Protrusio acetaboli here, any one else?

[Ducky]

Aloha! I'm a 36 year old woman living in the middle of no where with a scardy service dog and three bossy cats. I was diagnosed with bilateral protrusio acetaboli earlier this year. When I was 18 and in Army basic training, I started having pain in my right hip marching and running and sit ups were torture! The pain got worse throughout my service (duh, I ran, did road marches carrying 100+ lbs on my back, carried full grown men on my shoulder, jumped out of helicopters...) and eventually during a required road march, my right leg went totally numb around mile 6 of a 12 mile ruck. That is when the Army offered me a medical out, which I took after 4 years of service. After about a year of doing nothing, I felt much better and was able to lead a mostly normal life. I even picked up tae kwon do and kick boxing The pain in my right hip slowly got worse until my early 30's, when now it seems like it's getting worse more rapidly, not just in my right hip anymore, but both. I no longer work, the pain to wage ratio just wasn't good enough to make me continue working. I am in pain all day long, I struggle some days to do basic things, stairs are like cruel obstacles put there by evil squirrels (seriously, they taunt my dog, they are pure evil!), and sleeping? Oi! I consider waking up 5 times in pain in a night a "good" night!

Until this diagnosis, I have been most ignored by my medical care providers. I have used the VA since I got out of the Army. The Army categorized my hip pain as "generalized lower back pain" so the VA staff didn't try very hard. In 14 years I was sent to physical therapy once (twice if you count the one time in the Army!). Not that it helped, but that it's an option to try to find the problem. I finally asked my primary care provider to see an ortho doc and she actually got mad at me! Said I was using her, making my own diagnosis. Luckily, I got the referral. The ortho doc was a hip specialist and was able to diagnosis me rather quickly. I was given a cortisol shot in my right hip which did nothing for me. Then I was told that it would be AT LEAST 15-20 years before the VA will give me a hip replacement. I asked my (new) primary care provider why and got the "you're too young" and the "replacements only last 20 years" spiel. All I was given for pain meds is meloxicam and flexeril. The VA is afraid of people getting hooked on narcs, so they avoid prescribing them. Yay.

So now, unless I win the lottery and can afford to get a bi lateral hip replacement (or whatever is the new surgery for my condition) from civilian doctors, I get to just sit and wait until some government bureaucrat decides I can have the surgery. This scares me. I don't have a clue what to expect. I have researched the condition but because it's so uncommon, there really isn't more than medical journals to read. I was a medic in the Army and was in school to be a physician assistant, but some of the jargon is above me! And from what I have found, most of the information is in the diagnosis, not the long term symptoms. Will I eventually be unable to walk? Will the pain continue to increase? Will I pinch my nerves more? Will it affect my knees?

I was told to exercise by swimming or using an elliptical trainer. I can't afford a car and live in the boonies, so going to a pool is out. I was thinking of buying an elliptical trainer, but am scared it might cause pain!

I'm also training my own service dog. She knows quite a bit of stuff already, but since I haven't a clue what is in my future, I'm at a loss as to what else to teach her. Should I teach her to take off my socks? To help me pull up my pants from the floor? Are these going to be issues?

I would have the hip surgery tomorrow if I could! I don't care if they would have to go in and do it again in 20 years, at least then I could lead a productive life for the next 20 years instead of becoming more crippled.

Any suggestions, first hand experiences, information, anything at all is greatly appreciated!

 

[Josephine]

Hi and welcome to BoneSmart! We've had quite a number of AP members over the years but sadly none are currently active now.

I have researched the condition but because it's so uncommon, there really isn't more than medical journals to read.

Your problem in being unable to research it is that protrusio is a late stage of the primary condition which is hip dysplasia or dysplasic hips. Those are fearfully common. Protrusio of itself is not a primary condition. But by definition, dysplasia is a developmental condition which has most likely been present since birth so it inevitable affects young adults. My guess is that the surgeons you have been seeing are more accustomed to dealing with patients with standard osteo-arthritis and these do tend to have closed minds about the age thing. But we've also had a number of members in their 20s even, who have had THRs because of dysplasic hips.

For example, this is our star member, shugaplum, who had her dysplasic hip replaced at the tender age of 24 and two years later, in 2014, gave birth to a fine baby boy!

Will I eventually be unable to walk? Will the pain continue to increase?

I would say yes to both those questions. If you do have protrusio, the danger is that the femoral head will break though into the pelvic cavity with catastrophic consequences.

Will it affect my knees?

These kinds of issues do refer pain into the knees but it's not because the knee joints have arthritis or anything.

I was told to exercise by swimming or using an elliptical trainer. I was thinking of buying an elliptical trainer, but am scared it might cause pain!

Not a good idea! Never mind the pain, it could worsen the protrusio!

I'm from the UK so don't know too much about the VA and US healthcare systems but my colleague @Jamie does and I've tagged her to come and discuss this with you in the hopes that there is an alternative way for you.

 

[Josephine]

This is an xray comparing a normal hip to an early/moderate protrusio

and a severe break through

 

[Toddlermom]

All I have to say is OUCH! I also have bilateral hip dysplasia.....but it hasn't progressed that far yet. I had my first repair surgery at 37 but I am finally having a replacement soon at 42. (Should have replaced it at 37, but I didn't fully understand the structural problem). I danced 3 hours daily in my early 20's because I was a very active participant in musical theatre....and the fan kicks killed me! Since you have always had hip pain, it is too easy to simply accept it and wait. I did it for YEARS. One primary care doctor's opinion cannot be the final decision on something like this, can it?

