Which Surgery do I choose??

[prinny68]

Ok, so I am trying to get some information, and thought there HAS to be other people going through the same thing I am. I am 27 years old, a mother of 3 that works full-time, goes to school part-time, and have a neurological condition called Charcot-Marie-Tooth disease. With this condition, I began having severe pain in my hips, though moreso in my left one, approximately a year ago. Now the pain is so severe, going to the grocery store is so painful, I have to have a cart to hold on to, to get through the store on my feet, and I am typically in such severe pain when I get home that I'm in tears, or unable to move. The pain wakes me up in my sleep EVERY night, atleast once, and has affected every portion of my life, including things as a mother such as that I'm unable to stand for long periods of time, go trick-or-treating with my kids, or any other physical activity(shopping is terrible!). And of course, living in WI, the cold has set in and it magnifies the pain about ten fold! Now I first saw an orthopaedic here at my local clinic, who referred me to a specialist in Madison, for congential hip dysplasia. Apparently this is caught in children most frequently, but because I wasn't presenting any symptoms as a child, this either just wasn't caught until now, or the CMT has caused my hips to move as a result of the muscle and nerve damage in my legs(my one calf is significantly smaller than the other). So I was referred to a pediatric orthopaedic surgeon. He told me I have three options, a THR, an osteotomy procedure(cutting my pelvis in three places, moving the middle chunk of bone over my femur to promote better femoral coverage, pinning it back together, and going through 3-month non-weight bearing recovery and pt), or just drugs(non-narcotic anti-inflamatories that have done nothing thus far) and hip strengthening. He was really shying away fromt the THR with the understanding that this will require more surgery in the future(and I'm so young), and is really pushing for the osteotomy which should buy me 20-30+ years before needing a THR eventually anyways.... So now i have to choose. The osteotomy procedure, I am told, is a very risky surgery, with lots of chance for complications, and there are only a couple of handfulls of dr's in the US that even perform that surgery. And of course, the choice is up to me. No suggestions either way.... The specialist I saw a few weeks ago, is not the actual surgeon that would be performing it, but one of his partners, so now I have an appointment with the dr that would actually perform this risky procedure, next week. And honestly, I don't even know the questions to ask. I HATE this, but being teased with the possibility of being pain free, and getting to be ME again, sounds so exciting!

Please if anyone has heard of the osteotomy procedures, and the pros and cons of that and the THR, please help.... I want my life back, but have never had another surgery other than a c-section(well two of them) and am terrified of major surgery!!! HELP!

 

[Josephine]

I know of the osteotomy procedures - there are a two prominent ones: the Salter - mostly done on children and the Chiarie - mostly done on adults. Both are done to deepen the acetabulum or socket of the hip and give the hip stability. The Chiarie is a good procedure to achieve the objectives but has the unfortunate consequence of affecting the internal anatomy pelvis which can be crucial in childbearing. And since this (hip) condition is most prevelant in females, it is an important consideration. Subjects often have to be delivered by ceasarian section when they have had a Chiarie osteotomy. Plus the outcomes of osteotomy are not always that good so far as I have heard.

However, I notice you do not mention hip resurfacing. I would have thought it should at least be considered. I suggest you take a look at this site and get some really in depth information on it. I have some reservations about HR but it would certainly be the procedure of choice in a case such as yours, I would think. That website will be able to give you specific detail and also put you in touch with surgeons who would assess you for suitability. Please don't do anything until you have looked into it.

We also have a new forum on resurfacing here but it has little in it yet. What is there might be of interest to you. Hip Resurfacing Arthroplasty (RA) .

Please let me know how you get on ...

 

[prinny68]

I have had three children, two by c-section, and have tied my tubes, so no worry with that issue for me. But as you mentioned my problems according to my x-rays is that my sockets are not deep enough to cover the femoral heads correctly, which is causing both to shift and move. It is VERY painful! I walk with a limp as I've stated before, and honestly would just do anything to take the pain away. I want my life back!!! The drs have all but ruled out a THR because of my age, and the fact that there is little no arthritis showing in the joints, they are just positioned badly. I'm just not hearing good things about the osteotomy procedures, from what I've read, and honestly, that scares me more than the HR does. I just wish there were counselors or something to say, "In all of the cases like your's I've seen, this is what I would suggest you do". Which is why I am here..... The doctors didn't say for sure that they wouldn't do a THR, so should I push for that surgery?? Or like you said, really push and see if the resurfacing would be an option. I've researched so much on my hips over the last few months, that I feel like I'm driving myself crazy. But honestly, the daily pain in my knees and thighs and groin from my hips, is literally driving me crazy! I'm NOT a pleasant person to be around anymore, and I hate that this decision is up to me. Because I'm not a doctor so I DON'T know what is the best choice!!! GRRR!

