Dysplasia and resurfacing

[Spanielsal]

I think it would be really interesting to have all the folks with dysplasia link together and wondered if you would like to chime in here.  we have a particular problem with shallow sockets and small femoral heads and it would be good to see if there are common threads in our experiences. 

My story: I'm struggling to sort out my right hip.  my old surgeon no longer does resurfacing on women, am seeing a new surgeon who is a much respected expert, I was waiting to see him since Feb, so i need to work through the system with him and see what he says particularly given that i've got lots of different problems.  If I want another resurfacing my only hope might be the popular Mr Treacy in Birmingham but Xrays are not showing sufficient signs of OA to have any op yet i'm struggling, I am now waiting for MRI and blood ion results. 

Would it would be good to link together, do you think?
Sal

[Dannywayoflife]

That sounds like a great idea Sal! I do feel for the people like yourself who have significant pain but no OA so no HR.
I had fairly advanced OA in mine but ill never forget when my stupid GP said that the athroscopy report was wrong as he'd never seen OA in a patient my age in 30 years!
A colection of patients all with the same issues can only be a good thing in my view!

[Anna]

Great idea Sal 

[Dee Dee]

Sal,

I read over and over again that much of the joint damage can be hidden from X-ray, especially in dysplasia cases.  Those films are a one dimensional view of a three dimensional problem!  Until the Dr. gets into the joint you just don't know the extent of damage,  but we know the symptoms!!!!

 I had so many different doctors tell me different things about my right hip.  It started with random buckling where I would have a sharp pain and then the hip would buckle but my leg would catch me from falling to the floor.  Other problems were going on at the same time and showed up on the MRI  (uterine fibroids) I still wanted answers for my hip. One Dr. said possible dysplasia but not enough oa to understand my pain level and other symptoms. I did have leg braces as small child, but  my mom is deceased and my dad does not remember the actual diagnosis.

Upon recommendation of my PT I started looking for more help. This process took five years, surgery for the fibroids and another diagnosis of spondilolisthesis.  Still the hip was getting worse.  The famous Dr. Byrd in Nashville said i did not have enough room to do arthroscopic repair.  They referred me to a Vanderbilt dr for thr who said he would if i wanted because of quality of life.  I wanted a "fourth" opinion before chopping off my femur.  Another ortho dr back home said he would not consider a THR that my films did not show I was "ready".  I finally had a hip arthrogram that proved labral tear and damage but wanted a better choice than THR.  BTW the arthrogram really inflamed the area and caused more symptoms.  Then I found this website!!!

After reading about the importance of an experienced Dr., I chose  Dr. Gross.  Finally someone with answers!!! At my pre op appointment he suspected my hip had mild dysplasia from the  films. His first question was "are you very flexible?"  I used to do acrobats as a kid and have kept most of my flexibility all my life even though I am an overweight non athlete.  According to Dr. Gross the films definitely showed enough damage to warrant surgery.

I am one week post op. Dr. Gross said I do have dysplasia.  He did not seem to think that affected his ability to perform the rs and showed me my placement angle of 30' on the X-ray. He said I have very strong bones.

My left hip is now showing the same symptoms that my right hip started 5 years ago.  I have range of motion issues and random buckling.  The scary part is that I buckled while walking on my crutches yesterday.  Dr. Gross said that he would consider operating on the left hip and gave me 6 months to see how it is doing because it is not as bad as the right hip.  But he agreed that it is showing damage.

That is my dysplasia story.

_____________________________________________________________________________
Right HR 5/23/12 Dr. Gross
50 yo  homeschooling mom of 5

[Spanielsal]

Dee Dee, thank you for sharing that. Very scary buckling whilst on crutches, I hope it holds up for you.  It seems that lots of doctors don't really see many dysplasia cases and thus don't understand the levels of pain that can be present. It's great that you've now had your RS and wow, 30* angle that sounds good. Here's hoping for a smooth recovery for you, and perhaps your other leg will improve once you've stopped relying on it to support your operated side as you recover. Fingers crossed! I also wonder whether the good joint space is from loose ligaments caused by the slipping or buckling joint that seems to go with dysplasia. Sal xx

[rubyred]

Hi Sal,

As you know i'm a fellow Dsyplasia sufferer and unfortunately my OA isn't bad enough to warrant HR. I can only imagine how bad the pain has to be to get that surgery!! The pain now is unbearable.

I am now a patient of Mr Bache in Birmingham. I was referred to him by Mr Treacy and I had my first appointment with him this morning.

