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THR Cannot sleep in bed

Trotter my heart goes out to you :friends:
I've been so hopeful that you'd get some better news. It's not much of a consolation to be a medical miracle under the circumstances but in a tiny way, I hope that maybe getting involved in a case study will provide you with ongoing specialist care. Logically, as a case study you would be getting very thorough and constant monitoring and that would involve the most experienced and knowledgeable people. Who knows, maybe even coming to the attention of world-wide experts. I guess I'm just trying to reach for some light at the end of the tunnel but I think that's how I'd personally be gauging the situation.

In the meantime, how is your mobility and pain? Are you able to get around and out and about? What are your pain levels?
 
@Deni444 Around the house mobility is good. I can get around to do odd jobs. If I need to walk into the village I need my walking pole. Even then I cannot walk to far without pain in my hip. It looks like the walking we used to do in the Lake District will be a thing of the past. I can kneel down in the garden but it is extremely painful and I need a chair to help me up. The pain is from a 5 to a 10 everyday depending on what I am doing. So not the outcome I wanted but at the moment it will not define me.
 
I'm glad you are getting about despite the discomfort!

No need to give up having fun in the Lake District :). There are places springing up all over the place that hire out all terrain scooters. Depending on how much mobility I regain after the second surgery, I'm keen to get an all terrain scooter. There are some absolutely amazing options. Not cheap but worth it if you like the outdoors and can't manage it on two feet. I've got my eye on a Baja Wrangler.

Here's the name of one of many hire locations:
Visit Lake District
lake district.com
Outdoor Activity Cockermouth
 
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Just noticed you were on the forum Trotter... How are things going? Any improvement in the pain?
 
@Deni444 Pain has eased, due i think, to the painkillers issued by my doctor. My mobility is about the same. To be honest I have been scared to walk far in case I cannot get back. So places we would have normally walked to I either drive or do not go.
How are you?
Your operation must be near.
 
Hi Trotter,
Thankfully pain has eased some for you. That's good news. I hope it continues.
A helpful hint - We each have a signature which reflects our surgery date, or dates and lists any upcoming procedures. It is located at the bottom of each members post. If you're unable to see it and you're using your phone, turn your phone sideways, into landscape mode and you should be able to see the signature information.
Hope this helps :thumb: Have a nice weekend!
@Trotter
 
That's a win, less pain is worth celebrating! My walking is still pretty minimal and similarly, a little extra is often a lot too much but I plod on. Next surgery is a week today and thankfully, I'm not terrified this time. That's a win for me :)
 
@Trotter HO studies would indicate when bone stops growing pain usually subsides. you would be left with the stiffness. That would be dependant on Brooker classifications. I never had my pain subside prior to my 2yr wait for the bone to stop growing. During that time my back, knee and ankle started to really hurt. Alignment was being twisted. Goodluck
 
Hey...any progress is good and to be celebrated. I'm happy for you, Trotter.
It has to feel great accomplishing that. I hope you have a nice weekend! :SUNsmile:
@Trotter
 
That's fantastic news Trotter! You gotta celebrate the wins when they come along. I was able to push on and get a bit more active with the help of extra medication when I first started to push my pace. I then found I could maintain the improvement without the medication. Remember that icing after a walk is very helpful. It's easy to forget to use it after those earlier weeks. I do hope this is a sign you will see some continued improvement, even if it's a little up and down for a while.
 
I am still waiting to see if Radiotherapy is the next step.
However I have decided to stop taking all of my painkillers. I need to feel how bad it is, whether I can cope, as I am fed up taking tablets. I do hope that having some discomfort will help me push on rather than the more sedate lifestyle on meds.
I will let you know what happens.
 
Well, Oncology have decided that Radiotherapy as a stand alone treatment would not be effective in treating my Heterotopic ossification. They have suggested it would be better used as either a pre-op or post-op treatment. So it is back with the surgeons.
 
Thank you for the reply. With regards to the pain meds I lasted 5 days, before I started again. I did not realise how much pain I was in, so probably will not try that again.
 
Trotter said:
Thank you for the reply. With regards to the pain meds I lasted 5 days, before I started again. I did not realise how much pain I was in, so probably will not try that again.
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I understand your concerns regarding the meds. I too got fed up taking so many different types of pain killers; amitriptyline, naproxan, co-codamol...In the end I stopped taking everything except the co-codamol because it was the only medication which helped at night. Unfortunately, since dropping the other medication, my co-codamol use went up a bit. Like you it made me realise I couldn't completely cope without medication. But it was a useful exercise in understanding my pain levels, rather than masking them. Hopefully one day we will both be medication free!
 
We do have to try, pain killers can soon give a false perspective on our pain levels.
I will try again, snd like you hope to be free of meds.
 
Well I saw my consultant just before Christmas. We both agreed not to remove the heterotopic ossification. No guarantee of success, other concern was what would fill the hole made by removal. If it gets to the point were the pain and my mobility are severely affecting my quality of life, it will be removed and radiotherapy given. My right hip needs replacing but for the time being this is to be left. For good measure I have ossification around the base of my spine, which suggests I maybe predisposed to heterogopic ossification. As my body seems to be crumbling around me the joys of ageing become apparent. My wife feels so guilty as she pushed for me to have the hip replacement. I hope this does not seem too downbeat. I have adapted and started to enjoy life again in my own way.
 
Hello Trotter and Happy New Year.
I do wish 2026 was off to a better start for you. No need to apologize for any tone in a post. We're here to support and encourage so we're thankful you're willing to share your story. It is understandable that you feel downbeat at times. It's been a long road and what you're dealing with affects your mood and comfort level along with your mobility. Your wife didn't cause this. You made the final decision for THR based on the information you received and unfortunately you're dealing with a complication. I'm so sorry. I wish you comfort, physically and emotionally.
Please keep us in the loop.
@Trotter
 
Hi @Trotter :wave: Sorry, for the delay in responding. I've been having a holiday from everything 'hip' after a busy year. I was really thrilled to hear you say you are adapting and begining to enjoy life again. That was music to my ears and pretty upbeat in my humble opinion! That's the ticket, so to speak... At the end of the day we have to adapt and search out ways to enjoy the life we find ourselves in. It's not always easy but you are doing marvellously! As for the sad story of your wife's regret, that hip needed replacing. You know from my story that a worn out hip doesn't suddenly stop wearing out. It keeps on degenerating and so you would have ended up pretty disabled without surgery in the end.

A quick bit of research suggests that gentle range of motion physio is beneficial in helping to keep active. Are you seeing a physio regularly to support you going forward? How about the walks? I know you were struggling, have you managed to adapt to a walking schedule?

Here's hoping you can continue to plow on through the challenges of heterotopic ossification and keep on smiling. You are a champion :friends:
 
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