Can't beleive this is going on...

[Kal]

Hello all.  My first posting here and actually just reviewed this website over the weekend as I move forward to get my hip problem solved.  First of all I must commend Pat for putting such an informative website together...I have yet to find anything comparable and as of yesterday evening ceased searching.

My hip(s) started bothering me during a trip to Europe in summer of 2007 - eventually went away untreated then came back with intense pain in my right hip during a trip to Las Vegas in Feb 2008.  Enough pain to warrant a visit to urgent care when I returned, which eventually landed in an ortho surgeon office - xrays, catscan & mri later I'm advised that my right hip has AVN, which may require replacement.  I don't have a regular physician - one of those guys that doesn't go to doctors unless absolutely necessary.  As a fairly active 47 year old male in reasonable shape, a few extra pounds but not obese, work out regularly, watch my diet, etc. etc....I am grappling with the thought of traditional replacement so I looked into the resurfacing, which initially my doctor thought would be a possibility but she called me today and said that after consulting with a surgeon who has performed BHR who advised that my condition is severe on the right hip and moderately severe on left hip and will not withstand the BHR procedure.

After spending the entire weekend educating myself and listing possible surgeons to complete this, you can just imagine how I felt after receiving the phone call this afternoon.  So, needless to say, I picked up the five CD's I requested radiology to produce for me and am now getting ready to send out emails this evening to the surgeons and then fed exing out the discs in the morning.

So, my question is...has anyone else been told that they do not qualify for resurfacing by one surgeon and then told by others that I am a candidate?  After reading the stories, research, etc. I don't plan on waiting to get this corrected one way or the other - preferably resurfacing. 

Any input would be greatly appreciated.

Kal

[Vicky]

Hi Kal,

I think the question really needs to be, has anyone been told they were a candidate by the first doctor they saw?  :-)  I was told by three orthos that I should get a THR, they never even brought up the fact that resurfacing even existed.  The third ortho, I specifically went to because my insurance company told me he did resurfacing.  He did not do full resurfacing, only hemi and then went on to lie to me and tell me that I wasn't a candidate anyway due to having dysplasia.  Kal your best bet would be to go to Dr. Vijay Bose in India, he is really the world expert on AVN cases and has successfully resurfaced over 400 AVN cases alone, he has well over 1000 resurfacings total now.  If anyone can resurface an AVN case, he is the man.

Vicky

[Kal]

Vicky,

Thanks for the reply.

The ortho I saw is qualified to resurface but has never actually completed one yet so she referred to someone that has done these procedures who in turn gave her the negative response....

So, did you go to India? 

[Vicky]

Yes I did and my sister's best friend who also has AVN is scheduled to go to Dr. Bose in early May.  The doctors here wanted to give her a THR, she is only 43 years old, Dr. Bose gave her an 80% chance of getting resurfaced.  There is an India surface hippy site if you want to read about other patients that were very happy going to Dr. Bose. 

http://health.groups.yahoo.com/group/indiaresurfacinghippies/

Also did you know that both Cory Foulk, (the triathlete that has competed in five Ironmans since his hip resurfacing and two Ultraman competitions, he also went to Dr. Bose) and Floyd Landis had AVN and Floyd was successfully resurfaced by Ronan Treacy and another doc in the Southern California area.

Vicky

[Pat Walter]

Hi Kal

Yes, many people have to go to several doctors to get what they want. Until you have talked with the most experienced hip resurfacing surgeons in the world, don't be discouraged.  I went to 4 orthos that cost me $200 each and was told I needed an old fashioned small ball plastic/metal thr.  Then I found the Yahoo Discussion Group and started to learn where the experienced hip resurfacing surgeons were.

Sometimes even the best will turn people down.  Sometimes De Smet says No, Bose will say yes.  Bose will say no, De Smet will say no and Gross will say yes. Or a few of the other really experienced surgeons will say yes.

Many of us had to travel long distances to get what we wanted.  We keep looking until there was no other doctor to talk to.

