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THR From recovering to worsening - help

Oruru

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Hey there, I'd like to start by apologizing for my english and ranting, as it is hard for me to keep sumarized in another language while getting to the point.

-- Context - -
I'm 27 years old and had my first THR May the 1st, following extreme avascular necrosis on my body due to leukemia treatment as a child.
After years of being mal diagnosed, told to be making it up, fratures, dislodging and the sorts, when finally someone diagnosed had lost over 70% mobility just on my left leg. The doctor said that since I was only 20, he didnt want to operate and would rather wait until i was 35-40 or until I could no longer walk. After more time things got worse, had to use walking aid and due to very disabilitating condition, I asked for a new appointment but they sent me to a new doctor (public hospital). He was different and said I deserved a normal life and there was nothing stoping me and that I should start by replacing one of the hips, later the other. He promised me something I dreamed all my life so I accepted, specially when he said hed be there throughout ....

Tbh, I regret it a lot. I was just called on the mobile one day and said to go to the hospital next day, get checked for covid and then surgery. They left me alone in a room all day, went to get me at almost 1am and told me Id have surgery at 7am. No one ever talked to me of risks, of what would happen next in recovery, limitations, etc. I was scared and kept in the dark always.
The first 3 days were hell and I wished to die. I also did many mistakes like swing my hip all in, join my legs, etc. Since no one talked to me, when I got stronger I managed to use the net on my phone and found this place and tried following all you said, like ask for a pillow for my legs, keep apart, so on.
The first time I saw a doctor it was a mumbling apprentice at day 4, who wanted to discharge me even though I had never left my bed, had sit nor have my drain removed. After correcting her on my condition, she changed her mind and finally told me never in my life to bend over 90 degrees or open hips too much. So they forced me up a few times that day, collapsed, vomited, passed out... Next day 3 doctors came, none my doctor nor surgery doctors, refused to talk except to say I needed to go home. I pleeded with them I could not even sit on a chair much less travel home alone, as I had no one available... They said they'd give me one more day only. 6th day arrives, i finally see my consult doctor. He tries to leave the room without talking to me, I try asking if he did my surgery and he sharply says no and leaves. A kind nurse comes and says she will teach me to use the big canes (dont know word) and that I will go home in a few hours.

Thanks to this forum place, things at home went REAAAALLY slowly but better, I kept following the advice and even with extreme pain, I could see, very little by little I could start moving my leg... Then get up alone... Then use a bathroom alone and even sit on the couch and feed my cats. I was tired but hopeful, finally walking with aids and being more me again.
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.
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Until almost 2 weeks ago. I had follow up appointment day 20th. The days before I had VERY sharp pain whenever sitting on the little pelvic bone / sit bone inside the buttocks of my THR. It was also getting very hard and like a ball inside. I tried telling the doctor but he did not listen to 1 word me or my mother tried to say. After being ignored for the full 3 minutes the consult was, I asked if he listened and he babled "yes, all pain is normal, now go have a nurse do your bandage" ( even after I tried telling I removed all thr stapples on the 15th and the scar looked ok...) after waiting 2 hours for nurse, she insulted my mother and asked why we were there if there was no bandage. We came home dissapointed n tired.

Ever since it got worse, worse, WORSE. I can't sit at all, I barely can walk or move, barely can lay in bed. The pain is non stop and excrutiating, also spread. Now the entire lower buttocks is super hard and so painful even lying elevated hurts. The hard ball inside and around the bone kept growing towards the inwards part to genitals, so now tranverse perineal muscle is all swollen and stretched and everything connecting to it on that side (now pee and bowel hurts much, even if I drink good water and stool softner) . All I do all day is lie in bed trying to cope with it, no more.
A friend nurse came and tried changing my meds: I did before Benuron (paracetamol) and Naproxen every 12 hours... Now it is, interscaling one each time, Brufen and a muscle relaxer Adalgur every 8 hours. It isnt working much better.
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What could it be, how to help it? I searched here a lot and google but what I find isn't t it (not bursitis, not sciatica, not piriform, not coccix).
Using my little savings tomorrow to go to a doctor in PRIVATE hospital but I am scared he won't help since they never do nor believe me, in any of my diseases until it is too late and too much damage is done already. Think I am going insane so I decided to join for help too :c
 
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Hip4life

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Oh, @Oruru this sounds excruciating and it is not normal. Did your nursing friend have any suggestions other than adjusting meds? Is there a lot of bruising? How is the feeling in the leg, does it feel numb anywhere? I’m glad you at least plan to go to a doctor tomorrow. I don’t know what your situation is or your access to healthcare but have you considered going to the emergency room to be evaluated? Only you can judge how bad your situation is but something isn’t right. I hope you get answers and relief soon. Keep us posted.
 
