully done and has healed well. However. There's always a however. Since falling, the injured shoulder hangs between 2 and 3 inches lower than the other and is rotated forward- kind of a nice orangutan effect. My collarbone is out of place at both ends, slightly at the sternum and pretty caved-in on the other end, and my shoulder blade sticks out in back, 24/7. Range-of-motion is pathetic in one type of movement. Plenty of pain, especially if I try to get fancy and do anything like walk, breathe, or find a position to sleep in.
The surgeon, who I like, respect, and have seen for a few years, says it's fine. He does have a nasty habit of looking at the computer screen instead of the patient. My rheumy, PCP, and physical therapist have all urged me to get another opinion, as have friends, family, and even a couple of more-or-less strangers!. The surgeon's partner looked at it briefly and pronounced it "fine." A retired ortho here in town who still consults said that if the surgeon says it's fine, it's fine. It's reaaly not fine.
About a month ago I saw another doctor who practices in a different town and is unaffiliated with the first. Not sure what to make of him yet. He sent me to physical therapy and ordered yet another MRI, this time specifically of the AC joint. This is progress, as the AC joint is pretty obviously messed up. I tried a new physical therapist, and like him. He examined everything very carefully, more so than any MD has by a long shot. He says that the AC joint is highly unstable, that the entire scapula is rotated forward, and that my collarbone Is out of place. Sounds right to me. I'm completely convinced that the far end of the clavicle isn't connected to anything else anymore. After a couple of visits he told me to not waste any more time on PT until the problem is diagnosed and, he implied, fixed.
After weeks of waiting for insurance approval, etc., I had the MRI on Monday. While filling out papers, the woman at the front desk called me over, and told me to make sure the tech knew we were looking at the AC joint. The tech was fabulous. She looked at my body, agreed that things were not where they should be, and took a lot of notes for the radiologist. She got me positioned to show as much as possible, and ran extra scans. She thought it was outrageous that this was my third MRI with no answers, and said that we'd get them this time. Hooray. I need a break here.
Wednesday I went by to pick up the report and a CD of images to take to my appointment this coming week. The report was short and to the point: that is one fine-looking rotator cuff repair.
Is this jackass "reading" MRIs from a bar stool in the Caribbean, getting them done before the pesky patient even walks in the clinic? Can he not read? Does he not give a rat's ass? Does he refuse to say anything bad about a shoulder the first surgeon worked on? Does he hate me? Am I crazy, and having one shoulder three inches lower than the other is the new thing?
I'm so upset and disappointed I can barely function. I'm hoping that the new ortho is adept at reading MRIs, and will be able to get some answers from the images. He sure ain't getting any from this sorry excuse for a radiologist.
I've been whining around here about my shoulder problems for months. Tore a tendon last spring, had surgery over the summer, took a horrid fall straight on it onto concrete in September. Since the fall, it hasn't been right. I've had x-rays, 2 MRIs, and a CT scan. None have really looked at the problem area, but they keep telling me that the repairs to my rotator cuff held up well.
I know this- the repair job was skillfully done and has healed well. However. There's always a however. Since falling, the injured shoulder hangs between 2 and 3 inches lower than the other and is rotated forward- kind of a nice orangutan effect. My collarbone is out of place at both ends, slightly at the sternum and pretty caved-in on the other end, and my shoulder blade sticks out in back, 24/7. Range-of-motion is pathetic in one type of movement. Plenty of pain, especially if I try to get fancy and do anything like walk, breathe, or find a position to sleep in.
The surgeon, who I like, respect, and have seen for a few years, says it's fine. He does have a nasty habit of looking at the computer screen instead of the patient. My rheumy, PCP, and physical therapist have all urged me to get another opinion, as have friends, family, and even a couple of more-or-less strangers!. The surgeon's partner looked at it briefly and pronounced it "fine." A retired ortho here in town who still consults said that if the surgeon says it's fine, it's fine. It's reaaly not fine.
About a month ago I saw another doctor who practices in a different town and is unaffiliated with the first. Not sure what to make of him yet. He sent me to physical therapy and ordered yet another MRI, this time specifically of the AC joint. This is progress, as the AC joint is pretty obviously messed up. I tried a new physical therapist, and like him. He examined everything very carefully, more so than any MD has by a long shot. He says that the AC joint is highly unstable, that the entire scapula is rotated forward, and that my collarbone Is out of place. Sounds right to me. I'm completely convinced that the far end of the clavicle isn't connected to anything else anymore. After a couple of visits he told me to not waste any more time on PT until the problem is diagnosed and, he implied, fixed.
After weeks of waiting for insurance approval, etc., I had the MRI on Monday. While filling out papers, the woman at the front desk called me over, and told me to make sure the tech knew we were looking at the AC joint. The tech was fabulous. She looked at my body, agreed that things were not where they should be, and took a lot of notes for the radiologist. She got me positioned to show as much as possible, and ran extra scans. She thought it was outrageous that this was my third MRI with no answers, and said that we'd get them this time. Hooray. I need a break here.