Many of the inexperienced US surgeons will often turn people down because they are not ready to do resurfacing in complex or difficult situations.  They just suggest a THR to be on the safe side.  That doesn't mean that one of the experienced surgeons won't give you a great hip resurfacing.

Look at my list  http://www.surfacehippy.info/listofdoctors.php  and see what exprienced surgeon is close to you.

I went to Belgium to Dr. De Smet because I was an older female at 61 with a loss of bone density.  I did not have health insurance so could not afford surgery in the US.  Even if I had insurance, I still would have choosen De Smet with over 3000 hip resurfacings. 

Many people choose Dr. Gross in SC because he has a lot of experience. There are a handful of US surgeons with 500 - 1000 hip resurfacing surgeries.  The overseas doctors have much more since they have been doing it since 1997.

Many others like Vicky have choosen Dr. Bose of India.

Send out your emails and talk the the experienced surgeons, you will get a feel for where you think you want to go.

Good luck and stay in touch.

Pat

[Kal]

Thanks for the info Pat.  You have a great website here providing very valuable information for anyone having to go through this.

I sent out CD to 4 different surgeons - all listed on your website and will now await what they say.  Again, the local ortho referred me to someone in San Francisco who supposedly does the resurfacing but you know Pat I can't even locate him on the net.  Googled several times - name comes up but nothing specific to BHR.  So, I guess that makes me a little more confident as I move forward. 

You mentioned De Smet completed yours and you have been very happy thus far.  He is one of the four I sent out to so hope to hear back soon.   I will keep you updated and bit of the wealth of knowledge you have in regards to this problem would be much appreciated.   

Kal

[Pat Walter]

That is a bit of a problem with the US surgeons. THere is so little information about them. Unless they post it on their website or give it to a patient, you just don't know much.

There are many new hip resurfacing surgeons.  Many write to me to be on my list.  I do try hard to only put surgeons with 50-100 on the list.  THere are a handful with less because their patients are so happy with them they wanted them posted.  I went ahead and did that.

I have had some write to me to be put on the list that have only been trained and not even done any yet!  These surgeons will get plently of patients for their "practice"  but it doesn't have to be anyone that takes time to learn about hip resurfacing and checks out the major sources like my website and the Yahoo Surface Hippy Group.

The revision rate is only 4%, so that's not bad odds even with the newbies - but why take a chance.  So many of the less experienced surgeons will often just switch to a THR if there are any problems.

Dr. De Smet is one of the best in the world. He has done over 3000 hip resurfacings.  I would have choosen him even if I had insurance.  Dr. Bose, Gross and a handful of the other really experinced surgeons are also fantastic too.

Pretty soon as time goes on, we will get some really experienced BHR surgeons in the US.  We have Dr. Rogerson who has done over 250 and Dr. Clarke that has done over 500 since he moved here from overseas.  In another year, the list will be expanding of the really experienced BHR surgeons.  That will be good.

Dr. De Smet and Dr. Bose predict many hip resurfacing surgeons will fall by the wayside.  The surgery if difficult and it takes a great deal of skill.  Some surgeons are not up to it and others don't want to keep doing such difficult surgeries.  Some are already having a handful of problems with their patients.  That is why the revision rate has increased in the last year since the FDA approved the BHR in the US.

Good Luck.

Pat

[DAN]

Hey my name is Dan i read your email don't worry keep looking for a doctor that will do the resurfacing on you, myself i'm 35 yrs old and have perthes calve, my doctor told me that i have osteoarthritis in my hip so he wants to give me a thr, he also said that he could try to give me brh but i might wake up with the total replacement,i'm seeking a second opinion and i'm trying a product from china called osteoking that apparently reverses avn and osteoarthritis, a lady i talked to (testimonial) told me she had a hip problem without saying what i had she told me she had perthes and it reversed her condition, she was walking with a cane and was scheduled for thr.I think this product is worth a try what do we have to lose right. I'm not a doctor by any means but i do look into homepath solutions, to me doctors don't always know everything.

