Wild ride to AVN in both hips... what to expect?

[feelinIt]

Hey everyone,

I've just had a confirmation of AVN in both hips and was just referred to Dr. Allan Gross at Mt. Sinai in Toronto. I've been reading everything I can about the condition but I haven't found much on personal experiences.

What I have found is that pre-bone collapse I'm probably a good candidate for femoral head decompression.

History: Male 34, diagnosed with MS when I was 22 (stable/RMRS). I just finished radiation therapy for testicular cancer that had spread to the lymph nodes in my abdomen (Feb). The follow-up CT scan showed some lucent lesions in the femoral head and I was sent to have an MRI (last Friday). This morning my GP called and confirmed it is AVN in both hips. I don't have a copy of the actual report yet but the area in my left hip is 18mmx15mmx11mm and the right hip is a little smaller.

Has anyone here had any experience with the decompression and what to expect for a realistic recovery?

Do you think they would do both at the same time?

Are there non-operative procedures with high success rates that I should be reading up on?

I'm a carpenter and I'm active. I just did a ¼ marathon yesterday trying to get back into running after finishing the cancer thing. I was told this morning that I shouldn't run any more and take it easy and avoid any sudden impacts on the hips. Is this as risky as it sounds? I feel like I'm walking around with glass legs now.

 

[jaydub63]

@feelinIt I haven't had that procedure, but if you go over to the Hip Recovery forum you can find threads of other forum members who have. Scroll down to the bottom of the list to where it says "thread display options" and in the "prefix" area, select "core decompression" from the drop down menu. That will filter the threads to bring up the members who have had that procedure and you can read about their experiences and correspond with them.

Sounds like you've had a rough time - you'll find support here and lots of folks willing to answer questions.

 

[Josephine]

Hi Jazz1963 and welcome to BoneSmart!

What I have found is that pre-bone collapse I'm probably a good candidate for femoral head decompression.

Well I'd be careful if I were you. Core decompression isn't that successful and frequently requires conversion to a total hip replacement. You can find a few threads on the Recovery Forum that have the prefix "Core Decompression" which would give you some first hand information. Just click on any prefix and it will give you a search of ALL threads with that prefix.

Do you think they would do both at the same time?

Some people have had a bilateral surgery done.

Has anyone here had any experience with the decompression and what to expect for a realistic recovery?

Very often surgeons tell their patients that recovery is a breeze and they will be ready for normal life in no time at all. The reality is a little different. Often as not, the recovery is pain and protracted as you will see in those threads. Even more often, the procedure still ends up being converted to total hip replacement. But don't let that worry you on the age front as we've had numerous members in their 20s and even younger have THRs.

Are there non-operative procedures with high success rates that I should be reading up on?

None that I know of. Once the femoral head is dead, it's dead.

I was told this morning that I shouldn't run any more and take it easy and avoid any sudden impacts on the hips. Is this as risky as it sounds?

Yes it is. It canbe a very painful and debilitating experience to have a femoral head collapse. I'll get one of our mods to come and talk to you - she had this experience.

Core Decompression of the hip

 

[Jaycey]

@feelinIt Welcome to BoneSmart! Having ignored all the pain in my hip for years (thinking it was spine related) I woke up one morning and literally could not put any weight on my left side. I stupidly continued to go to the gym thinking I was just out of shape. NOT! My GP referred me to an orthopaedic surgeon who took one look at the x-ray and asked how on earth was I still walking around without any crutches. My hip had collapsed. Believe me, you do not want to experience this pain! I had to limp around for 6 months before my surgery and there are no pain killers that will touch this pain.

I would encourage you to baby that hip as much as you can until you have surgery. Impact to the hip as well has any heavy lifting can indeed cause more damage.

Do read the threads from our members who have had CD. You may want to discuss going direct to THR with your surgeon.

 

[Josephine]

Oh @Jaycey! I quite forgot to add your tag to my post! I'm so glad you stopped by.

 

[feelinIt]

Thanks for all the replies, work has been nuts this week and I haven't had a chance to even look at the forums. I'm going to spend some time tonight in the recovery forum that was mentioned.

I've cancelled some roofing jobs this week trying to be proactive with the "babying" but I'm not very good at taking it easy. Especially since I've been taking it easy for the last year with everything else going on.

I haven't read anything yet, but the comment from @Jaycey about going straight to THR scares me... I feel like I should keep the hips I was born with before getting a replacement. I'm probably being naive but can I still run/yoga/work and live normally with fake hips? I read something about THR and you're not even supposed to forward bend more than 90 degrees.. Maybe it was an old article or I could be getting ahead of myself but losing the ability to be so physically active scares the hell out of me.