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Oruru

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Hello @Hip4life , thank you for answering and taking the time!
To better elaborate and answer:

- She said it could be a muscular contracture, hence the muscle relaxors (plus I've been popping an additional Valium 5mg each night before bed, to at least sleep a tiny bit for the past 3 days). The Valium I have is SOS since I've had shoulder blade contracture before and thought it could help even before she adjusted my meds. But she was also unsure, reccomended ice and going to private doctor since I have Medis. Sadly when I had contracture, 15mgs Valium and something else made more than half the pain go away in just one go and each day got better with just 5mgs in very little time... So far nothing is working for this though.

- If bruising like hematomes and such, I have 0. Only brusing is belly from anticlot-injections and on arms from the veins they popped.
Also, there is no redness on the area or anywhere else.

- No numbness now, i think. I had before but as days moved and I moved, I started recovering my muscle feeling. But sorta related, I have had issues feeling when I need the "urge" to evacuate, since this worsened.

- The emergency room is out of question, before so so but mostly now with covid... Before Id be sitting for hours in a tiny bench, which I can't, but now with covid it is 100 times worse. Which is why I am going to private ( not private emergency though, since it is much more expensive and I'm having a feeling I'll be paying a lot of expensive exams and I only have my savings to live).
..
.
I'm really scared, living in and out of hospitals has given me a bit of trauma with doctors and their ability to listen believe. Happened with my leukemia, bowel disease, scattered necrosis, alopecia, osteo. Everything is always fine, until a lot of time and money is spent and things are too far gone (sorry for the ranting lunacy).
 

Hip4life

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On the forum, we always recommend the ice and elevating your operative leg higher than your heart. That is a lot of swelling you are describing which causes a lot of pain. I am sensitive and sympathetic to your medical and financial situation. I truly hope you find the answers you need. It is difficult to be in pain without much relief. Sending blessings for comfort and physician wisdom and compassion. Best wishes with your appointment tomorrow. Let us know how it goes. ❤
 

Izabel

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Bem Vindos.jpeg Oruru

Firstly your English is perfect so please don't worry.

I am so sorry to read of your issues through life at such a young age and especially what you are currently going through with your hip.

I have had five operations in Portugal, two by SNS and three Private, and my husband has had one in a State Hospital. We have nothing but praise for our treatment and care, before and after I am British and my husband American.

Will you tell me where you are located please. I am in Algarve and will be more than happy to recommend my Surgeon.

My blessings are with you for speedy resolutions.

z-flores4.gif Izzy xx
 

Jaycey

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@Oruru Welcome to BoneSmart! Can you please tell me the date of your THR and which hip you had replaced? I'll put the information in your signature for you.

I am afraid your only option is to see another surgeon. Until you do, have you tried icing the area? Be sure and put a towel between your skin and any ice pack. I'll leave you our recovery guidelines that include how to ice and elevate. Ice will reduce swelling that is causing the pain.

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
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 this BoneSmart philosophy for sensible post op therapy
5. Here is a week-by-week guide for Activity progression for THRs
6. Access these pages on the website

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.
 
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Oruru

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@Hip4life thank you for your kindness qq I now always have my leg elevated or am sideways, since the later helps me best with less pain,except for walks for food and toilet breaks as it hurts too much to get up/sit and move again. Also sit for big meals as my mom comes to make them and forces me to.
I've been icing as soon as it started, thr first times I could feel relief to the point I'd even go to thr bathroom shortly after, but now it seems to do nothing except cold and tingly feels. The pain and sweeling is constant even with multiple applications a day.

@Izabel Ola! Thank you for answering and kindness c:
I'm in Porto. I honestly have 0 idea who my surgeon was since it was not who was supposed to be and I never saw him again besides in the OR...
I'll be going today to a hip specialist in Hospital de Alfena, Dr. Leite.


@Jaycey thank you for your trouble. As I mentioned it was May the 1st the surgery on the left leg / hip.
This now comes a few days before the 20th.

I'm very blessed for that major post as I've been following and read all their linked threads and helped a lot,what got me through thisnwhole ordeal up until now. However icing no longer helps.
 

Jaycey

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@Oruru Am I correct that you had your surgery just 28 days ago? If so, it is very early days for you. All this is normal post op pain.

