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THR Equestrian's journey to a new hip

PolarIce

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My trials and tribulations started 15 yrs ago. I could write a book about what I went through, and I had known back then all the things that I would be going through, I might have just written one LOL! I have done the shortest recap I could below to sum up what has happened.

-Born with hip dysplasia. Not diagnosed until 21 yrs old.

-Bilateral dislocations for 2 yrs before PAOs done.

-Had 3 PAOs(2 on L hip due to non-union).

-Bilateral Impingement correction surgeries on hips.

-Bilateral arthroscopies for labral detachment and tears x 6

I currently suffer from from severe pain with walking that is longer than 30 mins. If I take the "odd" step(this is not specific to rotational step or anything like that, this could be just a regular step), my hip "catches" and I get sudden severe pain(this my guess is probably due to a labral tear, detachment again). I ride as an amateur rider, but can't ride anymore at this point because the sudden jolts on my hip(the pain), is unbearable. I spent my last ride on the weekend in tears. I don't sleep at night because of back pain if I sleep in certain positions, I have a short gait when I walk because a bigger steps hurts. I have fantastic flexbility and can bring my knees all the way to my chest.

Surgeon will not do anymore hip scopes because he says I have too much scar tissue because each hip has has 3 scopes each. He says the risks of problems from further incisions and scar tissue outweights the possible positive results. So I have a crappy hip where he won't do another scope and he said he Im too young for a replacement.

He suggested to try Monovisk injections which I have been doing for the last 2 yrs since I last saw him and do help but I still suffer from a lot of the same problems, and I find they are working less and less.

On xray the joint looks "good" and current surgeon not wanting to replace joint the last time I saw him almost 2 yrs ago because I am just too young, but he did say that I will need that joint replaced-yet he offers me no option but some crappy lubrication shot....

Currently waiting for my GP to get me a referral back to the orthopod to ask him one last time if he will PLEASE replace the joint. If he doesnt, I need to get myself a new referral to see a new orthopod to try to find someone else.
 

subie2021

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I'd forget another visit to that guy and find someone new. Why waste your breath, and probably tears? Find someone who will be excited to help you.
Best wishes going forward to a reclaimed life.
 

Going4fun

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So sorry to hear of your agonies and frustrations and ups and downs and pain over time.

I highly suggest you consult with multiple new surgeons. The idea of being "too young" for a hip replacement is not uniformly shared by hip surgeons. Many surgeons don't hold to that thinking--at all!

Go consult with new folks.
 
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PolarIce

PolarIce

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The newest update-I last saw my orthopod almost 2 yrs ago right before Covid showed it's face. At the time my orthopod who has been following me for about 10 yrs now(the one who did the scopes and the removal of the impingements), did say that I would need a replacement on that left hip that has been causing major problems), but that I was still quite young, and that on x-ray my hip didn't look quite "bad enough" to really consider replacement yet. He suggested I try hyaluronic acid injections and sent me my way. I have been doing those with some relief, but of course they only last about 3 months(to the the standard 6 months is what is normally expected in most people according to what the manufacturers say), and without those injections, I literally cannot walk.

During Covid all appts had been cancelled and no one could see the physicians. They have re-opened appts, so I have mande one to see him one last time in the hopes that I can convince him to take the hip out and give me a new one.

I saw my family GP to get a referral for another Surgeon, but unfortunately the only way to get one in my area is to go through a Physio clinic and be seen by a physician there and IF they think you are a surgical case, only then THAT physician will give you a referral to see a orthopod. So if my original orthopod refuses still to replace my hip when I see him in 2 weeks, I will have to try to convince someone else to see me.

It's been hard to mentally stay afloat through the process. It's hard to not get frustrated at posts of people on Facebook groups who complain or are negative during their recovery process post surgery, when there are people like myself who are fighting to be able to be in their position. What I would do to be able to be in their shoes right now. I would truly welcome the pain and difficulty of post surgical recovery if it would mean I had hope to a normal life. I am so grateful for this website and the support all of you offer-you can't put a price on that and a thank you doesn't even truly express how grateful I am for all this when one feels so lost and alone.
 

Pumpkin

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I literally cannot walk.
Sounds like you need your hips replaced, you are way to young to be missing out on life, barely able to walk, and do all the normal activities that someone your age would be doing. You are too young to be spending your youth limited waiting for a THR.
Ask you surgeon why he wants you to spend your life significantly limited, waiting to be old enough, all the while your hips will be getting worse and worse limiting your life even more.


