AVN and Fosamax???

[bobh7107]

I was recently diagnosed with Bi-lateral AVN. The pain in my right hip is severe. I have been having trouble getting to and from work, and even lifting my leg 6 inches to get into my car is an issue. My primary doctor told me I needed surgery, and I was relieved to finally be seeing an orthopedic surgeon today.

The surgeon told me to geet on crutches and take FOSAMX for 4 weeks and then come back and see him. Is this normal? How much bone regrowth can I expect in 4 weeks, and how do I know if any relief is from the crutches or the medicine? I am afraid that I may just be delaying the inevitable.

Another BIG concern is that the Fosamax has a warning about not taking if you have or had throat issues. I had a swelling of my eppiglottis a few years back that nearly killed me. the repeated steroids to cure me CAUSED the AVN. Yet even after I told all this to the surgeon, he prescribed the Fosamax anyway.

Is Fosamax considered a cure, or a delay?

Thx

 

[dids]

Did your doctors explain to you WHY you had epiglottitis? It is usually caused by a viral infection which has no relation to the contraindications the literature is referring to.

I found this website in a search https://www.merck.com/product/usa/pi_circulars/f/fosamax/fosamax_plus_d_ppi.pdf

which tells me that the commonest problem is gastric reflux - therefore taking the gl*** of water and not lying down for 30 mins. I wouldn't think that your episode with epiglottitis would be a problem here as it is usually a one off ailment like a cold or a sore throat. However, I suggest that you go talk to your regular doctor and get him to re***ure you and/or offer you some advice.

 

[bobh7107]

Thanks. I have contacted my ENT for advice. My Epiglotitus almost killed me and I kept relapsing on and off for several months (every time they took me off the steroids). The belief is that those steroids gave me the AVN, so there is a wierd circle of events. The never found the cause and were basically treating me blind with everything they could throw at me.

I have no problem taking Fosamax if the Dr. says it's ok, but I have read that this is more of a delay vs. a reversal. I am not positive on the success rate and have read about cl*** action suits and Jawbone death and such, so it is a bit scary.

I have also heard that core decompression is more for the early stages (1&2) of AVN. I am in stage 3.

I am going for a second opinion on Friday. I have even scheduled a 3rd opinion in mid July.

Any additional insight would be greatly appreciated.

thx

 

[dids]

I think that conditions like that - anything in the throat - are really scary. I had a similar problem myself once, kept getting a condition called laryngo-spasm where basically, the cords would go into spasm so I couldn't breathe in. It was really horrible and frightening but they never found the cause. Happily it would only last a few seconds - a minute at the longest - but was enough to make me go purple in the face!

So your further information leaves me unable to help further. It would seem your ENT bod will be the best to advise you.

I never saw that connection with osteonecrosis of the jawbone before so thank you for bringing it to my attention.

Keep us posted on the results of your consultations and we wish you well.

 

[Randy]

HI,
I was diagnosed around 13 months ago with bi-lateral AVN. Immediatley I was put on Fossamax and given a copy of a study that was done on patients in all different stages of AVN. The Fossamax GREATLY reduced the incidents of total bone collapse. In fact it almost eliminated it in the 2 years that the study was performed. I will have to dig it out and see if there is any web address on it so you all can read it too. From what I remember they stated that longer monitoring was needed to determine if it kept it from happening altogether or it was just retarding the collapse.
It also stated that there was no evidence of re-generation of the necrotic bone. I also am not sure if it has any relationship to the pressure build up inside of the deseased bone. I can say that in my case the x-rays are not showing much if any progression in the area of effected bone. Although I am noticing that over time my pain still seems to be increasing but to this point it is not anything that I have not been able to deal with.
As far as taking the medicine I can't even tell that I have taken it. I need to go back though and read the literature to see what long term side effects I may be looking at.
In my case since it was caught very early by accident I think if nothing else it is buying me some time but I don't think it will change the inevitable THP.
I will try to find that study and see if there is anyway that you all can access it. Best of luck! We are all in the same boat here!

 

[Josephine]

I'm planning to create a sticky on Fossamax with info and useful links very soon. Keep watching!

 

[Randy]

Hi,
I went back and dug up the study that I was speaking of earlier. It came from the web site www.ejbjs.org (The Journal of Joint and Bone Surgery). There is a ton of information there! I was not able to access the entire article but did find a brief summary. Go to the search bar and type in Alendronate to prevent early collapse of the femoral head and it should take you to it. It was in, I believe October of 2005 but I am not positive on that. Anyway there are a lot of articles on different topics, some of which you can access freely and some you can not. I found some other interesting articles dealing with the biophosphate topic.
It can be overwhelming to try to absorb so much of this information, at least for me. I am not a doctor but obviously have a personal interest in this subject. It is amazing the number of studies and the intelligence that some of these people must have. Maybe one of them will figure something out to improve how this desease is being dealt with.We can only hope!!!!Good luck!

 

[shanvey]

My husband was diagnosed with bilateral AVN in March of 2006. His ortho surgeon prescribed Fosamax. By August, the pain was awful! By this time, his right femur head had collapsed. His ortho surgeon then decided to do a core decompression on the left hip and then to schedule a total hip replacement on the right side. We did not know any better. He had the core decompression done and waited the 6 weeks for the hip replacement surgery. During this time, we researched the minimally invasive hip surgery. We got a second opinion from a surgeon that is 100 miles away (minimally invasive is not offered in our hometown). The 2nd opinion ortho said that he could not even tell that core decompression had been done on the left hip. He does not believe that Fosamax shows any promise with AVN unless caught very, very early. My husband had MIS hip replacement last November. He walked with no assistance, full weight bearing the same evening as the surgery. He did stairs (unassisted) on the first post op day and went home the 2nd post op day. We are scheduled to go next week for evaluation of the left hip next week. His left hip will be replaced before the end of the year.

Hope this helps
Sandy

 

[Josephine]

Well, that's definitely an "Oh Phew!" for that second opinion. I am always in favour of 2nd opinions - there's nothing to lose and a whole lot to gain.Except you need to be careful that you choose the second guy!



A (slightly off topic) cautionary tale ....
A dear friend of mine, whose shoulder op went badly wrong, finally acceded to my urging she have a second opinion. Instead of talking with her family doctor about it, she asked the surgeon who happily agreed and then went into the clinic next door to fetch his senior colleague, one time mentor and great friend to come and have a look! They chatted in front of my friend for a few minutes and looked at xrays whereupon he pronounced the surgery to be 'the best that could be done under the circumstances'!! and departed.

 

[Randy]

I just wanted to take a minute to let you all know that I am still hanging in there. It has been 19 months since I was diagnosed with Bi-lateral AVN, they labeled it stage 1. I am still taking the Fossamax once a week and have not had any other treatment. It has been 10 months since my last visit to the doctor. My ortho does not put much faith in the core decompression and said that he would only recommend it to reduce severe pain. If my condition continues to deteriorate, which at this point at least is not happening quickly. He gave me the choice of free fibular bone grafting or THP. After researching these options , success rates, recovery times, location of where the procedure could be done, and probably other things that are not coming to me right now, I decided on the THP. I still hold out hope that it will not be necessary but I doubt if that is being realistic.
I will be going back for a check-up around the first of the year and see what that brings but at this time my pain level is still within the limits of what I can deal with.
I thank God everyday and often stop for a moment when I am relativley pain free to just enjoy the moment.
This whole thing has and continues to be so overwhelming! Thanks!!