A further arthroscopy is out of the question for me, my problem is mechanical therefore a wash out would be of no benefit whatsoever. He could perform a POA on me however my age is running against me (i'm 31). It all depends on how my cartilage is and he's sending me for a CT scan to assess this. If the answer is no then pretty much i'm stuck like this until my hip gives out and I'll need to have a replacement

[Anna]

Sad times people. I sometimes find that chocolate helps with the pain 


I have no idea what you guys are talking about half the time which can only mean that I have been naive and perhaps have a long way to go. A steep learning curve is ahead for me. I do however understand the pain and the suffering and just cant understand how there isnt anything that can be done. It is the year 2012 after all. It is nice to  talk to others in the same situation though. I really did start to feel like I was the only person in the world with hip dysplasia (and thats a pretty lonely place to be!)

Do any of you take part in any sport still? I took up cycling last year and I now couldnt live without it. My hips hurt 24 hours a day no matter what I do. Working, sleeping, watching tv .... and yet I set of peddling and it is the only time I suffer no pain. Its my release and my one time I can really enjoy myself.

[Dannywayoflife]

Anna in answer to your question on sport, there are many on here whom have returned to high level sports. I come from a background of high impact stuff like Thai boxing and Brazilian ju jitsu and I'm not yet back to them however I'm back in the gym and can happily cycle 10 miles and the rest is just a matter of time.

[mhiller]

I am a 52 year old women with hip dysplasia and am currently researching the possibility of resurfacing.  I have some doctors say I am a candidate and some say that I am not.  The one's that say no, say I am a bad candidate because of my hip dysplaysia (which I was unaware that I had until a few months ago).  I was told that most young women that have arthritis is due to hip dysplasia.  Does that mean then that is why women have more trouble with resurfacing...due to dysplasia and consequently anteverted femurs???  This is what i understood from the reluctant doctors.  Have other people with hip dysplasia gotten similar comments from their doctors?
I sent my X-rays to Dr. Bose in India and he unfortunately didn't comment on my specific case but gave his opinion why women have more trouble.  He said that femur head size is an important factor and people under a certain size (44mm) he recommends a THR using the Deltamotion Ceramic system. 

He wrote:  "Having done more than 2,300 resurfacing I am confident that the "cut off" for this is 44mms femoral head size.  If a patient has size 44 and above, I offer them resurfacing which of course is the best option for a highly active patient.  If it falls below 44mms then I offer a big breakthrough in hip arthroplasty especially for female patients who typically have small bone size.  This will give comparable functional level as a resurfacing though the head of the femoral bone has to be removed.  One must keep in mind that the large head is the key to giving function in a patient and not resurfacing per se." 

Has anyone heard about Deltamotion and Dr. Bose's opinion?  Now I continue to have trouble making a decision on what to do.  Dr. Bose didn't mention the size of my femur head even when I asked in a second e-mail?? Back to the drawing board!

Martha

[Dannywayoflife]

Hmmm Dr Bose was pretty rapid with his assessment for myself. I think it's a combination of bone size and the anteverted femur. The smaller components do have higher wear rates than the larger ones. I've seen Derrick Mcminn talking about altering the placement of the cup to match the anteversion on the femoral side in ladies with dysplasia. Have you watched his videos? Unfortunately I know niether my surgeon (Mr Treacy) or Mr McMinn will do you a online referral or is suggest asking them. Have Gross De Smet and Su got back to you?

[mhiller]

Hi Danny,
I'm waiting on Dr. Gross's comments and Dr. Smet (and Dr. Cox (S.F.)) said that I am a good candidate.
 
I just had my femur head measurement given to me by Dr. Lannin in Palo Alto today and it is right at 44mm.  Dr. Lannin said that next week he will be seeing Dr. Schmalzreid from L.A who said in a phone consultation that I wasn't a good candidate.  Dr. Lannin said that he can discuss my X-rays with him (I'm not sure if that helps because they are the two that are hesitant??).

Dr. Bose answered my initial two e-mails quickly but the only direct personal thing that he said was that I had excellent bone stock.  Even when I asked very directly he neglected to say I was a good or bad candidate??  Probably not a good sign especially when he went on to try and talk about the new DeltaMotion ceramic THR.  I did find out today that to get a good femur head measurement it needs to be done on the hard copy X-ray and not on the computer image which Dr. Bose did not have.

What the heck I'll ask Dr. Su next.  I have three Yes, two No and one questionable.  Maybe Dr. Su will help me make the final decision!
Thanks Danny,
Martha

[Dannywayoflife]

Hmmm wonder why that is? De Smet took a while to get back to me.