Sounds like you are very under medicated for just days out of surgery. Do you have a family doctor you could call to get better pain medication?
 
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Oruru

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Hello, thought I would update about the situation since I came from doctor.

He was a very empathic, kind man. Talked more to me and gave me more advice than all the doctors I saw conbined since my surgery. Also took an x-ray and explained things to me and gave me hope for the future. While still in a lot of pain, inside I am more hopeful.

Diagnosis: ischial bursitis on the lower part AND muscular contracture right above it going to the perineal zone. So a bit of a 2 in 1.

He just said for me to rest but also make sure to walk a lot, ice when in pain ( aka always i guess, ahaha) and try to relax (hard with contracture but will keep the anti inflamatory and valium, so hope it will help at some point). And adviced me to start physiotherapy soon to help with the contracture.
 

Mojo333

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I'm sorry you are struggling...and i am sending all the healing vibes possible your way.
 

Elf1

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Could you maybe try a little bit of heat on the muscle contracture and see if that helps? Maybe take a hot shower if you can stand for that long.
 
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Oruru

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@Mojo333 @Elf1
Thank you very much qq

I've tried hot press before, didnt help much but I read twice a day is good, so imma keep doing it just to see if it works better when long term. And also keep the icing of course c:
 

Layla

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Hello Oruro,
Welcome to BoneSmart. Thanks for joining us. It’s good to read you were able to find a sympathetic ear in the surgeon you met with and receive a diagnosis and advice that will hopefully bring you speedy relief. Please stay in touch so we‘re able to follow your progress offering support and encouragement along the way.
Wishing you comfort and a peaceful weekend. :wave:
@Oruru
 
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Oruru

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Hello, thought I'd update now that I have something more substancial to share besides my own feelings, which haven't been good at all.

So two weeks on anti-inflammatory meds, one week double dosed; ice; hot packs; massaging, not sitting nor laying down fully and... Nothing changed, at all, I actually am worse as it seems to be growing and affecting my sphincter/ ability to evacuate more and more ( even with my softerners and keeping it soft and formed the pain is excrutiating and requires much work).

I went to a private physiatrist today to be evaluated for physiotherapy, as requested by the P. Orto.
For the FIRST TIME I finally had a physical evaluating and she gloved up, put me in a mat, touched me, squeezed me, evaluated me, moved and... She was astounded.
I do NOT have bursitis in any way form or shape (which I kinda knew, I've been reading a lit on it and it didnt match at all) nor contracture.

She kept following my intructions and moving to the most painful areas, asking questions and at the end she said she had absolutly no idea what I had as she never once in her entire carreer er saw anything like it. She said she'd look more into it but I should still start physio so see if it will help and we will be taking notes from there on.
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I think this is the first time someone actually knows what is going on, even if she said she doesnt know now, because she saw exactly how it is looking and exactly what are the spots and areas, so I trust her more to find a real answer for my affliction. And I finally wasn't fed that same line of how everything is sunshine and rainbows and it'll be fine so fast... Hope is great, except when its blind and you keep on suffering with no help.

I've been wondering if it could have anything to do with nerves, since my most afflicted area is the pudendal and inferior cluneal one... But thats just speculation, given the cross betqeen my gluteal area and perineal / genital one.
Depending later on how physio goes, I'll talk to her and see if maybe an MRI with contrast could be an idea to check or exclude such possibilities of nerve block / damage.

Thanks for reading and the support, hope all you keep doing well c:
 

Elf1

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@Oruru wow, sounds like a good visit with the physio even though you don't have a definitive answer quite yet. But this person sounds like someone that will be willing to work with you to try and figure out what's wrong and how to fix it. Please keep us posted with any updates. Wishing you a peaceful weekend.
 

Mojo333

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Truly I can't imagine how hard this must be for you and how frustrating...after all, we do this to get better.
Hard enough to go to the bathroom comfortably after hip surgery without this
I really hope they find a way to alleviate that swelling and pain.
Continued healing hugs coming your way, dear @Oruru
 

CricketHip

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@Oruru Your physio visit was a good one, someone who listened and tried to track the pain for you. Prayers that she can figure something out for you, soon.
I can't imagine how difficult this is for you but try to keep the faith that something will resolve for you.
:console2:
 

Mojo333

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Hope things are at a mild roar.:console2:
Hugs as you await some answers, and RELIEF.
 

Hip4life

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I’m glad your Physio visit went well even if she didn’t have definitive answers. It’s great she will pursue further investigation. It will be interesting to see what turns up. In the meantime, blessings of comfort, hope, and patience to you. ❤
 

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