I also do not understand the VA system. If a shot didn't work, can you not go back to the OS? My OS told me that shots wouldn't work with my dysplasia. Call them or get a second opinion from a different OS who handles more hip disease cases? From what I understand, hip replacement IS the solution. If there is a way to become your own advocate, and find a surgeon within the VA system who specializes in hip diseases. From what I understand, hip dysplasia is about 10% of all replacements....add that it is a case of protrusio ....... You need to find someone who understands this condition. And work to educate your primary care doctor. Surely, you don't have to wait in pain for 15 years.

I am so sorry that you are having to negotiate this.

 

[Ducky]

I certainly appreciate the information Josephine! It's good to be more informed about what will happen to me. Have to admit though, knowing there is a good chance I won't be able to walk and get to enjoy increased pain made me cry all night long!

In the civilian world, would I be eligible for a hip replacement (or whatever the surgery is for PA) now? I will do whatever I can to get surgery sooner, the idea of waiting 15-20 years to get so bad I can't walk is not something I can stomach. I'm pretty sure I'd have to pay for the surgery myself if I went through civilians, but maybe there is some sort of program that helps veterans? Or the poor? I fit both categories! Heck, I'm even willing to sit on a busy street corner (with tons of padding to sit on) with a cup begging for money if it'll help me get the surgery!

I guess until then, my service dog will be in (home) school to learn all sorts of new "my master can't do anything for herself" kinda stuff!

 

[Ducky]

Unfortunately, the VA isn't run like the rest of the medical world. I don't have much choice when it comes to a primary care provider and even less choice when it comes to specialists. The OS guy I went to was the only hip specialist in the state, so he's what I get. He's the one who said no surgery for 15-20 years. He also told me I need to exercise and to work. From what I'm reading, those aren't things that should be suggested for someone with my condition! So he's probably like every other VA doc, WAY behind on the times.

I don't understand why the military and the VA are so far behind medically, it's during war that we have come up with the most amazing medical breakthroughs, which were found by those treating the soldiers - the government - yet even basic medical care is substandard. I was given flexeril and meloxicam for pain and was told if that doesn't work, they have no other options for me. Basically, the VA wants me to keep my mouth shut and be happy in 15-20 years when some government bureaucrat decides it's time for me to get surgery.

I'm honestly afraid of fighting the VA for treatment. I have heard so many horror stories of veterans fighting the VA to get proper medical care who have ended up on "waitlists" (so other workers at the VA know to avoid treating that person), lost their benefits, and every other unpleasant thing the government can do to you. Heck, my original primary care provider literally yelled at me and lectured me when I asked to see the OS guy. I apparently "overstepped" my boundaries by trying to figure out what was wrong with me instead of waiting another 14 years. I now have another one, but he doesn't seem to be much better. He's a much nicer guy, but doesn't seemed to be any more inclined to help me than the first one.

I'm trying my hardest to be positive, I mean, it's only a temporary disability, right? Not like I lost a leg entirely or something. Things WILL improve with surgery, so there is light at the end of the tunnel. But I gotta admit, I'm down right angry at the VA for leaving me to my own devices when it comes to something so serious. It's almost spirit breaking knowing I'll be stuck in this house for the next 15-20 years just waiting, not working, not doing anything productive, putting a huge chunk of my life on hold.

Thanks for sharing your story Toddlermom, I know it's not the same as mine, but it certainly helps knowing I'm not the only one!

 

[Jaycey]

So he's probably like every other VA doc, WAY behind on the times.

Yes indeed. THRs are no longer the op for the elderly. In fact, at age 58 my OS said I was young for THR. But I too had dysplasia. Just had my second THR a year ago.

I hope Jamie can help you find a way around waiting! Life is too short to live in pain. I waited 3 years for my LTHR and the joint finally collapsed. Not fun I can tell you.

I mean, it's only a temporary disability, right?

Yes but if you are limping around for a very long time it may be very difficult to correct the habit post op. I found the longer I waited the longer the recovery.

 

[Toddlermom]

My goodness!
Likely a VA doc might not have as much exposure. I gather the underlying condition of dysplasia is far more likely to occur in females. You might contact a non-profit like hip dysplasia.org. Or a teaching hospital in your state? Maybe a top surgeon would take your case pro bono?

 

[Ducky]

Those are great ideas! I'm pretty sure there can't be too many surgeons who have worked with PA. I'll look into the other two suggestions. What great ideas, thank you!

 

[Ducky]

Does anyone have any experience with stem cell regeneration? It seems like depending on what source used to harvest the stem cells, is what those stem cells can be used for (which I don't get because I thought stem cells were basically blanks waiting for orders). I looked into half a dozen clinics/hospitals that use stem cell regeneration and half of those talk about bone regeneration.

I tell you what, I am a heck of a lot more excited about two small incisions and being able to walk out that day, than being flayed open with hack saws and having my flesh filleted off my bones!

There just seems to be too much vague information, not enough substantial information. Anyone?

 

[Toddlermom]

From what I understand.....if the basic hip structures are insufficient, it isn't a viable option for dysplatic hips. The doctor explained it like this.....you have a canary (my cartlidge) in a mine shaft (a too shallow socket). It dies. If you simply put another canary in there....the same thing will happen. Again, I don't want to discourage you. But a new hip fixes the structural problems....Because stem cells won't change the shape of your pelvis/socket.

A second analogy was used......If dysplasia is the underlying problem, you have been 'driving on a set of unbalanced tires for 42 years'. If you simple change the tires.....without balancing the new ones....you ruin the new ones too.