Wednesday I went by to pick up the report and a CD of images to take to my appointment this coming week. The report was short and to the point: that is one fine-looking rotator cuff repair.
Is this jackass "reading" MRIs from a bar stool in the Caribbean, getting them done before the pesky patient even walks in the clinic? Can he not read? Does he not give a rat's ass? Does he refuse to say anything bad about a shoulder the first surgeon worked on? Does he hate me? Am I crazy, and having one shoulder three inches lower than the other is the new thing?
I'm so upset and disappointed I can barely function. I'm hoping that the new ortho is adept at reading MRIs, and will be able to get some answers from the images. He sure ain't getting any from this sorry excuse for a radiologist.
i am curious also, if he reviewed the MRI with you - my docs tend to pull them up with me. i wonder if this doc did?
there was a co worker i had at work who went through this with her ankle. an entire ortho team in one city passed her around. then through some miracle she ended up very far from where she started at a trauma clinic and the recovery began (surgery to correct). this is what I want for you. i just do not know how to connect the dotted line.
Depot
He did look at the films, at least briefly. Said that things looked to be lined up OK. Unfortunately, they go into a more normal position when I lie flat, like in, ummm, a MRI or CT scanner. I can't see that anyone actually examined the ligaments, muscle attachments, etc. (A couple of people have voiced suspicion that I may have stripped the muscles off the clavicle. Might explain the muscle atrophy in my back . . .
He probably didn't appreciate my telling him what I thought of the radiologist. I know, this is all my fault, and I'm a horrible person. Probably crazy, too. And OLD. Don't forget old, and weak. Nasty, disagreeable, and hard to get along with, too. After all, I told him he was not going to inject it with cortisone last time, AND I said no to the acupuncture today.
Just so happens, I have an appointment with my rheumy on Monday. She's young, brilliant, has my back, and has an inflammatory arthritis herself. I'll see what she has to say.
I'm thinking I might go use the PT visits I had approved partly just so I can say I did. It's always the second suggestion, cortisone being the first. Also, this PT seems smart and cautious, as was my first, but maybe with a different slant on things than the first one had.
Depot, you're right that I just need to get with the right person. I have the feeling that this is something atypical, although maybe not if they'd just connect the dots. The guy today looked flummoxed when I asked if something was related to falling. No apparent memory of that.
No physiatrists that I know of.
As for tonight, the partial bottle of Two-Buck-Chuck left over from the pasta with white wine sauce is calling my name. Methotrexate be damned, it's time for a drink.
I've mentioned this in the past but a very wise PT brought to my attention these tests, such as MRIs doctors rely so much on are done while the body is perfectly still. What is going on while the body is in motion? Perhaps this in part is why some surgeons find more then anticipated during the actual surgery.
I'm a little confused as to why the doctor does not understand the PTs comments on "significant instability" & "severe protrusion". Pretty cut & clear comments.
PTs work hands on with how many patients? I'm sure they know what's normal & what's not. In fact I've had 2 good PTs DX my problem when tests did not indicate the full picture or severity.
Perhaps I misunderstood but as far as I know there should be marked improvement with PT without causing additional problems or pain.
If it's causing added stress or no marked improvement it's sent back for the doctor to reevaluate.
Now Sally brought up a good point. Considering your problem a Physiatrist may be worth looking into.
At least you may get validation there is a problem that needs to be addressed.
Since musculoskeletal is their area of expertise. Food for thought if this viscous circle continues.
I'm always for bringing the second set of eyes & ears to important appointments.
Your injury appears to be so evident. Just going off the PTs comments should set off a red flag to the doctor.
They appear to be so hyper focused on the success of surgical recovery they are closed minded about a new injury that has developed. So perhaps new doctor, another speciality may get you some where.
Had a surgeon focused on his success rate. Actually told me not to mess up his awesome work. Something like your going through. Problems occurred 3 months post op & could not this surgeon to acknowledge it. To the point it was all in my head.
No matter the severity & pain it was not his problem.
So I do feel for you.
Very difficult & frustrating when it's evident something's wrong & the very people we rely on to help blow it off leaving you to fight for answers & help.
Going off what this PT has stated it can't be ignored forever here. It's finding that doctor that will get answers you so need.
Use the buddy system if possible for future visits. Harder to ignore 2 people. Especially if that person can verify how this transpired.
Good luck with your doctor, really hope you get some where.
Sammy
You are dead on about lying motionless, and flat. Also, no comparison between right and left, damaged and undamaged.
I get the feeling that MDs don't have much respect for PTs. As I said earlier, I haven't seen any evidence for years that a doctor has actually read the reports the PTs send. They are sure in a hurry to send you there, though. I have felt that the PTs and OTs I've used have been good people, knowledgeable, and skilled. You spend quite a bit of time with them, and develop a relationship. Much more so than with a MD. Because of the time and the relationship, as well as the hands-on nature of their work, I tend to trust and believe a PT over a doc.