X rays do not tell the whole story, often they get in there and the hip is a lot worse than they thought.

Take this score chart so you and your surgeon can see just how limited your life has become. Often surgeons have no idea how poorly we are doing.
Score chart: how bad is my arthritic hip/knee
 

ReluctantHippy

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@PolarIce I am truly humbled by your experience. I am one of those people who is scared and pretty negative about the surgery ahead, and your experiences make me so sad. I’ve been told I’m young but no other option, so I agree with everyone else who has said the same - please find another surgeon who will listen to you in the way you deserve. I wish you all the luck in the world, you are extremely brave.
 

Going4fun

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Just make sure you do not understate your pain when you meet with the doctor. It's very easy to understate agony, especially if the doctor greets us with "How are you doing?"

It's funny: if you get that question, you need to go negative. I'm not saying exaggerate, but really describe the level of your pain and how it is disrupting your life and dampening your mood. Don't be afraid to get emotional. I once caught myself answering the "how are you?" question with, "I'm doing pretty well." I had to then hustle to backtrack--once I realized that the question was not a friend's greeting but a question about my health. So I then emphasized the health problem I was having.

Doctors read our emotional reactions as closely, if not more closely, as they listen to our words. You want to communicate that the pain is getting unbearable and the ejections only provide short-term relief.

This is not the time to "be positive." Make it clear that you are ready for the surgery.
 

djklaugh

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@PolarIce Here's another aid to convincing your doctor to replace the hip(s) - click on the attachment, print it, fill it out and take it with you to appointments https://bonesmart.org/forum/threads/score-chart-how-bad-is-my-arthritic-hip-knee.19871/

Also here's a pain scale - although it's meant to be humorous it does give you a good idea on how to rate your pain levels https://bonesmart.org/forum/threads/new-kind-of-pain-scale.52544/

We have seen a lot of younger folks getting hip replacements - including some teenagers! And recently 2 police officers in their 30s.

Best of luck to you!
 

subie2021

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@PolarIce Good advice above, IME that from Going4fun is spot on.
Don't try to be nice, be truthful. Let the physician and anyone on his staff who comes into the room tapping answers into a tablet know how diminished your life has become. Be specific as in "I used to walk/run/ride X hours/miles a day, now I can only do Z." Let them know you are more and more isolated from your friends. Don't worry about some tears flowing, it's time for truth not toughness or being nice. They won't view you as a complainer; they'll see a person in physical and psychological pain.
At least some of this or some sort of statement about it should wind up in the visit report. And that becomes part of the "evidence" when the powers that be decide if you need surgery.
 
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PolarIce

PolarIce

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I literally cannot walk.
Take this score chart so you and your surgeon can see just how limited your life has become. Often surgeons have no idea how poorly we are doing.
Score chart: how bad is my arthritic hip/knee
Thank you so much. Great advice and I will print off this chart, fill it and take it with me to the appt.
@PolarIce I am truly humbled by your experience. I am one of those people who is scared and pretty negative about the surgery ahead, and your experiences make me so sad. I’ve been told I’m young but no other option, so I agree with everyone else who has said the same - please find another surgeon who will listen to you in the way you deserve. I wish you all the luck in the world, you are extremely brave.
Thank you so much. I am really touched by your reply. I'm no one special. I am normally someone who is VERY positive and outgoing and find the best in every situation. Lately as things are so uncertain and I am becoming disabled, it's been a true mental challenge to work through. Never thought I would find myself in a position where I would have to fight for my own health. Your kind words really mean a lot. Thank you so much for taking the time to reply.
Just make sure you do not understate your pain when you meet with the doctor. It's very easy to understate agony, especially if the doctor greets us with "How are you doing?"

It's funny: if you get that question, you need to go negative. I'm not saying exaggerate, but really describe the level of your pain and how it is disrupting your life and dampening your mood. Don't be afraid to get emotional. I once caught myself answering the "how are you?" question with, "I'm doing pretty well." I had to then hustle to backtrack--once I realized that the question was not a friend's greeting but a question about my health. So I then emphasized the health problem I was having.

Doctors read our emotional reactions as closely, if not more closely, as they listen to our words. You want to communicate that the pain is getting unbearable and the ejections only provide short-term relief.

This is not the time to "be positive." Make it clear that you are ready for the surgery.
I had never thought of it this way. I really appreciate you taking the time for this advice and helping me prepare HOW to answer him and give him that feedback. Going to really practice how I want to translate to him how diminished my life has been. Thank you so much for your post. Incredible words of advice.

