Need some advice, medical related...

In My Humble Opinion
1

First off, I am not looking for medical advice. I, or rather, my father, will get that from his doctors. Rather, I’m looking for advise as to what to do next in this situation.

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Ten or fifteen years ago, my father fell off some scaffolding and sprained his ankle pretty badly. He went to the doctor, was on crutches for a while. This accident may or may not have bearing as to what he’s experiencing now - I simply include it as background.

Fast forward to now. He’s been experiencing ankle pain for some years now. Sometimes it hurts so badly that he won’t walk, or avoids walking far. Sometimes it’s fine. He finally went to the doctor for it, and at first glance, the doctor said there was probably a bone chip in his ankle that would need to be removed surgically. Just to make sure, they did an MRI.

He got the results of the MRI yesterday. Instead of having only a bone chip, it’s much worse. I don’t know the medical terms, but the jist of things are that a bone or group of bones in his ankle have somehow been cut off from the blood supply and have died. Unless fixed, the pain will get worse and worse, and my father will eventually be unable to walk.

The fix involves pulling some bone from my father’s hip or some other part of his body, and using it to fuse his ankle together. He will no longer be able to move his ankle after the surgery. Supposedly, he will be able to walk, albeit with a limp. He’ll also be able to do most activities he enjoys, such as riding his four-wheeler, driving, etc. Still, a fused ankle isn’t really a great thing to have. We’re all rather upset about this situation.

My parents tend to want to believe the doctor that this is the only solution, and in reality, it may be. However, I do want to research it and see if there’s any alternatives. Maybe I lived in Boulder for too long, but it seems to me like there must be at least one or two other option to fusing his ankle together. So my question - how do I go about finding them? I know nothing about medicine, doctors, or surgery.

Also, I’d like him to get a second opinion. Although we’re in a small town, it’s a small town with a giant medical facility. There are a ton of doctors here. How do I find another one for him to see? Does the new doctor have access to his records, the MRI report, etc, or will my father have to go through all that over again? Will insurance pay for a second opinion?

Help!

2

You’d have to check your father’s insurance policy to see if a second opinion would be covered. My guess if that it probably won’t.

However, if you’re concerned that the diagnosis could be wrong, bite the bullet and pay to get a second opinion anyway.

As for whether there are alternatives, discuss this with the doctor you have. Tell him that you feel fusing the ankle is a last resort and you’d like to know whether there are alternatives you can consider first.

To find another doc, check your local phone book.

3

I think it would be worthwhile to get a second opinion if you can manage it. Of course, it might be hard to get into an orthopedist without a referral (I am not sure how these things work) but you must try.

Here’s why I say that. Sorry that this is such a long story, but it made one hell of an impression on me.

My friend’s baby daughter was having frequent spells of retraction and stridor–that is, difficulty breathing. She went to her own doctor and an ENT and was becoming a regular at their local emergency room and the emergency room at a larger hospital in Toledo. Finally they were sent to the hospital in my town, which is larger and widely recognized as a great medical facility. There they got a diagnosis, which was that the baby had a hemangioma in her throat. That’s like a strawberry birthmark inside the body. It was restricting her airway so that if she got a cold or cried a lot and got it inflamed, she could hardly breathe.

The doctors at this hospital said they recommended a tracheostomy. She would have to have it for several years but would eventually be able to get rid of it. In the meantime, however, it’s a serious thing. The parents and any caregiver would have to be trained in emergency treatment should it become clogged or dislodged. Most familes have to hire a night nurse. No daycare takes kids with this. She could never swim. She wouldn’t learn to talk normally. On and on–the postsurgical complication rate was daunting in itself. But this was their best treatment, what they’d done for 10 kids in the last nine years who presented with this.

My friend was upset (understandably) but wanted to learn all she could. She started to do internet searches on the condition to learn more. And there she learned that there was a new treatment for this condition where doctors laser off the growth. And a doctor at a Detroit hospital (not 40 miles away) had been the pioneer, doing tests with different sorts of lasers and frequencies and having great success. My friend decided it would be folly not to get an opinion from this doctor as well. They had to get disharged (against medical advice) and somehow wrangle an appointment with him. It wasn’t easy–they luckily found out that their family doctor had done his residency at that hospital and could pull some strings. Their baby ended up a perfect candidate. She’s had the surgery and is now normal and a beautiful happy 8-month old. And WITHOUT a hole in her throat that needs constant suctioning and continual medical care.