EDIT: I have to add, when I had my testicle removed I had some random pulmonary edema that put me in ICU for 3 days and subsequently ran through every heart test available which all came back inconclusive except the idea that it was caused by the anesthetic. Going back into surgery makes me feel like a fish in a barrel.

 

[Sbrummer]

I have bilateral AVN and had an advanced core decompression on my left hip on 2/19. It was going well until it wasn’t. My success lasted 4 weeks. I’m now scheduled to have my left hip replaced 6/18. We haven’t done anything to my right hip because it doesn’t hurt yet. Neither femoral head has collapsed. We all really hoped that the decompression would work since the femoral head hadn’t collapsed.

I’m available to talk with you further if you’d like. I’m on restriction from everything until my surgery.

 

[Sbrummer]

@feelinIt Believe me, you do not want to experience this pain! I had to limp around for 6 months before my surgery and there are no pain killers that will touch this pain.

There truly is no medicine that will ease the pain of having your bones rot inside of you. There are literally no word to express the deep, horrible ache. I now regret the core decompression and wish I had listened to the advice on this forum. I really should’ve just done the hip replacement and gotten it over with. Now I am in more pain than I was before the CD. I call my surgeon’s office every day to see if someone has canceled their surgery so I can have mine done sooner.

 

[Sbrummer]

Sorry, but one more thing - I have SEVERE asthma. It’s a huge risk to put me under anesthesia for any reason whatsoever. In 2016, my lungs failed and I nearly died. I was fully septic, had pneumonia, and parainfluenza virus III. I was in the ICU for 15 days and was on life support for 5 days. When I woke up, I was told repeatedly that I should be dead. The doctor’s told me every time they saw me that they couldn’t understand how I was still alive.

All that to say, lung issues are scary. Do you have any other specialty doctors? I have a cardiologist, a pulmonologist, an allergy/immunologist, and a rheumatologist. I was thoroughly checked for the first surgery and I’ll have to get checked again. I’m sure they’ll verify your lungs can handle the surgery.

My husband likes it when I’m breathing. I kind of like breathing. I guess you could say it’s on my top ten favorite things to do. (That part was just to make you smile)

 

[feelinIt]

@Sbrummer, thanks for the humour. I had a neurologist but he just retired, I only see him every couple years anyway. I had a cardiologist but the last thing he said to me was "I'm afraid it will forever be a mystery".

I enjoy breathing as well, if I had a list of top ten things I enjoy, breathing would certainly be among the ranks.

 

[Sbrummer]

Glad I could make you smile during such a difficult time

 

[Mojo333]

I feel like I should keep the hips I was born with before getting a replacement. I'm probably being naive but can I still run/yoga/work and live normally with fake hips? I read something about THR and you're not even supposed to forward bend more than 90 degrees..

I had bilateral hip replacement and the only restrictions I have are the ones I put on myself.
My one year anniversary was this month and I am healthier and happier than I have been in years.
I've always been fairly fit and very active...until my back and hips started acting up and they told me my hips were shot with OA.
I would've liked my original hips to have held up, but have never regretted my surgery.

 

[feelinIt]

My appointment is tomorrow with Dr. Alan Gross at Mt Sinai in Toronto. I think I'm loaded with everything I need to know but I'm having second thoughts about having anything done. Like I should just leave it and deal with it later when the bone collapses (or if it even collapses). I suppose that I'm in a bit of denial at the moment and the fact that I'm not in much pain, leaves me to believe that it won't get worse.

My question is if the AVN was caused by prednisone during the MS relapses, will it get worse if I just leave it alone and avoid the use of steroids going forward?

 

[Josephine]

I'm having second thoughts about having anything done. I suppose that I'm in a bit of denial at the moment and the fact that I'm not in much pain, leaves me to believe that it won't get worse.

Oh yes, it will get worse! I can promise you that. So get it done before that happens.

 

[feelinIt]

Well the surgeon felt the same way. The areas in the bone are small enough and I have hardly any symptoms or pain so he wants to wait a year and see if anything changes. My only restriction is that I have quit running so I guess I'll start cycling instead. Probably won't see me around here for a year. It was a great place to vent.

Thanks everyone who took the time to reply

 

[Eman85]

You asked about restrictions. When you first have it done with some approaches and some surgeons there is no bending past 90*, no crossing legs and no pivoting on the op leg. Once past 6 weeks my OS told me DON'T FALL!
I never thought twice about doing anything with my original hips, what's the worse that could happen? a hip replacement? With this new stuff in me I'm pretty aware about what I'm doing and not falling.