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By mylove On 2012.10.19 00:07
(Disclaimer - this may turn into a rant. My apologies. I'm frustrated.)

At what point in time do you call your doc and tell them - respectfully - that you think they're full of it?

On Father's Day my husband slipped with a woodworking tool and punctured his hand at the base of the thumb. The digit moved and it did not appear to become infected, so we made a quick trip to the walk in clinic for evaluation and thought it was just going to be one of those routine things. Over the course of the next month, it was clear that it wasn't. The thumb joint got progressively stiffer, more painful, and swollen. He went in to see his PCP, who he's been with for years and adores, who did xrays and bloodwork and found no infection, so he sent him to the orthopedist for a consult.

We went to the orthopedist and he did an MRI and said he couldn't see anything but a lot of swelling around that joint, and maybe some arthritic changes. He prescribed antiinflammatories and sent him to physical therapy.

Two months of physical therapy went by and the therapist there was getting worried because the joint was getting worse - stiffer, still swollen, and less mobile. And the pain began to creep from his hand up the forearm to the elbow.

To make a long story short, over the course of the last four months we've seen the PCP, the orthopedist and the physical therapist repeatedly. He kept going back to the ortho and his PCP saying "This isn't right. Something's still wrong... the pain is getting worse and I'm losing movement in this finger." The pain kept him up at night. Heat didn't work. PT didn't work. Antinflammatories didn't work. Narcotics did not even take the edge off. He was running a consistent low grade fever, even though the bloodwork said there was no infection. They just kept telling him there was nothing wrong... that he just needed to give it time.

Finally we said enough is enough. We got a referral to a hand specialist in a bigger town. Within the first five minutes, the doc heard what the injury was, looked at the films and the notes, and asked him "Is the pain here? Does it start in this joint and go up this path? Does it click when you move it?" All the things we'd been trying to tell both the ortho and his PCP all along. Turns out the tendon was partially sliced, and is catching in the loops, causing a lot of damage, scar tissue and inflammation. He's scheduled for surgery in a week to fix it. Boom. Just like that. And we're vindicated, right?

But wait- there's more. In the meantime, the PCP, getting frustrated with all of our phone calls and visits with no results, decided that my husband was having 'obsessive compulsive health concerns' that had to be based on his Requip dosage. So he called our neuro and told her that we needed to eliminate his Requip. And he shared his opinion in the chart, which prompted the ortho to quit taking our calls.

Now, the neuro took away a third of his dosage of Requip, boom - cold turkey. The end result? He's still having pain, stiffness, swelling and clicking in his hand/arm. We just added dopamine agonist withdrawal to his list of misery.

So the previously vibrant active man is now shuffling, not sleeping, hurting all over continually, shaking, and incredibly frustrated, distraught and angry at life and his inability to function in the activities of daily living. We called the neuro a few weeks after the dose reduction to tell her it wasn't going well, and her solution was to add another half a Sinemet to each dose. That isn't doing a darn thing.

I've had it. Every single night he's at the absolute end of his rope. We're a month into it, and he's through the initial withdrawals and into the 'new reality', and to be honest - it @#$%& sucks. Here's the deal - I live with him AND work with him. We're together nearly 24/7. I know about obsessive behaviors. I'm pretty vigilant about watching for them, knowing the side effects of the dopamine agonists. And I 100% don't believe that his calls and visits to his docs had anything to do with obsessive behaviors. Where does health concern become obsessive? The man has been in severe pain. The effects in his hand are visible and demonstrable. How could they do this?

And worse - now where do we go from here? It's in his chart that in his doctor's opinion he's 'medically obsessive'. So now how do we ever go in again and be taken seriously??

I'm calling the neuro tomorrow and telling her about the surgery and that we discovered that it's a legit, fixable problem. And I'm requesting that she put his meds back the way they were when they were working. We can't do this anymore.

By LOHENGR1N On 2012.10.19 00:53
ML, You've got every right to rant. You know the first thing I thought of while reading your description of the injury was he cut a tendon! The pcp can't figure that out and the reason you've got a Neurologist is because the same pcp isn't qualified to treat Parkinson's as a Neuro can BUT feels qualified to make a call the Neuro or a Specialist in compulsive disorders should make? Esp. with the problem now diagnosed? Rant away, I'm hearing Ya!

On a side note this is why I've typed my finger to fatigue on here about dementia vs. delusional, why I warn not to let the "d" word be put in medical records because once it is all creditability for patient and caregiver concerns are not listened to because they either are demented or listening to demented charges and can't know anything. Same a the position now ML is in because some gp is full of themselves and makes a call in a field they have no expertise in! I'd better stop as I'm on the verge of ranting myself!

All I can say is Hang in there You two and go get'em!

By Freespirit On 2012.10.19 11:43
ML, I just wanted to write a message here to tell you that you have been heard. Loud and clear. What a frustrating situation when doctors stereotype or lump patients into categories without really listening to the individual. My very best to you in getting this sorted out.

By lurkingforacure On 2012.10.19 12:55
Uh, to me this is a no-brainer. First I would let them know you'd been to a REAL doctor who immediately dx'd the problem which they had missed for four months.
That should set the tone well, dont' you think?

Then, given that there really is an injury causing the pain, etc., his prior drug regime needs to be immediately reinstated. If they wont' do that, switch docs, even if you have to go out of town.