[Kal]

Funny you mention this Dan.  I found Osteoking online as well and was ready to order it but according to my doctor the damage she beleives to be "severe" and caused by AVN doesn't qualify for resurfacing but recommended a thr.  Now, since I have sent my data to a few doctors I will wait to see what they say and if positive get back to looking at this medicine.  In fact, actually I will purchase it as my left hip is also a problem but according to my doctor is at a "moderate" stage so maybe this can be reversed and avoid thr or resurfacing in the future?  My right hip has a small depression so not so sure it will grow back.  Anyway - thanks for the reply and if you can ship your xray/mri or anything else you have overseas to the doctors that have performed thousands - we don't need to give these locals practice right?  Sending package through DHL costs about $50 and can reach most European countries in two business days.  Talk to you later and good luck.

[Pat Walter]

Hi
If you want to consult with some of the overseas doctors like De Smet, Bose, McMinn, Treacy - you can normally send them emails.  You can also attach your x-rays in a digital format.  Either get them digitally or take digital photos of them.  That's what I did.  Either hold them up to the light box in the doctors office and take photos - or hold them up to a window in your house.  Best if the sun is not shinning in.  If it is too bright - put a pice of paper behind them.

Doctors like De Smet don't normally need MRIs, they read bone density from the x-ray - they are different than the US doctors.

Just thought I would let people know you normally don't have to ship x-rays overseas - send an email.  The doctors will talk with you via email and answer all your questions.

Pat

[Kal]

Well, that's great to know Pat.  I had such difficulty just getting the disc, when I did get it I simply shipped it out.  I attempted to email but the files were so extensive and they used some program called "amica" that just made it impossible to attach to an email.  In fact I further went back to get just the MRI on disc as well as try to get them to email the file to me so that I can forward on but it was against their policy.  Strange how they can give me multiple discs but can't email them to me...  I'll tell you  my faith in the U.S. health system has been dropping by the day since I started on this process!  Anyway, I can't say that everyone is like this but it is disappointing to say the least.

Kal

[james]

In my humble opinion I can't see why anyone would have anything to do with the "u.s. health care system."

[Kal]

Just received email this morning from Dr. De Smet who says that I qualify for resurfacing!   What a great way to start the day!  I have a couple more responses that will be forthcoming, which I will wait for but in the meantime it feels great to have some good news for a change.

In fact, this has energized me to the point of being able to focus on work, personal and other aspects of life in general, which were placed somewhat on hold after getting the diagnosis of AVN and recommendation of thr...

Once I get the other opinions then I'll make a choice and move forward.  Anyone out there going through this now, all I have to say is hang in there and get more opinions!

Kal

[DAN]

Myself i will try the osteoking it just arrived today what do i got to lose right. My hip has white spots on it and my gp told me that it was osteoarthritis, i will try it for three months and then i will seek a second opinion like pat said i will think hardly about dr bose if my doctors here in Calgary wish not to do a resurfacing on me! It sucks to onlly be 35 yrs old and hace to quit playing hockey, but i stil can weightlift and go biking that seems to help me. I do some physio to strenghten my abductor muscles so i can function and strenghten my hip. My physiotherapist saw my xray he said that i have another 20 years on that hip, unfortuntly he's no specialist!!!

[Kal]

I don't blame you for trying osteoking as I intend to use this as well for my left hip but my right hip already has a depression on it and I'm not convince dead bone will re-grow and fill in this hole...  I feel for your situation brother - I am not happy being 47 so can just imagine how you feel.  But, on the positive side you are doing what you have to do and not giving up on this thing so power to you on any which way you decide to tackle it.  I'll keep you informed on my progress and if there is anything I can send your way that may help I will (not that I'm anywhere near an expert)...

