Scintigraphy - useful for pain related to prosthesis / muscle / tendons?

[David]

Hi there,

After 16 years with my femur and partial hip prosthesis I sometimes have "stabbing" pain at specific points. I typically treat these as being related to the muscle attachments ie tendons. I can put my finger right on the sore spot. This was previously triggered by overuse and fatigue, but now tends to happen while I walk, ie unrelated to any particular form of abuse!

I have finally decided to complain and have asked an orthopedic surgeon I saw for a 5-yearly checkup last year for help. His advice was to have a scintigraphy. This to me seems to be more targeted at the actual bones / prosthesis, something the surgeon wants to investigate to see if things are loose!

I'm wondering whether this will help on the muscular / tendon point of view? I'll have the test tomorrow so I guess I'll find out soon enough.

On the negative front, the surgeon adopted the standard "don't do anything and protect the prosthesis" speech when I said I wanted help from sports physiotherapists to see if I could strengthen my leg muscles. What a bummer, I couldn't believe it, I was hearing the exact same speech almost word for word that my surgeon told me 16 years ago....forget about your physical ability and focus on your mind, protect your prosthesis at all cost (I ignored his advice  ).

I guess I'll have to go it alone as usual and try and contact a sports physio university department to see if anyone would be interested in working with me on a training program, I think progress can be made. Meantime I have started finning in the pool, always useful for scuba-diving, can only help. I was shocked to notice the difference in strength of my 2 legs.

My ultimate dream is to avoid the pain I feel, avoid any repeat tendinitis I had after playing too much tennis, and hopefully play tennis again, who knows. Otherwise cycling sounds good too.

I feel much better when pushing myself physically, that's the way I am, and no amount of therapy will change that, so at this stage I'd rather trust what my body tells me and see where I can go, rather than follow "expert" advice and do nothing. If you have no ambition in life and do nothing, you usually get nowhere, that's what life has taught me at least.

Do patients today get more support in terms of rehab? Why isn't there a greater effort at helping us minimise the handicap we have to live with? Is it all about money ie cost of physio and cost of prosthesis replacement?

Thanks for any info.

David

[Mary]

David, you bring up some interesting topics that we tend to bounce around from time to time.

First off, about the scintigraphy. For those who don't know, the bone scans that most of us have had to check for tumors are a form of scintigraphy, or nuclear diagnostic testing. I have not heard of any patients who were given scintigraphy to try and discover the cause of muscle/tendon/tissue pain. Perhaps this is a possible way to diagnose causes of pain, but I have not heard of it. You can read more about it here.

Many of us have relied on x-rays to try and discover causes of pain. Usually CT scans don't work because of the titanium/metal. I personally had a musculoskeletal ultrasound. If you get a very good radiologist, he may be able to tell you a lot about your joint by using ultrasound, more than any other technique. The problem is that even with ultrasound, it's hard to see around all the metal and the bone and to see what is going on with the tiny ligaments and thick tissues in a joint. But it is worth asking about.

About your pain - it sounds familiar. Reading it was like reading a nasty prediction for me! I have the stabbing pain in my shoulder, usually when it is overtired or used in certain ways. I guess I can imagine one day that this will become the constant state of that joint as things deteriorate. I am sorry to hear that things have gotten worse...pain with walking is not cool. I'm sure a lot of people here agree and share your frustration.

This is how I see it. The speech you got from your doctor 16 years ago about not using your joint...that was probably overkill. Your joint was new and you were young. The speech you're getting now...well it's a little more justified. Your parts are 16 years old. Most of these replacements only last 10-20 years. I believe the reason that the doctors don't try to help us get more function is that saving the limb is their biggest challenge. They see people lose limbs when these surgeries don't work, or when people go out and do extreme sports or whatever. The new joint comes with limitations. And it gets old, and then another surgery is needed. And sometimes they can't save the limb on the second surgery, OR the second surgery makes pain/function issues worse, even with a new joint. That is where the extra caution with your current joint makes some sense. I think the doctors see it this way: whatever your situation is now, you need to make the most of it, because right now is probably as good as it will be. If you have pain or problems, they tend to get worse over time. It sounds grim, but I think it's true. Some people's bodies do great at recovering and compensating with some PT, and others don't. I don't think surgeons count on PT to make things better after they remove a ton of our muscle and bone. And I don't know that our surgeons are that concerned anyway, because they are CANCER docs. Cancer is gone - check off the list.

