THR Autism and THR

[beach73]

Had anterior R THR 1 week ago, new hip is amazing less pain than pre op and walking with walking stick so much better already. I had surrendered to the fact that if I wanted to walk again I needed this op. Never had surgery or been in hospital before except childbirth. I have autism but its not usually a big deal and I dont usually mention it even. I didnt mention it preop or while I was in hospital. I am quite traumatised by my hospital experience and with benefit of hindsight think maybe my experience could have been improved if I had shared this information.
Having virtually zero control of my environment in hospital, massive sensory overload and a very strong preexisting dislike of attention meant when complications developed and I got stuck in ICU for 4 days the going got rough.
I will need my other hip doing one day if I can ever muster the courage again. Anyone else here with autism and have any effective coping strategies for hospital?

 

[Mojo333]

Hi @beach73 and welcome back to the healing side of the forum.
Congratulations on your new hip!Healing does take time, but you are on the way back to healthy and happy!

If you could let me know what the date of your surgery was, we will add it to your signature.
I don't know if any of our members are autistic, but thank you for sharing this as it may be that it just hasn't been brought up due to a hesitancy by members to share.
I will say...My hospital experience was pretty average, in hindsight, but as I was super nervous because it was my first major surgery...I felt a bit traumatized also.
I cannot imagine how scary if must've been dealing with the conditions you describe above.
I think when you go to your post op, you should definitely let your OS know about how this affected you if you will be having him do your other hip.
I think you should tell him about the Specific stressors along with suggestions you may have to help make things easier.
You sound very brave and hopefully the fact that you did get through it will help if you need hip surgery again. Knowing what will happen will have to help some...

Now is the time to chill and heal
Will leave you the guidelines below and am sending healing vibes your way.

 

[Mojo333]

Here you go...
Hip Recovery: The Guidelines

1. Don’t worry: Your body will heal all by itself. Relax, let it, don't try and hurry it, don’t worry about any symptoms now, they are almost certainly temporary​

2. Control discomfort​

rest​

elevate​

ice​

take your pain meds by prescription schedule (not when pain starts!)​

3. Do what you want to do BUT​

a. If it hurts, don't do it and don't allow anyone - especially a physical therapist - to do it to you​

b. If your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again.​

4. PT or exercise can be useful BUT take note of these​

BoneSmart philosophy for sensible post op therapy​

5. At week 4 and after you should follow this ​

Activity progression for THRs​

6. Access to these pages on the website​

Oral And Intravenous Pain Medications​

Wound Closure​

​

Pain management and the pain chart​

Healing: how long does it take?​

Chart representation of THR recovery​

​

Dislocation risk and 90 degree rule​

Energy drain for THRs​

Pain and swelling control: elevation is the key​

Post op blues is a reality - be prepared for it​

Myth busting: on getting addicted to pain meds​

Sleep deprivation is pretty much inevitable - but what causes it?​

BIG TIP: Hips actually don't need any exercise to get better. They do a pretty good job of it all on their own if given half a chance. Trouble is, people don't give them a chance and end up with all sorts of aches and pains and sore spots. All they need is the best therapy which is walking and even then not to excess.

We try to keep the forum a positive and safe place for our members to talk about their questions or concerns and to report successes with their joint replacement surgery.

While members may create as many threads as they like in a majority of BoneSmart's forums, we ask that each member have only one recovery thread. This policy makes it easier to go back and review history before providing advice.

 

[Jaycey]

@beach73 Welcome to the other side!

Being in the hospital is stressful enough. I can't image having to deal with the issues Autism presents as well. By all means please let all staff know about your Autism. They will make adjustments to your care to try and make you more comfortable.

Thanks for sharing this with our members. I am certain there are others out there who just haven't shared their experience. I hope they will come and chat with you.