The reason why this blew me away is that in my friends’ shoes, I wouldn’t have questioned. I’d have been relieved to have an answer after umpteen visits, and I would have implicitly trusted the opinions of these doctors at one of the finest teaching hospitals in the country. Hell, my son was born there and stayed for a week in that NICU! But you know, not every doctor knows every treatment. Even good doctors can’t be up on everything, on every pioneering treatment.

So yes, I think it’s worth asking someone else. Even if you like your doctor.

4

I’m not sure if this would work in your case, but it is definately worth a try. Go to a nuromuscular therapist (and no, I’m not sure of the spelling). They are able to manipulate and move stuff around to make it better. I almost had to get surgery, and then my mother heard about this guy…I went to him and he made everything better. No surgery was needed, and I’m almost as good as new. Give this a try. Just a warning, it will hurt like hell when he’s doing it, and also for a day or two after, but should fix the problem.

5

Definitely get a second opinion. Or a third. Do what it takes. Everyone is right, your insurance may not pay for it, but then again it might. A patient has complete access to all of their medical records. With that said, instead of having other doctors that he may consult request his medical records, why not check them out and hold onto them himself? But, these records are not replaceable, so you have to be responsible. With MRI’s, it is nothing to get them to print a duplicate copy, with plain xrays, some facilities charge for the films. IIRC it is like 12 or so a film. However, if they have been read (most facilities do this within 24 hours) a person can check them out to whomever they wish. This way your dad can just bring them along to each doctor’s visit.

6

What Lyra said. Also, definitely get a second opinion, and if you’re not happy with that, a third. Even having to spend a couple hundred bucks out of pocket is waaaaaay better than the alternative; surgery and therapy cost money too, as does missed time from work, as do drugs, and none of this takes into account the incredible amount of post-surgical pain, or the fact that a joint is never quite the same once it’s been opened up in surgery. Ankle fusion is some seriously hardcore stuff.

No reputable doctor would deny your father a referral to a specialist in a case like this. Ask other health professionals who the best guy in the area is, and if you need to wait a few weeks to get in, it’ll be well worth it. As for insurance: believe me, they’re happy to pay a couple hundred bucks if they think it might save them from having to pay thousands in surgery and therapy.

If you can wade through the medical terminology, look up some journal articles on ankle fusions, alternatives, and possible complications; they’ll give you ideas of what questions to ask. Ask other allied health professionals, like physical therapists, who the best doctor is and if they’ve seen better success in their experience with other alternatives.

If your dad goes to a specialist, it should preferably be an orthopedic surgeon who specializes in foot and ankle problems. Tell your dad to ask about ankle replacement; it’s currently experimental, but can be a viable alternative for some people. I’m keeping a close eye on developments in that area myself, as I’m 33 now, but will likely be a candidate for one down the road.

Good luck, and don’t rush into any decisions. I did, and was sorry for it later.

Eva Luna, who is not a doctor, but has had 3 orthopedic surgeons and 4 rounds of ankle and leg surgery, including a plate, screws, external fixator, two Achilles tendon lengthenings, some really fun drugs, bone spurs, scar tissue, and countless hours of physical therapy (i.e. I write from way too much experience). If only I’d known then what I know now…

7

Oh, and I almost forgot; you’d be amazed what you can find online for free in terms of medical literature. For starters, try the American Academy of Orthopedic Surgeons at www.aaos.org.

8

Athena,

I forget the name of the medical clinic up in Vail but they do a lot of “bone” work (for lack of the medical term) up there for Olmypic athletes. In addition, we should have some great ortho (that’s it right) down here in C Springs that also focus on Olympic athletes.

To the best of my knowledge all will accept non-athletes but I have heard that the clinic in Vail is the best around.

Not sure if that helps but it’s worth a look-see.

9

Wow, thanks for all the advice!

techchick68, I’m no longer in Colorado - I’m in Michigan. Luckily, my father and I both live in what’s become the medical hub for about a 200 mile circle - the hospital here is bigger and more modern than any of the hospitals I’ve seen in the Boulder area. Also, there’s an Olympic Training Center here, so there’s definitely some good athlete type doctors.

Cranky, I sent your story on to my mother to try to persuade her that getting a second opinion is worthwhile. I hope it works!

monica I’ll check out the neuromuscular therapist idea, definitely.

Eva: He’s seeing an orthopedic surgeon who has a very good reputation in the area. However, I’m sure he’s not the only one. I’ll check on others, and also that web site you mentioned. Ankle replacement sounds promising; I’ll do some research on that.

Everybody else - thanks so much for the advice. I hope we find some alternatives!