I have not always had good results from physical therapy. For me it seems to work well for rehab after something has been fixed, but is just irritating to other problems.
Several have spoken well of physiatrists. What is their natural habitiat? Do you generally need a referral? I can't find any in my area, although there seem to be a few, associated with hospitals or pain management clinics, in the big city down the road.
I like the description noted on one site:
"The role is to restore physical function as relates to each individual"
Also states often in this speciality doctors may notice things overlooked by others as many focus on the entire body.
It can state they are primarily used as part or head of rehabilitation team but do not get hung up on that. As that is not always or entirely the case. It wasn't my experience while looking for the cause of my problem. They can wear a few different hats.
Patients tend to be referred for EMGs in this speciality. As they deal with muscle or musculoskeletal, nerve & bone & even spinal.
I believe some may deal with a certain type of pain management also.
Also patients dealing with limitations with movement. Which was my problem & is part of yours now.
Even though they can be referred to as non surgical medicine they seem to treat for various reasons.
I don't think this speciality is widely known compared to others.
I had injections, testing, therapy before a very frustrated Physiatrist sent me to an ortho surgeon to evaluate my shoulder. Knowing it was at least part of the problem but unable to be 100% sure.
I'm thinking & the key words in your case is "musculoskeletal". Not to mention it's a fresh set of eyes & ears that can work closely with a PT or in your case hopefully acknowledge the PTs observations. By palpating PTs really get to know what's normal & what's not. After all it's what they do, working hands on.
Since they can be considered part of rehabilitation I don't see why you would have any real difficulty getting into one. As your doctor appears to think PT or Rehab is still needed.
Like any other doctor it's keeping your fingers crossed you get a good one. It may be the one doctor who can & hopefully would acknowledge your injury without relating it to your surgery & recovery.
Heck it's worth considering. If your other doctors cannot get anywhere referring you to a Physiatrist can't hurt. After all you need this problem addressed.
Thanks to doctors not looking outside the box I lost ROM in my shoulder. PT was simply to painful & could not get the ROM out of that shoulder. Unknowing at the time the spine was preventing this. As the MRIs were not revealing the severity of the problem. Which my PT felt as rare as it may be it simply was not showing the real picture. That is where the subject of lying perfectly still in a prone position may very well hinder a diagnosis in its entirety.
Doctors put a lot of faith in what should be "part" of diagnostic testing. They also hyperfocus on one thing not considering there could be more then one. Or in a case like yours getting the right doctor to look at your injury with fresh perspective. Moving on so to speak from that surgery with an open mind. Surgeons can get hung up on the success of their surgery. Some it's about their success rates.
Your situation add proof to that. You had an accident that opened the door for the possibility of another injury. It's not difficult to comprehend but you seem to be stuck with a group of blindsided people not willing to move beyond the surgery.
It's extremely unjust to think you should just accept their word when you are dealing with the pain & limitations. That is not what should be considered success & should prompt a doctor to want to explore the cause. "Should"being the key word.
In summary your dealing with
I-irresponsible
D-Doctors
I-Ignoring
O-obvious
T-transparent/telling
S-Symptoms
Leading cause of:
D-Doctor
I-Induced
D-Depression
I do feel extremely bad for you. Very unfair & beyond frustrating. You have enough pain & problems to deal with.
Ok enough said.
Hope this answers your question.
My insomnia is turning me into a smart a**. Time for bed.
Hugs,
Sammy
Every now & then the brain clears enough to allow me to get the words out.
I gotta tell you I'm thinking there are plenty of people here who'd love to accompany you on the next appointment for that shoulder.
Me included. Not sure we'd be welcome back but believe me they would get the point.
Every now & then a situation comes along that stuns me. Even though I've walked a very similar path. The fact it's right in front of their eyes & yet they refuse to acknowledge it for whatever reason.
Seems irresponsible or unethical, something, it's simply wrong.
The added stress & aggravation on top of existing pain & worry. It's uncalled for.
You'll get someone's attention unfortunately it looks like your not going to be able to rely on those you should be able to trust.
Mean time we are here for you.
Sammy
Have you been able to find anything useful about your situation on the internet?
I had the same thing happen with a PT. as with you the doctor visits started over again looking for the actual DX.
It's exhausting.
Are you wearing a sling at all? I know it's frowned upon after recovery with concerns of frozen shoulder & such. Yet a sling eased some of the pain so I'd wear it only when I was up & moving enough.
Not sure if it would help with yours but thought I'd throw it out there.
At least you have a name.
Sure can't blame you for needing a break.
Perhaps putting a call in to see how long of a wait this doctor may have.
I'm so sorry you have to go through this.
Sammy