THR Life After 3 Dislocations & 4 mos in Hospital

[3rd Dislocation]

Wishing all the bone smart people a wondrous and pain free Christmas, filled with many goodies!

@Hip Hip Hooray!, yes it would be much more convenient to move back to Edmonton. I have been thinking of it since summer. It would take a lot of work to get the trailer ready for sale and then the packing too. I have been reading many articles on dislocations, they all focus on revision. also an interesting note, seems week muscles can be a factor. My internal & external rotators are very weak. I couldn't do abduction on my back without help, now I can do it unaided.
I liked your comments about your thin legs, until the hip was repositioned. It gives me hope that he can regain muscle. It also makes me think there is a problem. Maybe we can get a 2 for 1, with side by side hospital beds LOL.
It seems like we have some very tough hips to treat. I had 2 surgeries, plus many other treatments as a child and my hip was never quite fixed. Its why back in 1991, my current surgeon wanted to do an osteotomy. He got me in the end.

Jamie was born with his hip dislocated, so treatment started within 24 hrs. So he too has a lot of intervention. I hope his intervention will be simpler. Its draining juggling 2 peoples hip issues, especially from a distance. It makes it hard being a single parent!
It is beautiful out here, mountains 15 mins away and so quiet, and the air is fresh. The quality of life is much better. The only fly in the ointment is, now not being capable of doing deep steps. Before I could bum up or down the stairs, if I really needed to. I had a few instances of pulling myself up my stairs and crawling on my stomach from my kitchen door to my livingrm couch. It wasn't pretty, but it got the job done. Now I don't have this option as a back up. So I am praying for a miracle. Its funny now I've had my surgery, 3 people who help me a lot will be having their own replacement surgeries. I made sure to tell them about this site! The knowledge here is incredible. Its a shame I didn't do my homework prior to my surgery.

Again wishing everyone, the best Christmas ever with family and friends!

 

[Jaycey]

Again wishing everyone, the best Christmas ever with family and friends!

Back at you @3rd Dislocation !

 

[DeepBreath]

@3rd Dislocation, I hope your Christmas was wonderful!

 

[3rd Dislocation]

Just to update this post for anyone who may find it. On my 1 year anniversary May 2016, every was like Christmas. Each week a different function would return. It started with turning over next week I could have a sit down bath. It was so joyous as I hadn't had one for 2 years. Next was bending very carefully. During the late spring I had put in a 3' X 14' Rock Garden, it was so enjoyable!! My surgeon was so surprised and thrilled at my one year follow up that was a month late. It felt so good to show off, especially since he was retiring that week.

I also paid a visit to my physio team and nurses where I stayed 11 weeks at a rehab hospital. Everyone were amazed as I had left as a wheelchair user. Now I was walking and doing all sorts things, with the wheelchair in the closet! I sent it back this past summer. I had used it 1 day.


I owe a huge thank you to Josephine for her advice and encouragement. I basically just rested from Dec 2015 until mid April. This gave my muscles time to heal. It was a hard time mentally as I tend to overthink everything!! So I want to say even with my spastic hemiplegic CP, all turned out well. Its just taken longer. My surgeon told me at the year review that it actually takes 2 years for the muscles to fully heal. I would have liked to know this at time of surgery.

 

[Jaycey]

@3rd Dislocation What a wonderful update! I am so happy you are now able to get on with life again. Just more proof that given time and patience the healing does go on. Well done!

 

[3rd Dislocation]

@Jaycey Thank you everyone really helped me through a very awful time. I had no information from any source. I was home and couldn't go out due to ice and snow. Medical professionals didn't want to say anything. I learned a lot here and found support. I also learned from other people's stories. I'm looking forward to an even better spring!! Bonesmart is a truly great resource!! Please let the others know it turned out terrific. However what I learned the last 6 months, CP does impact hip replacement surgery. I'm hoping it doesn't have a similar impact on knee replacement which is some time down the road. At least I will have Bonesmart as a resort!!