[momy16]

Hi DeeDee,

I just read your post and even I don't have dysplasia I agree with you. X rays don't show everything. In my case if you see my x ray it looks perfectly normal but I'm in a lot of pain for most of the time. I had a scope done back in 2010 and it made it worse, nothing changed even the dr said that he cleaned it out I'm still in pain. I'm trying to get another opinion from dr. Su in NYC but my ins won't cover the expenses. I guess I have to pay out of my pocket to go see him.

Thank you!

[mhiller]

Hi Danny,
Dr. Smet got back to me within a day or two and told me that I was a VERY good candidate.  He also said that he thought that Dr. Smalzreid is very cautious now due to the DePuy debacle and that is why he doesn't like to do women with displaysia.
I'm not sure why Dr. Bose is not giving me a straight answer..I'm afraid to ask him a third time.
Thanks Danny,
Martha

[Dannywayoflife]

I suspect De Smet is correct

[Programmer]

Dr. Gross expected problems due to my dysplasia and shallow socket.  He said he expected to have to use a spiked back socket and bone graphs.  Surgery went really well and Dr. Gross was able to use a standard device and correct the dysplasia.  Day 23 and I am now walking with my right foot pointed forward instead of at an angle.

[Dannywayoflife]

Dr. Gross expected problems due to my dysplasia and shallow socket.  He said he expected to have to use a spiked back socket and bone graphs.  Surgery went really well and Dr. Gross was able to use a standard device and correct the dysplasia.  Day 23 and I am now walking with my right foot pointed forward instead of at an angle.

That's awesome congrats!

[mhiller]

That is great to hear Programer!  Was Dr. Gross the first doctor you went to or did you get many opinions?  At this point I think I would feel most comfortable with Dr. Gross but South Carolina seems along way to go from California.
I am glad that your surgery went well!
Martha

[stacky]

Hi Sal and Others

Really great to find a post concerning Dysplasia and resurfacing!

I was diagnosed with Hip dysplasia when I was 10.  I am 25 now and it just seems never ending and like one of your previous posts, very lonely! I have had over 12 surgeries now (including metal removals from TPO's) and am now facing the possibility of a THR on my right side as my metal Ions are high and I have pain as severe as before my resurface.  I have had both my hips resurfaced but only my right is causing me problems still.

It seems from your post Sal that your resurface is doing well. I feel for you with your other hip bucking especially whilst on crutches, I have had that happen before and its very scary.  I hope this isn't happening too often for you?

My left side resurface seems to have worked really well, 1 year post op I had to have part of my Illiac crest removed as it was causing me problems, but now 2 years on it feels really good, strangely beforehand this was always my worst side with the Dysplasia.  I actually couldn't be happier with the outcome of this resurface!

However my right side is just relentless pain, clunking and swelling since November and now my metal levels have come back too high I have been refferred to a new surgeon and for a CT to discuss a THR.  I am so nervous about this though, I am concerned it may not solve the problem but am really at a loss as to what to do next.  They were hoping that resurfaces would work for me as my femurs are a little thin for a THR as they have been broken a few times during other surgeries to correct my dysplasia.  But this looks like my only option on my right side.  Not sure I have the strength to try another surgery, but I also cant carry on in this pain.

I have a lot of faith in the hospital and its surgical team but am losing hope that there will be a light at the end of the tunnel.  This site is brilliant to connect with other people in the same position as me and get information.

I really hope you are all doing well and Sal I hope your other hip gets sorted sooner rather than later! I really do understand the frustration and fear of having to go through it all again for the other side, so soon after a surgery.

Stacy

[Spanielsal]

Hi Stacy, I am so sorry to hear that you have pain and high metal ions in your right side.  how long after HR did that happen?  I've got pain in my resurfacing but no metal ions, it could be referred from my right side, or i could be rejecting it as i'm much more metal allergic now than i used to be.  I'm off to see the surgeon who put the HR in, late in July, so he'll have a good look and i'm hoping he'll fix my right hip but there are no guarantees.

i can totally sympathise with your reluctance for another surgery, it sounds like you have really been through the mill since your diagnosis age 10.  12 surgeries!!! you truly are a bionic woman, Stacy, I guess you have to hope that this time they will fix your pain and give you more mobility, sadly it doesn't sound like you have much choice if you have elevated metal ions.  There are folks going through the same things on this site and elsewhere so you are definitely not alone!  What kind of HR did you get first time round?  How long have you had them? is it just 2 years?  thinking of you, hang in there.

Sal