Just as you noted that they have all of this in the files and worry it looks bad for your husband, that works both ways. it's also in writing that they missed a clearly diagnosable physical injury....not just once, but several times. You may even want to mention taking legal action or discplinary action (filing a complaint with your state's medical board) because of their incompetence which has caused your husband needless pain and suffering, and you as well. I might do that anyway, once your husband has fully recovered from his successful surgery :) It might keep this from happening to someone else.

By mylove On 2012.10.20 00:22
Done and done. I finally got hold of the RN at our neuro's office and let her know what was going on. She interjected a couple of times during the story and said "That's not right... oh no... that's not good." She agreed that we needed to take him back to the dosage he'd been balanced on, and got it verified by the neuro. We see the neuro again in November, so we'll see what she has to say about the process then.

Thank heavens we had a couple of the larger dosage tabs left. I hope they're enough to get us through till the pharmacy can order his others in (they don't keep them in stock since he's the only one in town on that prescription). At any rate, knowing there's a light at the end of the tunnel gives us some kind of hope.

The only bad part is that the notes, as they say, are still in the file. I think I'll take your advice and pursue that further, because who knows where we could be next time? Now our energy can be put towards regaining the ground we lost and getting through next week's surgery. It's supposed to be a quickie day surgery with minimal recovery time. I'm praying it gets him the relief he needs and he sails through it. It just is horrible that it's taken almost four months of suffering for him to get to where he should have been from the time they didn't know what was going on. Is is really SO HARD for a doc to admit he doesn't have the final answer and refer?

By lurkingforacure On 2012.10.20 10:41
Yep, and I've found even worse, that many docs don't know what they don't know, so they lumber along in ignorance and drag you along with them....until you either enlighten them or change docs.

I can't count the number of times I have thought how grateful I am that we have the internet-can you imagine not being able to quickly look things up and get very up-to-date information about it?

By mylove On 2012.10.20 11:17
And that's what they can't stand about us - that we choose to educate ourselves. But what else can you do? Either you're in there every five minutes asking (what seems to them) dumb questions, or you look it up and triage the really important stuff from the trivial. I can't tell you how many times we DON'T go in - we find out what we need to know here, or via MedLine, etc.

We are forced to be our own best advocates, and to become educated and involved. It's a darn shame when that turns around and bites you in the rear - when that very activity, to be the reporter and monitor of your own condition, is deemed to be hypochondriacal. I feel like saying "Hey, just because YOU think PD is just shaking doesn't mean that's the only symptom I should be having and I should totally disregard the rest of the entire package of 'fun' that goes along with." ...Or that if you think you don't see anything wrong on an x ray that there's truly nothing there, and therefore you choose to discount pain, swelling, and loss of motion, and alienate the patient behind those symptoms by telling him in essence that you don't believe him.

By Arly56 On 2012.10.20 16:18
Would you ask the surgeon/hand specialist to send a letter to the neuro and PCP? It may hit them over the head differently coming from another medical professional.

I hope the surgery goes well and that the meds come in soon!

By carman96 On 2012.10.22 10:28
I'm sorry you both had to go through all that.
I was finally fed up with the neurologist my husband has been going to since diagnosis in 2004. He said he thought my hubby had MDS. It made me do some research and decided to ask our PCP to refer him to the neurological department at the University of California Davis. It took about 6 weeks and we have to drive 2 hours to Sacramento but we absolutely love his new neuro! She is young and very attentive. Being a teaching hospital she is also a professor and must be up on all the latest research. She spent almost 2 hours with us. She doesn't agree with the MDS dx. Thank God.
Bottom line is I'm so glad I finally had the courage to change doctors. It is worth driving farther to me to get my hubby the best care I can. I have a hard time with change but it is extremely important to have a Dr that really listens and wants to help.
My hubby also has dementia but the drs have an obligation to listen to them!!

By mylove On 2012.10.28 01:21
A quick update:

Surgery yesterday went really well. He was in and out in about an hour. Here's the last chapter of the story. The doc came out to get me when it was over. He said it went really well, but that it was a good thing we'd come in and had it done. It turns out that not only did he nick the tendon, like we thought, he nearly severed it. It was at least halfway cut through, and the loose ends had flapped back and after all this time had made scar tissue and adhesions that were causing the pain and immobility because the tendon could no longer pass through the sheath. The long and the short of it is that rather than three weeks recuperation time like we expected, it will be more like six and he will have to be very careful not to stress it or it may snap! The doc said after he cleaned up the scar tissue the body will regenerate the tendon and fill it in but we just have to be careful with it.

Part of me wonders how much of it getting that bad was waiting so long goign back and forth and back and forth to doctors who wouldn't listen to us. It certainly is why physical therapy didn't work. Can you imagine if it had snapped during PT?

For now, we are trying to recuperate and adjust to his new dis-ability. I'm getting to be really skilled at washing three hands together instead of two! It makes us giggle. Thank heavens it was the non-dominant hand, so he can do most other things. He's at least out of pain for the most part, so his spirits are much better.

I'm going to tackle what we do with his primary doc and the neuro when we feel up to it. I do want to get a copy of the surgery report in both his files with a note that says he was complaining about a legitimate injury all this time. Every time I think about it I get mad, so I have to limit the time I spend stewing on the subject. Anyway - the takeaway lesson once again is that YOU KNOW YOUR FAMILY MEMBER BETTER THAN THE MEDICAL STAFF. You may not know their medical condition better (though it's a safe bet that most of us do!) but for certain you know what's normal for your loved one and what is not. Don't just take their word for things blindly - if it feels wrong, it's possible that it just could be.

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