The one thing that still puzzles me, i cannot do a straight leg raise. Hopefully on the second anniversary. I can't raise my heal 1 mm. I was able to do an inch maybe a bit more. What muscles are involved? I nearly forgot to mention,that I can now walk inside without my crutch and outside up to 40'on flat ground. It's been years since I didn't need to use my crutch. I'm also able to use stairs which I was told I never would do. The past summer I've done all sorts of stairs and esculators.

 

[Pumpkin]

3rd Dislocation,
Happy to hear you have had a good out come after all you have been through.

My surgeon told me at the year review that it actually takes 2 years for the muscles to fully heal.

It would be nice if they would tell people just how long healing takes, they seem to base all the estimates on the outliers who heal faster than most. Never mentioning those of us who take the slow train to recovery.

Hard to say why you cannot do a SLR, if you can do what you want, otherwise have good function, doing a SLR for the sake of doing a SLR is not a priority.

Thanks for the update, wishing you continued healing,

 

[baclectic]

@3rd Dislocation
Between last night and now I just read your entire thread. I'm humbled by all you've gone through and thrilled how well you're doing. God bless you and your son. May your hips continue to prosper, heal and get continually stronger.

I had. THR three months ago and am having a very slow recovery. However I have no steps in my home, and Walmart and a Supermarket are 1/4 mile from my home.

You're Inspiring and give me pause in realizing all the blessings I have.

So glad you're doing so well. All the best.
Barbara in Savannah Ga.
(70 degrees today[emoji3])


Sent from my iPhone using BoneSmart Forum

 

[3rd Dislocation]

@baclectic Hi Barb and thank you, the first year was very rough both physically and mentally that included depression. Mainly because I couldn't get any straight answers and the rehab hospital was setting me up as a wheelchair user. I have CP and have led an active life which included riding horses.

So finding Bonesmart gave me hope and people to talk with and it makes the difference! It's the being patience while the muscles mend that's the hardest. I'm glad my story could give hope. It certainly does get better. I'm amazed at the pain relief that started the 1st day and all that I can do. I got my life back. I was discouraged when told precautions were lifelong. I hope recovery goes easier for you. Sounds like you have beautiful weather and a great location. Today in Alberta it's only 33 F. Just let those muscles heal and don't over do just like Josephine says.

My son goes for hip surgery in March or April. Unfortunately my hunch was correct it is subluxating. So another hip to recover however I know so much more thanks to this site!!

 

[3rd Dislocation]

@Josephine I've run into an issue that I could use some reliable information on.

My 17 yr old son had a PAO March 6, 2017. There were several post op issues with opioid pain meds and urinary retention. They never used a Foley catheter and my son received 10 straight catheterizations and was dizzy from pain meds. All my suggestions were ignored as were his pedatrican's recommends, before he went on holiday.

He had surgery on Tuesday and was finally up on crutches on Friday. Physio was only concerned with getting him to do stairs and a few exercises. At about Friday he was given just plain Tylenol for pain. Sometimes they would let it go 7hrs before I got back to hospital in morning. Jamie was doing well with pain control.

Things were fine when we saw surgeon at 3 week mark. Still wanted healing to happen before any intensive physio.

Last 10 days or so my son has been having random hip pains. it's like a pinching sensation and occurs after doing exercises. I expected pain first 3 weeks, not to start now! He's having trouble with doing a heel slide. He hasn't walked outside, just indoors. It's 66' from his room to the kitchen. I've been carrying things for him, since it's toe touch weight bearing and that darn 'don't bend past 90 degrees' rule.

He's due to see the surgeon May 9, however we need direction now. He's scared that he's going to need another surgery. The other thing, I asked the surgeon about the very noticeable external rotation of his foot. Reply, "this surgery wasn't to fix that ". He never explained what that is. This guy spends 3 mins and offers to show X-ray and you're out the door. So I'm not expecting much info from him. He seems to be more interested in being team surgeon for the football team he played on. We are 4hrs away from specialists and it's very tiring taking the bus and getting no answers. He isn't working with any physio. We are on our own.

Questions:
should we be worried about the random hip pain? How about the external rotation? Can a hip recover from this surgery with limited physio? I'm hoping the answer is yes.