 

[Josephine]

I fully understand your situation, truly. And I will do all I can to help. The fact that your hips are not arthritic should not debar you from having a resurfacing. Please go and talk to the surfacehippy crowd. They are a fount of information on the procedure and I am sure you'll find that is the way to go.

Personally, I would NOT consider an osteotomy but that's just my opinion.

 

[prinny68]

Could you please also tell me what the risks are for a smoker and surgery. Obviously i know smoking is bad for you and it can cause thrombosis issues, but how absolutely imparative is it that i completely quit smoking before surgery?

 

[prinny68]

Actually I do have uneven joint space.... near the top of the femoral head I have little space in between, and near the bottom i have quite a bit.... so it's very uneven....

 

[Josephine]

It's true that smoking can help cause thrombosis as it causes the bood to thicken and some blood cells to become sticky. But it can also cause restrictions in the lungs, an accumulation of mucus which is difficult to shift and reduce the oxygen/carbondioxide exchange in all tissues but especially the lungs.

I would suggest that the sooner you give up the better as it gives your body the chance to return to good health.


BTW, I suggest you go to surfacehippy for an answer to your question.

 

[jaz]

Hi Prinny,

I am 39 and had a congential hip dysplasia. The symptoms started to show up when I was four but not properly diagnosed until I was about eight. When I was about ten I had a bone graft to build up my hip socket and stop it disclocating. I'm not sure if this is the same as the surgery they are suggesting for you. The problem with this surgery, as you could imagine for a ten year old, was being in a cast from my waist to my toes for six weeks followed by two weeks of traction then crutches. After the surgery I had a leg length discrepency of about 3/8 of an inch which caused wear and tear on the hips and lower back. I was told I would get arthritis and need a hip replacement in my early 20's.

Having said that, I then had a very active life avoiding running and jarring sports (netball, tennis etc) preferring walking, biking, skiing, sailing and so on. I've also had two children naturally.

This year, I was experiencing a lot of pain, difficulty with most physical activity including standing for long periods and my life was slowing down too much for my liking so I went to see an OS who recommended THR. I'm now five weeks out and am very pleased with the results. You are young so will bounce back physically from the surgery whichever way you choose to go.

 

[prinny68]

Well I am keeping my appointment with my ortho specialist next week, however am now possibly checking into the resurfacing option. I found out that a very recognized surgeon here in WI Dr Rogerson that does the hip resurfacing often, will most likely not be covered by my insurance (Deancare) since there is another surgeon in the Deancare plan that does resurfacing. Does anyone know anything about Dr David Wolff from Madison, WI? I haven't been able to find him on any kind of forum or anything, so I'm thinking he is probably pretty new at the resurfacing aspect of the field. This makes me nervous knowing my insurance most likely will only cover him if I choose the resurfacing. UGH! I don't know, any suggestions from anyone? I am going to bring the resurfacing issue up to the surgeon at my appointment next week and see what his reaction is. Because I know he's going to push the osteotomy procudure :(

And today is a very PAINFUL day!!! OUCH!!!

 

[rejoyce318]

IMHO, what OS in his/her right mind would suggest a procedure that requires a mother of 3 young kids to be non-weight-bearing for 3 MONTHS?!

I'm just sayin'.