@PolarIce Here's another aid to convincing your doctor to replace the hip(s) - click on the attachment, print it, fill it out and take it with you to appointments https://bonesmart.org/forum/threads/score-chart-how-bad-is-my-arthritic-hip-knee.19871/

Also here's a pain scale - although it's meant to be humorous it does give you a good idea on how to rate your pain levels https://bonesmart.org/forum/threads/new-kind-of-pain-scale.52544/

We have seen a lot of younger folks getting hip replacements - including some teenagers! And recently 2 police officers in their 30s.

Best of luck to you!
Thank you so much. I will go print those charts and bring those with me to the appt. Taking a look at those now, it's quite pathetic how poorly I score on them. I am so stressed about this appt. I really hope something positive comes out of this.

Thank you so much again everyone for all your advice and help with your recommendations and input. I will take all of it to prepare for this appt, and really prepare how I want to answer all the questions that may come up as well as communicate to him how poorly I have been. Prayers is the other thing I have going that I can hope will assist me if any of you have some to spare.
 
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PolarIce

PolarIce

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New update as of 90 mins ago.

I just walked out of the surgeon's office and I had to udpate you guys. Most of the family hasn't even been updated yet! Took in the pain score sheets you all suggested and filled them out and took them in to see the surgeon who's been following me for the last 10+ yrs.

He listened to me for literally 1.5 mins and immediately agreed to go ahead and replace the hip! I didn't even get to showing the pain charts I had printed and filled out. He listed to my symptoms and didn't even look at my new xrays, and went ahead and agreed that now is the time to take it to the next step. He then looked at my new xrays and did confirm that now is the time to do it.

He said he is putting me on the urgent list for the replacement because how bad my symptoms are. He said he will keep me overnight because I have had so many surgeries, that he wants to make sure that I stay in observation overnight.

He did say that he wants to put in a Dual MOBILITY hip joint which is a bit different than regular joints, because he says he has noticed that I have hyper mobility.

I can't even express how happy I am right now. They said I am looking at about 6 months to get a surgery date. At this point I am just so relieved to HAVE a surgeon agree to give me a new joint, that the wait time to me is irrelevant.

I want to thank you all again for your love and support through all this. More updates to come.
 

Mojo333

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:yahoo:
If you place the words "dual mobilty" in our Search feature, you will see many members who have had this kind of implant.
 
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PolarIce

PolarIce

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:yahoo:
If you place the words "dual mobilty" in our Search feature, you will see many members who have had this kind of implant.
Thank you so much for the suggestion, I was able to find some great threads I had yet not found! all priceless information and resources. I am so grateful for this forum.

The days really become long waiting for the call for a surgery date. I was told it would be within 6 months(due to Covid it will be within 6 months). You realize how mentally strong you were trying to make the best of things when you knew you had no other options(before I saw the surgeon and knew that I could get the hip replaced), and thought that this hip was the only thing I would ever have to walk on-when you finally actually have the miracle answer you actually truly needed and you suddenly realize how unbearable life really was(because now you know this bad hip is going to be replaced), but you just made due because you didn't have any other alternatives.
Life is still barely functional as is, but I can now live daily with some peace and happiness knowing that the end is near(the end of these traumatic, depressive 10 yrs of suffering), instead of living with depression and anxiety not knowing how to live and function TODAY let alone tomorrow, when you can barely walk yourself to the bathroom or the laundry room to go do basic activities of daily living(not mentioning that I have been working full time through this whole thing). Man the tears that were shed from the pain, from the frustration.

Sleeping at night is very difficult. I suffer from a lot of pain in my left bum cheek as well as lower back. I also wake myself up during the night when my foot drops to the outside because it causes a really sharp pain. Not sure why it causes that, but that's yet something else that won't stop. If anyone has suggestions to relieve some of this or positions or ideas, I am willing to try anything :)
 

Layla

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I also wake myself up during the night when my foot drops to the outside because it causes a really sharp pain.
I‘m sorry you’re dealing with pain. My heart goes out to you. I found that a heating pad helped toward the end, right before my surgery. I used to go to bed early and watch tv, simply to get off my feet and found some comfort with heat. Also, I’m wondering if you placed some type of barrier, like a firmer bed pillow under the covers next to the outside of your foot, if it would keep your foot from dropping outward while asleep, then causing you pain?
Wishing you comfort with hopes you get a date scheduled soon.
 

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