Where can I get reliable information? My son is ADHD and getting very depressed over his hip. He can't raise his heel a bit off his bed. he is still using crutches and is frustrated by everything. I know depression is normal post op.

I'm hoping you can tell what professional I should contact or will it resolve with time. I know with my hip replacement it took me a year to heal from my setbacks. Thank you for any direction you can give! This goes to any mod that responds. I added to my thread, because I couldn't find an appropriate place.

 

[3rd Dislocation]

This is the external rotation I was talking about. Dealing with hip issues is scary, when you don't have all the information. Jamie was born with hip dysplasia. The head of the femur was above the socket. He has had a femoral osteotomy at 22 months. He has pain when trying to get in correct position, especially when lying down on his bed.

 

[Hip Hip Hooray!]

So glad to hear that you are doing so much better. It's great that you are doing so many more things now. Congratulations.

 

[Josephine]

before he went on holiday

Ummm, he's only 6 weeks now so when, exactly, did he go on holiday, with whom and what sort of activities did he do?

The other thing, I asked the surgeon about the very noticeable external rotation of his foot. Reply, "this surgery wasn't to fix that ". He never explained what that is.

And he'd be quite right about that. The PAO was to fix his dyplasic hip. Having the rotation fixed is a whole different surgery and would be mega major on a 17yr old. It's called a derotational osteotomy and one way of doing it looks looks like this

He's having trouble with doing a heel slide.

Heel slides? What on earth for?

Still wanted healing to happen before any intensive physio.

I should think so too. 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. I would strenuously suggest you not let him do this. Ever. At all. Saying no to therapy - am I allowed to?

I'd really like to offer you some structured advice for him but in order to do that, I also need to ask you some questions. Are you willing for me to do that?

I'd also like to know the chronology of his surgery and recovery thus far. What date was he discharged, what date did he go in holiday and for how long?

 

[3rd Dislocation]

@Josephine i kindly appreciate your reply! Hopefully I'm in the right spot, since this is primarily a replacement site?

I'm glad to hear that walking is the best therapy. I must have given the wrong impression, no holiday. I left Jamie April 5 for 36 hrs alone. I wasn't able to convince him to come. He was able to stand/walk 5 minutes max. This worries me as he is seeing 3 specialists over 2½ days. His stamina is still low and I won't be able to find a chair every 5-10 minutes. We leave May 7 and return night of 9th. He is seeing a hand surgeon to consult regarding a lump below L thumb. Local surgeon scared to touch it.

While I was overnight in Edmonton, 4 hrs away by bus. I was getting a cortisone injection in my SI joint, been getting since 2009. My back and now R butt pain has ramped up. Jamie used to help me with a lot around the house. Now I had all the work plus attending to him. Its worn me out!!

Now my son is not the most compliant 17 yr old. I caught him hopping on 1 foot, no crutches, 2 weeks post op, then using 1 crutch. I have been trying to stay on top of him, like police. Last 2 weeks, he did a little walking no crutches to bathroom about 10 feet from bedroom, I caught him several times.

Again I discouraged this. So who knows what he did in 36 hrs, as he had to feed himself. It's a 66' walk from his room to kitchen. We live in a trailer. I filled his room with many non perishables, along with beverages, he likes and made sure he had several phone numbers in case of problems.

Case History: born 8 weeks premature with L femoral head above socket. He was delivered by C section breech. Femoral head was so under developed that it barely showed on X-ray.

At 12hrs old placed in Pavlik harness for 6 weeks without success. We stayed in hospital 3 weeks. Next at 4 months bilateral cast, where at week 4, discovered he had dislocated in the cast. Cast was removed and the lining was blood soaked, he was smelling like rotten meat. Earlier when I'd enquired about the smell, they said don't worry. So it was good at check up the X-ray showed the dislocated hip.

I changed surgeons and just had a wonderful man, who took time to explain and was very concerned. He did a femoral osteotomy at age 22 months. Did follow ups every 2yrs. He did feel another surgery around age 10 years may be needed.