 

[zauberflöte]

@beach73 my word you are a brave one. My younger son, now 30, has autism (and, differently to you, looooves to have attention). I cannot imagine him in the hospital. I think you have a better approach than he ever will. Also, here in US, I'm not sure telling hospital staff you're autistic will get you much understanding, but more of a "yeah yeah you look and act normal so what's the big deal?" type of vibe. I hope it's better in AUS! If it were me, I'd prepare a written bullet-point list of my sensory and miscellaneous preferences, with solutions bolded right next to each entry. Posted on that white board all our hospitals seem to use for the nurses to ignore, and on the wall outside the room so no-one busts in at 0200, yelling back over their shoulder while they flip all the fluorescent lights on at once. And then they wonder why you're not very cooperative (this happened to me, I did not cope well physically, and I'm not particularly on the spectrum).

My late mom had dementia, pretty severely for several years, and I found her behavior sometimes to be exactly like that of my son when he was an out-of-control toddler and pre-schooler. When she had to be in hospital, I had to advocate for proper care for her with every person who came in the room, each time they entered. Speak gently slowly, facing her. Slowwwwly! Do not sneak up behind her and then speak, she may appear to go ballistic-- from fear. All those random announcements that are coming over the room's PA system, could we turn them off please, it's too much for her to handle. Etc etc. Sometimes I have thought that autistic people would make the very best caregivers for dementia people. All that to say, would you feel comfortable with a trusted advocate next time round? I cannot imagine how you got through your ICU days-- nobody handles that well!

And! Congratulations on the shiny new hip! I'm very glad you're walking well. Take it easy and don't overdo things, sleep whenever possible, take your meds by the clock, wear ice, and read or binge watch to your heart's content!

 

[Going4fun]

Yeah, it's best to share all information about our conditions before a surgery. Of course, doing so can feel awkward and vulnerable. I don't have autism, but I have had depression, and I didn't need to formally disclose this because I take depression meds and that info is clear. Afterwards, I noticed that the checkup surveys sent by my surgeon always included multiple questions about depression. The survey would ask the question in multiple different ways, using different language, which is good technique.

I alerted my therapist ahead of time to the surgery (probably bored him I talked about it so much) and I alerted my nurse practitioner in case I fell into a depression hole and needed quick help.

I had a close friend who had breast cancer years ago. She went through a lot of biopsies, a double mastectomy, then reconstruction of her breasts with implants. Tons of surgeries. Well, she got extremely nauseous after anesthesia, but she didn't want to tell the anesthesiologists. She had internalized a lot of embarrassment, perhaps shame, about her extremely sensitive body. Finally I prevailed on her to tell the anesthesiologist about her post-procedure nausea. There was a sharp resident handling her case (with his older supervisor listening in in the background).

"Oh, that's easy to fix," the resident anesthesiologist said. "We can easily knock that out." He added an anti-nausea medication to the anesthesia cocktail. Sure enough, my friend had no nausea after that surgery or subsequent surgeries. Moral of the story to me, is that medical people quickly shift to solution. And in your case, maybe headphones (with white noise or blocking out sound) afterwards would have been good ... or a blinder over your eyes. My point is a good hospital staff would have shifted into problem-solving mode.

It takes a little faith to reveal our vulnerabilities, especially when we have the fear that people will look down on us and when we aren't sure there is a good solution. You might have feared that the surgeon and their staff would have been unsympathetic to your condition, and that's understandable. But good surgeons and good nurses really just want the best outcome for people. And remember, surgeons are people too--they know of others, including other surgeons, with family members and friends who have autism.

These days, I've trained myself to disclose problems to my medical providers, even when I don't imagine there is anything they can do. Almost always there is something they can do. Part of my anti-depression training has been to learn to not trust that initial feeling and fear that nothing can be done--and to not trust that initial feeling that I'm going to be embarrassed or shamed or dismissed if I disclose something I feel vulnerable about. Almost always, that fear is proven wrong.

 

[DEL2020Jul-11]

I will need my other hip doing one day if I can ever muster the courage again.

I am quite traumatised by my hospital experience....

Having virtually zero control of my environment in hospital, massive sensory overload...

Dear @beach73,
I hope for you as smooth of a recovery as possible. Post hospitalization, you sound like you and your new hip are doing very well!

 

[Elf1]

@beach73 and welcome to the healing side, so happy that you're here now and sound like you're doing well. I can't even begin to imagine how traumatizing your experience was. I had a not so great experience once I was taken to the Ortho floor so I can empathize with you though. And unfortunately, hospitals seem to be the last place to get peace and quiet.

