Bi-Lateral AVN-Just waiting

[Randy]

Hi,
I was diagnosed with AVN in May 2006. At that time I was not even having any hip pain, it was found through an x-ray for another problem. Later I had an MRI and ended up at a major unniversity around 50 miles from my home for treatment.
I take Fossamax on a weekly basis but other than that am just biding my time until I require THP. There are days when I can hardly tell that there is even a problem. Other days it seems to hurt in my pelvic and groin area.
I have noticed something that I think is pretty strange in regards to my pain. Whenever I drink alcohol, in my case beer in an excessive amount (more than 5 or 6 in an evening) it seems to make my hips hurt worse for a day or two. Needless to say this has significantly cut back on my consumption of alcohol, which I am sure is a good thing for lots of reasons. Anyway I just wondered if anyone else has noticed a similair pattern or is it just me?
This setting back and waiting until my pain gets worse is hard and stressful. I guess I am fortunate that at most times it is not that severe yet. I keep hoping that I won't require the surgery but realisticly I doubt that will be the case! Any feedback will be greatly appreciated! Thanks!

 

[katwood]

Hi Randy, I have been diagnosed with bi lateral AVN also. I am starting with my right hip to be replaced on june 12th. It has been a long painful time for me since i was diagnosed. What a shock.I have been going through lots of different feelings about the surgery. I am going thru with it cause I was a very active person and now i can't even go for a walk. The doctors told me that it would be a matter of time for complete collapse and the pain just seems to get worse.They tell me that the pain will be gone and I will be back to my old self soon after the surgery. I will be happy to be rid of the pain.So here goes. I am trying to be brave about this.

 

[Hillstcrew]

You will be 100% glad you had it done.I was also scared.Everybody is.The first week or two are a little rough.I really did not have much pain just stiffness.As the days and weeks go by you will feel a lot better.I am 13 weeks post op and I feel great.Do the PT.It will get you back quickly.Good luck you are making the right desicion.Hang in there the days go by so fast you will look back and say Wow that was not all that bad.I also had AVN.At 42 years.

 

[dids]

As regards the situation with the alcohol, I think the reason may be this; when you get alcohol in your system, it alters the fluid balance in your body and reduces the amount of fluid in places away from vital organs like the liver and kidneys which need it to help get rid of the alcohol. So the joints (kind of) become drier or the joint fluid becomes thicker. It's why you also have a dry mouth and throat. Redistributions of fluids. Least that's how it was explained to me!! Sort of sounds logical anyway!

 

[Randy]

Thanks for the responses! I think that there is at least some comfort in talking to people who are going or have gone through the same thing.
I find that I try to put it out of my mind when I can and stay as busy as possible with work and family things. Its hard to deal with especially if you have been healthy most of your life.
I was wondering and I am sure that it varies but: How long have most of you gone since diagnosis before having severe pain and saying this is enough I need the surgery?
My wife seems to think that I should get it over with but I don't feel that I am at that point yet. How do you know? I don't want to wait so long and then be in terrible pain at the end. They have told me also because I am asthmatic that they would only do one hip at a time.
I wish you all the best of luck! Once again any feedback will be greatly appreciated.

 

[Hillstcrew]

I put up with the pain for about 5 years.Could not take it any more.Knee and back also started to hurt.I knew it was time.Got to the point where I could not wait to get it done.

 

[katwood]

Hi, I started having pain in my right leg after i took a fall. I went to several doctors for the pain and they could not see anything. the pain got worse and worse until they did an MRI and that is when my life changed. i was diagnosed with AVN in both hips. The pain just got gradually worse until i couldn't take it. I was scheduled for a core decompression and two weeks before the surgery I panicked and canceled. I then went for a second opinion and the doc told me why go thru two operations, i would need to have the hips replaced down the road anyway. So I thought about for days and the pain was getting unmanagable. So I decided to be brave and go for it. Surgery will be june 12th @7:30 am i am looking forward to being able to have my life back with out the pain. bu the way..They say that prednosone caused my AVN

 

[dids]

Very likely - steroids do cause such problems with bone structure especially if you're on them for a long time like a year or more.

I'm sure when you've had you hips done you'll 'hit the road running' and wonder why you hesitated. But your second guy was sooo right. I can't think why your first one suggested such a procedure when it is, at best, a interim treatment.

 

[Randy]

I have read a lot of information on AVN as I suppose most people would when it becomes a personal problem. It seems to me in a lot of cases it possibly could be something genetic. Just the way that certain peoples capillaries are something in the make up of their bodies. Steriods and heavy alcohol consumption are almost always listed as increasing your risk. Can you imagine though if that were the true cause how widespread the condition would be. People are alcoholics and take prednisone for years and years yet never develop the desease. By the numbers it is extremely rare, I had never even heard of it until I was told that I had it. I was told by my orthepedic Dr. that it is an area that they don't truly understand yet. He said ( if you want to start a fight in a room full of ortho Dr.s ask them how to treat AVN).
I have wondered at times if somehow I caused this situation that I now have to live with.
At least it is not hopeless, it can be fixed and we all will go on to live the rest of our lives. There is some good that has come from this. It has made me start to think differently about my life, my faith and has changed how I look at things. Life definately is not easy but I believe that we all need to count our blessings!
I wish you all the best and good luck with your struggle in dealing with this desease.

 

[dids]

Well, it might be rare by the numbers but I've met a lot of it during my career. But perhaps that just means that people with it are more likely to come my way! (doh!!)

 

[katwood]

Hi Everyone, thanks For the support, it really means alot to me. I am going to take it easy till I go in on tues morning.I have my family that will be my support when I get out. My walker and comode have been delivered and I have got the house ready. I will check in with you all when I get home. Thanks Again!! katwood