Any post op ES patients have regrowth?

There have been a couple of members come back to the site after successful surgery because they've had symptoms / regrowth again. I can't remember names though, I'm sorry. You could try having a search through the past discussions.

How are you doing- presumably not so good? I've not seen you on here for a while, and was going to message you to ask how you were?

Unfortunately, we are dealing with this now. So, yes, there has been regrowth for my son, just one year post surgery.

Really sorry to hear that, is he in a lot of pain again?

How is he doing now? Did the doctor take regrowth out or say why it regret and how to prevent it. Sorry, to hear this. I hope he’s better.

My son has had 2 revision surgeries this year, one on each side. The revision surgeries confirmed new bone growth. The bones were almost as long as they were the first time they were removed. We are now one month post second revision surgery and I am happy to say he is once again pain free. It is unfortunate that it took from last September to now to accomplish this goal, but as every ES patient knows, nothing happens quickly and it is always an uphill battle. No one really believed the bones grew back, but they did. I was told they will publish my son’s case, but publishing a case can take years. In the interim, I have told his story on my own in book form and I hope it will help others. The pain that these bones caused over the years is horrific and I wish that every ES patient could be taken seriously, treated with respect and find excellent surgeons to remove it completely. As far as how to prevent - there are NO answers. We can only pray that as my son continues to grow, that these bones do not grow with him. Thank you for asking about my son. :slight_smile:

@mooncat Do you have new symptoms? Did your regrow as well? I tried to look back at some old posts to see what you have shared about your experiences but it looks like everything was from 2015. I hope that you are okay and not asking about regrowth due to a return of symptoms.

Glad that he’s now pain free again, and hope that the growth now stops. And thanks for pushing to get the doctors to publish his story, and for doing what you can to get the info out there- hopefully it will help others. Best wishes to him!

EarMom - I’m sooo happy to hear that your son is pain-free again. He’s in my thoughts and prayers that this is the final fix.

Thank you @heidemt. We hope this is it!!! We are forever grateful for your help. You are in my books and they will be out soon (not by name, of course). I want to make sure something good can come out of my son’s suffering and that I can pay it forward for as long as someone needs to find this information. (as you continue to do by staying so active on this forum). How are you doing these days?

Hi Earmom - I’ll private message you.

Earmom, who did the reviwsion surgeries?