Hip Resurfacing in Pre-Collapse (painful) AVN

[tennis07]

Hi Everyone! So I'm new to Surface Hippies but an avid poster on the Osteonecrosis Yahoo support group! But it seem's I've hit a snag and would appreciate any advice that you all may have for me.

Background: I'm a 20 year old guy that has been dealing with chronic health issues since the age of 12. I have Interstitial Lung disease, RA, Sjogren's, Common Variable Immunodeficiency, Asthma, Avascular necrosis in both femoral heads and both distal femurs and poximal tibias! From the ages of 12-17 I was on daily prednisone/solumedrol use (never got below 40 mgs/day). Then my lungs were near the point of Lung transplant that we had to use Pulse Solumedrol which consists of 3000mg of Solumedrol (which is 4 times stronger than Pred) for 3 days every Month...so yes..9000MG of solumedrol every month! Crazy I know..Oh and the best part was that nobody ever warned be that this could happen! Now I'm on Methotrexate, TNF inhibitors, Plaquenil, IVIG, and inhaled steroids and some solumedrol.
My latest surgery was in June of 09 when I had Core Decompressions with stem cells from illiac crest in my right femoral head (stage 1 barely symptomatic), distal femur and proximal tibia. Within weeks I was pain free and all was well! And my lungs were even doing better with my new medication switches! Then, the weather started to change and I had a BAD flareup of my lung disease. So we ended up doing a Pulse of Solumedrol 500mg (equiv of 2000mg pred) and then an increase in inhaled steroids. A few weeks later I woke up with Excruciating pain in my right hip..I couldn't put any weight on it at all...it was bad! The thing is that my AVN in the right side was just at stage 1 when we did the CD's. But since then there is a constant ache in my right hip/groin which gets really bad when I am weight bearing. My left hip has started to hurt worse as well. I'm on Fentanyl, Oxycontin, Flexeril, and Percocet.I can't attend school because sitting reaks havoc on my hips and I've tried online courses and my grades have suffered..again still due to pain and pain meds..And grades matter since I want to go to Law School! Most importantly..I just want to live!!!

My MRI/xrays shows progression from stage 1 to stage 2 but the leasion isn't huge and hasn't collapsed! BUT, there is visible sclerotic changes, small cysts, and early degenerative arthritis on the xrays AND my docs say due to my inevitable use of steroids and my progressive/agressive RA, they say that a THR OR HR is inevitable within the next year or so. The thing is, some docs i've talked to want me to wait until it collapses...but others say to operate so that I can live! Of course I'm leaning towards living but the other issue is that they say that there are pros and cons for Hip Resurfacing and Hip replacement..and of course they want me to choose!!

So, my question to everyone is if they have heard of people who had Hip Resurfacing on Pre-collapse AVN? If so have any of you experienced AVN pain after Hip Resurfacing?

I appreciate ANY advice people may have for me! I'm just getting very tired and very frustrated and want to action! But a smart researched action! 

-Jacob (My personal Email is Jacobneku@yahoo.com) 

[Pat Walter]

Hi Jacob

Welcome to Hip Talk.  You are very young and I am glad you found out about hip resurfacing.  I am very sorry to hear about your medical problems.  Many medications and health problems can also cause AVN.

THere are many people that have had resurfacing for AVN.  Dr. Bose of India, who is one of the best hr surgeons in the world, does many AVN cases which is about 1/2 of his practice I believe.  He is very good about giving free consultations via email. Since he is one of the most expeirnced hip resurfacing surgeons and expert on AVN, I would suggest you write him an email and attach a copy of your x-rays in a digital format as a .jpg    You can convert your digital to jpg or shot a digital photo of your actual x-rays.  He will give you a free consultation and give you good insight about your AVN and the stage it is at and when he suggest hip resurfacing.

I don't know what surgeons you are working with, but unless they are the top few in the world - I would listen to them, but make sure you get input from the top hip resurfacing surgeons.  Dr. De Smet in Belgium will also give you a free email consultation as well as Dr. Gross of SC. 

I would make sure I have a lot of input from the best hr surgeons in the world.  YOu can't rely on our responses or doctors that don't do many hip resurfacings for AVN.  You need correct information from the surgoens who know about AVN and resurfacing.  If resurfacing is not done at the right stage of AVN, you could have your hip resurfacing fail from AVN.  This is a serious condition and the doctors need to understand it's progression. Here is an older response from Dr. Bose, he has done many more by now http://www.surfacehippy.info/faqavn.php   http://www.surfacehippy.info/faqdiagnoseavn.php

You are so young and I know your condition needs to be at the right stage to have a successful hip resurfacing.  Please consider getting input from the surgeons above.

I know we have AVN patients on this group and hopefully, they will talk with you.  We will definitely give you support and answer any other questions. You definitely need support group to listen.

Here is the list with the above doctors contact info

http://www.surfacehippy.info/listofdoctors.php#Doctors_with_over_1000_Hip_Resurfacings_

Good Luck and stay in touch.

Pat

[tennis07]

Thank You Pat for responding!

I definitely have spoken to many top surgeon's and have emailed Dr. De Smet as well. The main issue that is coming up is that NOBODY definitively knows the progression of AVN in each person. There are some surgeons that say that if you take out the leasion while you resurface it in stage 2 then you have in essence taken out the AVN. Others such as Dr. Bose believe that AVN will continue to progress until the femoral head collapses.
Due to the fact that there has not been studies that provide evidence for one theory or the other, I'm trying to research as much as possible myself so that I can be as informed as possible. I have seen the studies that say that Hip Resurfacing holds up very well for collapsed femoral heads, but No studies showing how non-collapsed femoral head hip resurfacing hold up.
Since i'm only 20, buying time and letting technology better itself for a hip replacement with a hip resurfacing would be incredible. But at the same time, it is extremely important that a couple months down the road I don't start to develop my AVN pain again and have to do the hip replacement anyways!
Once I have Dr. De Smet's response I will definitely be sure to post back what he says! That you very much Pat for all the advice1 :-)

-Jacob