 

[beach73]

Hello everyone and thanks for the replies. My op was on 11th June. Its morning here now and I had a good nights sleep, which is unusual for me but was amazing. I still cant quite believe I am on the other side and my hip is fixed, it just needs to heal now.
I dont want to dwell on my hospital experience but I dont want to bury it either. I need to deal with it for next time. And hopefully sharing will help others too. I think if I hadnt had complications I would have been ok but complications are a risk of any surgery and I should have given more thought and planning preoperatively to the possibility of such.
I could advocate for myself to a degree and request close the curtains, turn off the lights but so many other things like drips, monitors, tubings
were out of my control. The foot pumps were the worst. I hate them with a vengeance. I lost the ability to communicate how I was feeling because my strongest need was to be left alone all I could say was ‘I am ok’. My internal senses are different anyway and I often dont know how I am feeling. But I wasnt feeling ok.
I do feel ok now though and I do love my new hip. My old hip went downhill very quickly to the point I couldnt work for the last 2 months. I plan to return to work in 2 months but this can be extended if needed.

 

[zauberflöte]

Those foot pumps are something else. You are right not to dwell on your experience while you are healing up. There will be time to process later.

I'm so glad you got good sleep, and feel ok now-- that's wonderful! And your back-to-work plan sounds like a good start, especially if you can get more time if needed. Perhaps you might be working from home to begin with anyway? And perhaps you can start back in a phased way-- part time for awhile.
Rest well today-- I'm going to bed!

 

[Layla]

Hello @beach73
Welcome! Thanks for joining us here and sharing your experience as it may be beneficial to someone in the future.

I’m sorry you had such a rough start and for the stress it caused you. Hopefully you’re resting comfortably at home. A belated Happy One Week Anniversary to you.
I hope today is a good one!

 

[beach73]

The first 5 days post op I was stuck in bed and couldnt try out my new parts. The first few days after that very minimal pain when walking and using walking stick mainly for balance. I could fully weight bear comfortably on my new hip. The last couple of days I have had more pain and am unable to fully weight bear due to pain. I feel so disappointed about it. I was using Panadol (? Tylenol in USA) and celebrex. I was discharged with endone so have taken one this morning which seems to have helped. I dont think I have been overdoing it, I am only doing basics, getting up for the toilet, food, shower. I have been icing and resting in bed a lot. I feel almost like I am under doing it but I should listen to my body. Is it normal to go from being able to weight bear to not being able too?

 

[zauberflöte]

@beach73 I had to look up endone, but it's plain old oxycodone. I had that for both hips, and was advised at hospital (and here at that time) to take it by the clock so as to stay ahead of the pain. Forgive me jf you have a reason for not wanting to take opioids!

I took mine regularly for weeks. I started the "weaning" process after about 5 days I think, substituting in acetaminophen for the missing oxycodone. Probably by the end of the third week I was only taking the night dose, for better chance at sleep. I also had celebrex for 4 weeks, which was "to help me get off the hard stuff sooner". I felt that controlling the pain would allow me to move around more easily. While I didn't get up and dance jigs, I walked some laps on the deck and later on the street, to keep the stiffness at bay and to feel more human! Also, in the beginning, the narcotic made me sleepy, and sleep promotes healing so I understand. So my experiences didn't involve not being weight-bearing. But you had five days in bed, which sapped your strength, so pain will make the weakness worse. So perhaps ask your surgeon how he'd recommend managing your pain better.

And one thing that doesn't take a doctor to advise is, keep that ice on that hip all day long! I wore ice 24/7 for a month for both hips, and used it liberally in the weeks after that too. I hope the pain will improve quickly for you!

 

[Mojo333]

Hi @beach73
I know one week post op was a tough time for me as everything seemed to "wake up" it was important for me to take my pain meds on schedule. Staying ahead of the pain is what kept me a bit more mobile and it sounds to me as if you are undermedicated.
Our bodies definitely are put through some trauma putting that new hip in...and these are super early days so try not to worry.
Keep that ice going as much as possible and keep telling yourself "all temporary".