 

[UTdave]

Be VERY careful about which surgeon you choose if you opt for re-surfacing with dysplasia as an indication! The outcomes are poor in the wrong (i.e. not really, really experienced) hands. My case is far more mild than yours, with symptoms not really beginning until about 18-20 yo, but I opted for THA after quite a bit of research. I'm not even half-way through the process, so I can't say how it will be yet. But thus far, am quite pleased. Not really sold on THR for dysplasia. The hip revision specialists in town tell me they usually have to revise the cup rather than stem and so the bone stock conservation does not seem to them to be a real benefit. That being said, I spoke with one of our local world-class mountaineers who had her hips re-surfaced last year and seems pretty pleased with them and is back to rock-climbing, mountain-climbing, etc. She went to Europe for surgery, of course. . . Nothing's perfect and nothing lasts forever, but no reason living in daily pain without even being able to put your socks on, so I say go for one or the other!

 

[mvo]

Hi Prinny, I can only echo Dave – do make sure your resurfacing surgeon is very experienced and do read up as much as you can. I too have dysplasia and decided on a THR for my left hip (10 weeks ago), but it was a very tough choice and I will look at hip resurfacing for my right hip in the next year or two.

All the best,
Monica

 

[Stanj]

Hello Prinny68
It sounds as if part of the problem in deciding is the restrictions your insurance company imposes.
My complete amateur opinion is to get more of them....opinions that is. The resurfacing is much less invasive so has less risk and more predictable results. Pain might be eliminated or not, that depends on many factors that means every patient has a different experience.
The general resistance to THR for younger people becomes less justified as the wear life of the prosthesis continue to improve.
On my one case, I had daily pain for years and my pelvic bone had twisted and shifted after years of bone-to-bone rubbing. The only relief I had was for the last few months before the THR was done, I was given some anti-inflammatories that helped a lot.From the moment of getting out of surgery June 1, I had no pain, none. since during recovery except for just getting muscles to work again. No pain medication was used or needed. So there are outcomes that are similar to your goal but not everyone has that result, at least for a few months of recovery.
There is a lot of patient chatter on medical forums between resurfacing patients so some effective search phrases in Google would be useful to find them.

There are patient advocacy groups who go to bat for patients against their insurance companies, and almost any company can be forced to cover normally covered procedures using doctors outside their provider group if there is a medically justifiable reason.
Another alternative is to propose to the insurance company to cover a foreign operation, it will cost them 1/10th as much and dozens of insurance companies are covering travel to other countries due to the lower cost and liability. I had a very successful and quite frankly enjoyable experience, if any surgery can be called "enjoyable", in a foreign country. I was back at work, walking for grocery shopping and to work, 3 days after release from the hospital.
I covered it myself since Kaiser which whom I was a member for many years would not cover my THR at all. Estimates in California were from $60-90K a few years ago, and likely twice that now. Mine, turned out to be less than a complete physical, or a week's worth of post surgery medications in the US.

And look into foreign hospitals, particularly in Europe and Scandinavia since they have the best medical care in the world, and MUCH cheaper. There are also specialty hospitals in India, Thailand geared towards foreign nationals traveling for care.

The unfortunate state of medical care in the US means you have no rights that you do not demand and fight for. If the best option is not covered, fight for it, they might relent only to shut you up. Do not accept anything pushed on you, it is probably in someone else's benefit, not yours.
Good luck!

 

[prinny68]

Ok, so a few more developments have occurred. I had an MRI/arthrogram done and just got the results back from the nurse. I will follow up with the dr on Dec 10, but thought I would share what she could read to me from the radiologist. Apparently I have a confirmed bilateral hip dysplasia, anterior labral tear in the left hip, osteoarthritis changes bilaterally, and a subchondral cyst on my right hip. I have acetabular/femoral neck impingement, and an abnormal femoral neck angle.... Ok, so I'm not a dr and I know what some of this means, but can anyone translate and guess what they are going to tell me is the best surgical option to choose? Still three to choose from: osteotomy(not too favorable in my opinion), resurfacing, or replacement. Any thoughts???

 

[UTdave]

Prinny,

I suspect you'll need re-surfacing or replacement. I saw your post about the arthrogram also. I have no idea how to interpret that, but can tell you that for me, the femoral impingement caused the most grief due to pain when you hit the end of your range of motion (that's the impingement) and the severe overall decrease in the range. I'm not sure either of these problems are solved during the arthrogram process.