Of course, this leaves it up to each of US to find that balance of living our lives AND taking care of our bodies. I know what it feels like to want the pain to go away and to want to do more. I am doing more now than I was a year ago...just not with my arm. And doing more does make me feel better overall, even though I still have the same pain and limitations. So I think this affirms a typical physician viewpoint: the cancer is gone, you're stuck with a replacement part, get out there and live your life and try to take care of the replacement part at the same time.

So if everything looks okay with the bone scan and x-rays, then options become PT, pain management (meds, complimentary stuff), surgery, or new mental adjustments. I'm not sure there's much else? Many of us are living in this place. Luckily, a lot of us get random breaks from it!

[David]

wow, Mary, I don't know how you keep up with our posts, have you cloned yourself?! 

thanks for the reply!

I think surgeons should get a life and start looking at what affects our lives *after* surgery and chemo!!!!
I don't think life without quality is worth much, so if physio helps protect our prosthesis and improve our lives, let's go for it!

The resident doctor who looked at my scintigraphy results asked me where the pain was, and after I told him confirmed he didn't see anything pointing to that on the bone / prosthesis side (only potential risk was at bone / prosthesis insertion). So all is well and good 16 years on, so I didn't abuse it that much.....   

More seriously, it confirms what I thought all along, it's muscle / tendon related. I'll have to hope the orthopaedic surgeon refers me to a decent sports physio otherwise I'll have to find someone myself. If I don't try anything the pain will just remain. I disagree on it having to get worse, I think developing muscles can protect not only the prosthesis but also potentially the source of the pain.

I'll see, I feel like trying to do something, it's something to aim for, and that's what I need in my life right now.

Your pain sounds much worse Mary, sorry to hear about it, mine is "nagging" but can also "jolt" at times, but currently is more bothersome than painful. Slight pulling / stretching sensation with hint of pain, just enough so I notice and get annoyed. At other times it's more painful - I think humidity makes it worse. No real explanation for ups and downs, but I'm still essentially functional. Just as long as I don't run, but nothing new there.

Not sure I can ever adjust mentally  so right now my approach is to see if I can "push" myself a bit more and make progress with the muscles I have left.

Good luck to anyone else going down that path. The effort can be worth it, I made huge progress in the pool 16 years ago and by exercising at home.

cheers Mary,

David

[David]

update: bones / prosthesis are ok, ie nothing broken, not that I expected that to be the case.

Now seeking appointment with physical rehab / physio specialist to do a full diagnosis of muscles, attachment points, tendons.
I hope I can at least understand why I have recurrent pain in several "points" and also with my iliotibial band.
I have regular pain even with no effort, just putting weight on my leg or walking up stairs and I sometimes feel a slight pain, or sometimess a "jolt".... not nice.

I just hate the thought of being physically limited....even if I was operated in 1990.
(yes, it could be worse, yes, other people have a harder time, but it is a nightmare for me)

hope this doesn't shock those of you who are going through treatment and don't know what the outcome will be, or those of you still having checkups and worrying about a relapse, it's just that life for me has much less meaning without being physically "whole" (and I fear no amount of therapy will help)

take care,

David

[Cari]

Hey David,
Please keep us posted on what the physical rehab tests show.  I am curious about what they would do and how they tests attachment points, muscles and tendons and if they do give you exercises to help those things.
Thanks and good luck Cari