[DAN]

For sure let me now how things are going i will give you an update on my supplement and or if i need to seek a second opninion. I truly want the resurfacing, but my doctor her in Calgary wants to give me a thr, he can kiss my you know what. Having perthes really sucks it has affected me all my life since i got this curse at age 5, none of my two brothers have it lucky me. My hip itself looks kind of like a mushroom its wide and kind of like a half moon shape, i have a white spot on my hip which is bone on bone, i had an xray done when i was 25 it sure didn't look like that.So cartilage is gone!!!!!!!!!

[Kal]

So, I'm getting  responses back & they all seem to vary...   considering them all though.  Came across interesting new procedure for the treatment of AVN - click the link below:

http://www.allbusiness.com/health-care/medical-practice-orthopedics/5317978-1.html

[DAN]

Hey Kal how are things, myself i don't know if you remember but i told you that i was going to try this supplement called Osteoking, well i have been on it for 2 months now, i have some very good news. my hip pains and refered knee pains have disapeared, i'm able to walk with no pain whatsoever, my hip right now gets tired when i walk for long periods of time but i think this product is making me better every day, i need to take it for three months of course, the terrible pain that i ahd has disappeared. my hip grinding is very minimal as well, my surgeon said that i was bone on bone of course, i find that my confidence is returning as i'm not thinking of it as much as my pain has diminished. I don't want to give you false hopes but for me surgery is the last option as you know my doctor was suggesting a total hip replacement with a ceramic ball. For me having perthes at 5 and having to miss out on alot of chilhood things makes me not to go through a major surgery at 35, this thing will not beat me again, sorry thats how i feel.

[Pat Walter]

Hi Dan

I hope your supplement will help.  Many of us have taken Glucosimine and other supplements to help.  If it works, that is great.  Sometimes our emotions and thoughts can be of a great help too.

You also have the choice of trying a steroid shot or 2 into the hip capsule when your pain returns. 

I also found if I went to the chiropractor and kept everything in line - my hip did not hurt as much.  Bad hips make your body out of balance.

There are many things to try before you go to surgery.

If you do need surgery in the future, I would use one of the very experienced surgeons that are use to dealing with perthes.  There have been some very young people with similar problems that now have hip resurfacings. Some were only 12 and 14 years old.  They were at a point they could not even walk and now they are participating in school sports.

Kaibree is one of the young ladies  http://www.surfacehippy.info/kaibree2006.php

I just mention the younger people that have had hip resurfacing so you don't accept a THR without consulting some experienced surgeons - if you want a hip resurfacing. You are very young to be considering THRs.

Check out some of these really difficult hips that have been resurfaced - you need a really experienced surgeon to pull it off, but it can be done.  http://www.surfacehippy.info/unusualhipresurfaces.php

I know you must be conisdering hip resurfacing or you would not be posting here.

I wish you the best of luck. We have all gone down the road you are on and tried everything we could.  I guess until they can grow cartilege in humans, we are still stuck with hip resurfacing.  They do a good job of that in horses and now dogs. So maybe they will learn how to do it in humans too.

Good Luck.

Pat

[Kal]

I am no expert but I could not have said it any better Pat.  In fact after I scheduled my surgery and up to today my hips are hurting less - do I have more mobility NO...  So, it is strange yet true that mental process does play a role in dealing with this problem. Yet it is not a cure, which is where I beleive in my experience is where I have to draw the line. I certainly don't want to live the rest of my life walking gingerly around trying to avoid making that awkward step, bumping my foot against that corner of whatever obstacle that may be in the way of my walk, etc. etc. and experience the pain that we all know occurs.  So, ever heard "no pain no gain"... Sacrifice must be made to overcome the pain we all know will never completely subside.  My right hip already has minor femoral collapse which will not heal so I have to do what I have to do to try to get back to a normal life and after thorough research - resurfacing is as Mr. Treacy would say "option 1"... the hope is that it last long enough to where there won't ever be a need to revisit this, but if necessary I can opt for option 2 whatever that may be at the time.  I am a firm believer that it does not make sense to go to the last option of THR at this time.   Dan, I wish you luck and I hope that this medicine works for you so as to avoid any type of surgery but if you decide to move toward a different option contact Mr. Treacy and see what he can do for you.