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What the future holds??
Submitted by Takai on 26 April, 2009 - 13:32

Im hoping you could help me with a few things I have been thinking about as I havent had a chance yet to ask my Surgeon these things as I live 2 and a half hours flight away from my Surgeon and usually am mind boggled by the time I see the Surgeon as I see many nurses or medical staff and the latest Surgeon that carried out my Bone Decompression was a different Surgeon from the previous one who replaced my Right Hip as that Surgeon was not well at the time and was on leave.

In September 2008 I had a Total Hip Replacement on my right - not sure if my SLE has contributed my diagnosis of AVN or if it was the 15 years of steriod use???

January 2009 I started to experience pain in my left hip. 

Since then I have had a Bone Core Decompression (5 1/2 weeks ago) and am 4 days away from my 6 week review. 

My Surgeon hasnt advised me yet as to what the future holds for me - all I was advised was after 6 weeks of non weight bearing they will review me and see if the surgery has made any difference and  if so it will buy me time maybe a year or two before I need another hip replacement. 

If this bone decompression hasnt made a difference I am not sure what will happen next. 

Do you think my surgeon will wait until my left hip collapses entirely (my MRI report suggests the head of the femur is slightly collapsed but the marks of AVN on this fermoral head are somewhat more extensive than seen previously on the Right side) or will they preform this replacement now???

I still experience moderate pain daily however I find some days are good and other days are bad so I am not sure if this surgery has made a difference. 

I have just gone back to work part time as I find sitting for long periods is contributing to my pain.  Do you think it is wise for me to be back in the work force?

Are there any other type of treatment that may assist me before having to have another hip replacement?? Like medication or something?? At present I am just on a low dose of steriods, some immunosupressents, cholesterol & heart tablets? 

I feel like I am running out of options.

Until I get back from my appointment.

Take Care and keep up the great job....

 

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  Takai,   I am sorry to hear

Submitted by joel on 29 April, 2009 - 16:22.

 

Takai,
 
I am sorry to hear you are still in the middle of your trials. You have asked some of the same questions that many avascular necrosis patients do. Still, there are not so many easy answers. I am happy to be a sounding board and share my feedback though..
 
In regards to the core decompression, the main goal of this procedure is to improve pain and hopefully extend the use of your original bones before replacement. I hear your surgery site is still painful. However, it is perfectly normal to still be experiencing pain just 6 weeks post surgery. Actually, I did not really start to fully recovery from my core decompression surgery until about 10 weeks post surgery! I would suggest that you try to keep positive, give it a little more time, and hopefully your pain will continue to improve.
 
In regards to when the surgeon might operate, that is a very tough question. The answer, I am afraid, depends on your surgeon's personal viewpoints really. Some surgeons are more aggressive and tend to operate quickly while other surgeons are more conservative and wait for full and total bone collapse. My best advice here is to get multiple opinions on your case and compare doctor viewpoints.
 
To answer your other question, “Are there any other type of treatment that may assist me before having to have another hip replacement?”. Yes, there is some very new research taking place that might be able to help. This new procedure is called, “free vascularized bone grafting”. Actually, our organization has just completed an interview with one of the leading researchers into this area and we have already written a draft of an article talking about it. The article will be published in about a week. If this topic seems helpful, I would be happy to help obtain any information about this topic your doctors might like.
 
The main issue with avascular necrosis is that when the bone dies, it kills off the cells needed for bone regeneration too. This is why simply restoring blood supply won't cure the disease alone. Alternatively, stimulating the regenerative cells (osteoblasts) without correcting the blood supply won't cure the disease either. Yes, there are some internet web sites claiming drugs that can cure AVN. However, we are not aware of any clinical research proving any of those medications as effective. To date, vascularized bone grafting is the only procedure I have seen hard data confirming it to be effective at actually reversing avascular necrosis.
 
I wish we had more information to share that would help. However, the best most patients with avascular necrosis can hope for is to try to stay comfortable and to try and prolong the joint area as much as possible.
 
In regards to your question about going back to work, that is a tough one too. As a responsible person, most of us feel the desire to be productive members of society and wish nothing more than to work. However, avascular necrosis is so violent and unpredictable that working is often impossible for many patients suffering severe AVN. On the plus side, your core decompression may reduce your pain level once it heals. Thus, my suggestion is to hang on a little bit and see how you do in another few weeks. My hope is that you will feel an improvement that might make the decision to work or not easier to decide.
 
Good luck, I wish you well, and keep us posted!

 

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The Future and Options

Submitted by barbara on 27 April, 2009 - 10:22.

Takai, it sounds like you have a lot of things to think about and make decisions about! I have AVN (knee), and I have also experienced times of feeling frustrated and conflicted about decisions I have had to make regarding treatment and coping with this complex and painful disease. I ask my doctor a lot of questions whenever I am uncertain or confused about something. I believe that it is part of his job to explain to me about my options, to give me his educated opinion about treatments and medication, and to advise me in the decision-making process. During one visit with my doctor, I quizzed him about some AVN "facts" to try to find out how knowledgeable he was about AVN. He was very good-natured about taking my "quiz" as he recited detailed answers to my questions. I am not suggesting that anyone else should do this--some doctors might not respond as positively in a similar situation--but I was reassured by my doctor's attitude and by the fact that he gave all correct answers. It sounds to me that many of your concerns and questions need to be communicated to your doctor as soon as possible. If you are uncertain about his answers, remember that you have the option of getting a second opinion from a different doctor.

You said that you had used steroid medications for 15 years and that you are currently taking them. Perhaps you have already discussed this with your doctor and are comfortable with his reply relating to your personal situation. However, I wanted to mention that the issue of AVN and the use of steroids is addressed in the "AVN FAQ" section of this site. In part, it relates that steroid medications are thought to be one of the main causes of AVN. Also, if you have not already read, "Joel's Avascular Necrosis Story" in the "Forum" section of this site, I would encourage you to do so. His "Story" may give you some information and/or insight regarding the difficult time you are experiencing.

Good luck and I hope you give us an update.

 

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barbara

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