It was very hard for me to get comfortable for long...and I would get up and take very short trips down the hall or into the kitchen when it seemed I could not sit or lay any longer.
Definitely the tough part...and does get easier.
Hope today is an easier day.
Healing hugsxxxx

 

[Layla]

Hello and Happy Monday
I found the Activity Progression for THR from the Recovery Guidelines proved to be a good rough gauge for activity and will keep you active enough, without landing you in the ODIC (over did it club) as we refer to it here. http://bonesmart.org/forum/threads/activity-progression-for-thrs.13187/
I’m sure if you‘d prefer reassurance from your surgeons office, a member of his care team could advise through a phone call. Possibly a couple more days of rest, ice and elevation will bring positive improvement.
We‘re rooting for you...please stay in touch.
@beach73

 

[beach73]

Thanks for the replies they definitely help. The activity progression link is great thanks Layla. I got pericarditis and had to go back to hospital for a few days. I probably should have gone in sooner than I did but once there was ok. I guess I learned a trick or two from my previous admission and was able to negotiate early discharge with outpatient followup so I didn’t have to stay as long. Anyway sucks about the pericarditis but it should resolve itself in a week or two but I feel more confident about the prospect of having my left hip done.

My new hip has settled down again probably because I was stuck in bed for a few days. I still cant fully weight bear on it but using the walking stick to take some weight I feel my gait is reasonably normal.

I was surprised post op to learn I have no restrictions apart from a leg back twisty motion. I was told I can cross my legs which I haven’t tried yet and sleep in any position I like which is good because I do wriggle a lot at night. I can lie on my stomach quite comfortably and Iie on my right side, that gets sore after a few minutes though. Mostly I lie on my back or my left side. I feel my right leg is getting stronger I can get into and out of bed without giving it any support.

When I was in hospital a nurse who was taking me for a scan told me she had had both hips replaced one 2 years ago and one 3 years ago and she was walking perfectly normally. She even had the same surgeon as me, I found it really reassuring to hear. A bit like reading the success stories here .

 

[DEL2020Jul-11]

Hi @beach73 - While I am really sorry that you have pericarditis, I am relieved that you are doing better and already out of the hospital. It is encouraging to hear how well you handled the hospital environment and that you now feel more confident about going to the hospital for when you have your left hip done!
Sounds like your new hip is settling nicely, and it is great that the hospital nurse's positive experience (with her replacements, done by your surgeon) was so reassuring!
Thanks for the update, and look forward to hearing more about your recovery.

 

[Layla]

Hello and Happy Wednesday
I’m sorry to hear about the set-back you had necessitating a trip back to the hospital. Thankfully it is resolving and you are back on the road to recovery.

Amazing you’ve tried side sleeping already. I was such a chicken, I think I waited....a couple months!

You‘re very brave. You’ve been through a lot and have taken it all like a champ! I enjoy following your journey and hope you’ll continue to share here.
A wonderful rest of the week to you!
@beach73

 

[zauberflöte]

Ugh @beach73 pericarditis. My dad had that 30 years ago. He put off going to the dr for months-- I'm glad you got on it quickly, and were successful in your hospital negotiations. And chatting with that nurse with the THRs-- that kind of thing is immensely reassuring, isn't it.

Sounds like your hip is coming along well! You are very brave to even try lying on that side-- took me months with both hips! And knowing that you don't have to worry about how you sleep will hopefully lead to good sleep

 

[beach73]

3 weeks already. Felt like I was waiting forever to get my hip fixed and now it is in the past. Pain has virtually gone currently on 2 panadol twice a day, winding them back slowly. Still icing a few times a day.
Went on my first solo walk today to the shops all of 5 minutes away but it was good to get out. I need to put a little bit of weight on the walking stick at times and othertimes none at all. I feel like I am walking normally but my daughter said I wasnt. I got her to video me walking and she was right my gait still isnt normal even though it feels normal when I walk and I am not in any pain. Do you think my gait will just correct itself with more time, or should I see PT? Is it unrealistic to expect a perfectly normal gait? It’s just weird because it feels to me like it is normal, though maybe thats just because it was so abnormal before the THR.