With regards to resurfacing, see some of my other posts. The abnormal femoral neck angle is referred to as a pistol grip deformity and even a layperson can see the difficulty of making this problem right with a resurfacing alone. Make sure to pin your surgeon down on this as the pathology and results of surgery are not the same with hip dysplasia vs run of the mill osteoarthritis that many people on this forum (and others) have.

 

[Josephine]

bilateral hip dysplasia
Dysplasia is the medical term for partial hip displacement, a mild form of congenital disclocation. The growth of any joint from pre-birth to around 6 years is dependent upon the presence of each bone to form its place on the other bone. In the hip, this means the acetabulum will only develop that nice cup shape if the femoral head is present. And the femur will only produce that nice round ball shape when it is inside the acetabulum. So if the joint is not properly aligned, the joint will not be normal.

acetabular/femoral neck impingement ~ abnormal femoral neck angle
These two are combined. Part of the reason the displacement occurs is that the femoral shaft has not developed properly either. The neck/shaft angle should be around 125 degrees. Anything other prevents proper joint development.

It sounds like your angle is more like C if you have impingement. I think you can see the problem.

anterior labral tear
The labrum of the hip joint is a ring of fibro-cartilage material that acts as a kind of "O" ring to deepen the cup and provide a pliable valve seal giving security and stability to the general joint function (note the red Xs on the image). Like the mensical cartilages in the knee joint which serve much the same purpose. A tear means loss of stability and pain.

osteoarthritis changes ~ subchondral cyst
These two also often go hand in hand as both are caused by the wear and tear scenario. People often assume that arthritis affects the cartilage only but this proves otherwise. ALL the structures in the joint are affected.

Still three to choose from: osteotomy(not too favorable in my opinion), resurfacing, or replacement. Any thoughts???

In my eyes, a cyst would almost certainly rule out the osteotomy though whether more or less would depend upon the site of it - femoral head NO/acetabulum maybe - but otherwise, I would think the choice of HR or THR is debatable and dependent upon the type of surgeon you choose. Choose well!

 

[mvo]

Like Dave above I suspect your choice will be between a hip replacement and hip resurfacing. I am also a member of the dysplasia club and I was, and still am, strongly attracted to the resurfacing route. But in the end, for a few reasons, I chose the replacement option. Sure, I have lost the bone, but I have got my life back, and I can’t begin to describe just how wonderful it is to be pain free.

Until I talked to one surgeon, I didn’t realise about cysts (his opening line when he put up the x-rays was “Whoa, look at the size of those cysts!”

If you go for resurfacing, would your surgeon have the “spare parts” on standby for a replacement, if once he got in there, resurfacing didn’t look like such a good idea? Just a thought. As Jo says, most important thing is to choose your surgeon carefully.

All the best,
Monica

 

[AlaskanTKR]

Prinny-

I am having a hip arthroscopy on 12/18 for FAI (the impingement thing) he now has also decided I may have some tears plus there is extra ossification. I am not nearly to the point you are - although we didn't even do MRIs or anything else since the xrays were so telling. if you want further info on the impingement stuff PM me - I have a bunch of really good websites that really go into detial on that. i may end up with a THR sooner than I would like but am thinking positive and hoping this procedure will prolong the life of the hip - we won't really know till he gets in there - talk about the unknown!!!!

Anyway - best of luck and keep us informed!

Marianne

 

[Josephine]

Well, Marianne - I'm hurt! Why keep them to yourself?


And just for the record, MRIs don't show up bone anywhere near as well as xrays do. Of course they might show up a labral tear but o/a? Not particularly well.

 

[UTdave]

Josephine,

Nice post and pictures! Worth a thousand words, or something like that ;-)

I'm guessing in the UK you've had more experience with resurfacing? How do they rectify the abnormal femoral neck angle pictured in B and C above? My xray looks just like B and I imagine shaving the femoral head down and preserving that horribly abnormal shaft may get rid of the pain, but not do much to solve the abnormal angles and, thus, abnormal ROM, etc.

Lastly, could you shed some light on stress shielding? I understand the process, but cannot get it in my head how it can be entirely avoided with the introduction of any implanted device used to support a person's weight. I see on a few forums that people claim that resurfacing has "eliminated stress shielding". How? There's still metal that's unnaturally re-distributing your bodyweight. Isn't that one of the theories to explain the femoral neck fracture seen in some studies?