Jamie walked like a ballerina, so age 11 bilateral Achilles tendon releases were done. Corrected the problem beautifully. It was at age 12 I noticed the external rotation. I took him to a physio, who was amazed that Jamie could turn the foot ¾ of the way around. She said it was due to a hyper-mobile joint. This is why I figured this surgery would address the rotation. I forgot to ask the surgeon at the last follow up in 2012 about it. He was satisfied that no more surgery was needed at this time.

Unfortunately this surgeon retired 2yrs ago. So we had to start with a new guy, who is a generalist and had his practice about 6yrs. He's rated #3 for the city the surgery was done in.

Hoping he's good, since he's the surgeon to a pro football team. You need to be on point and know what questions to ask, otherwise he's gone. Sometimes I didn't realize that certain questions needed to be raised , since I'm relying on his expertise. It's all about knowing the correct questions.

Now that I became mobile May 2016, we both are making rounds of specialists. He started having hip pain, while working lifting milk crates at a local grocery store, while I was in hospital with my hip 2015. This is why I had a feeling another surgery was needed.

So I managed to get him into a surgeon for assessment September 2016. It's after this surgery that I again noticed the external rotation. What happens if left uncorrected? I know reply will only be a guess. That seems like another intense surgery for the rotation.

I'm hoping this one will turn out well in a year. This surgeon was up front and said a year for full recovery.

My son worries after seeing the difference in how my rehab went and the lack of information both pre and post op we were given for his.

My pre-op had a 1hr teaching class, with a video. Then you took home a 40 page book. Then you met with both OT and physio and with an anesthesiologist and your surgeon again. You were examined by an internal med dr and had X-ray done again, even if they were only 6 months old. Jamie attended my session with me for the teaching hour.

His pre-op had a little pamphlet. Any questions we asked, most replies were you can ask morning of surgery. So we've been feeling like being in the dark. So we didn't think it was a really big surgery, pre op was 45 minutes with a nurse and a physio.

I'm pleased that walking is best. He's only walking inside as, still icy. We are still getting huge snow falls. It's been very strange weather!!

The surgery Mar 6 in Edmonton, discharged on 12 and flown to Hinton hospital and discharged home on 15 home no physio follow up. He had surgery 7am Tuesday and wasn't up on crutches until Friday, when they gave him regular Tylenol.

Meds were changed each day morphine Injection , then 10 mg Percocet pills, then Tramadol all caused urinary retention. Friday he was changed to plain Tylenol, while everyone in his room was on diluadid.

Our GP later said of course opioids can cause urinary retention. This bothers me that nurses and surgeon were so slow to figure it out. Actually my son blasted everyone, saying he figured it out. Each day because of light headedness they would switch meds.

My son is telling them it's causing urinary issues. Resulting in 10 catheterizations as they wouldn't use a Foley. So once switched to Tylenol no light headedness and bladder function restored and he could get up and walk.

They went against my wishes and never put a Foley in during surgery. So the first few week was very stressful. I slept 2 nights in a chair by his bed. The second time was because, we were waiting for transfer to home hospital. They transfer 24hrs, we were given 20 minutes to get ready. It's a very unorganized way of transferring patients.

However our GP was away. Jamie convinced the cover off Dr to send him home. His stay was supposed to be in longer to make it easier for me and let my body recover. He never took pain meds after Mar 15. Until 10 days ago when random pinching started. It's a random pinching in the butt area. His words are like "my bones are biting me". I had him take Naproxen that was prescribed. He took it once daily, for a total of 3 times in last 10 days.

Staples removed by our GP mar 23. Seen surgeon at 3 weeks on Mar 28. Next appointment May 9.

So between 2 hospitals 8 days total. The first 3 weeks were hell, with both of us on crutches. I use one when outside and occasionally in the house for support when I'm tired. So hopefully this gives you enough background.

I can't wait until we can get back to more normal. My bones and muscles are protesting. I've had to up my pain meds just to cope. It's just the 2 of us and I don't drive! Again thanks for for the information and support.

Hopefully we can leave the other surgery for a long while, without too much consequence. However I know, when body mechanics are out, problems arise eventually.

 

[3rd Dislocation]

It's been a learning curve. Too bad they couldn't have combined the surgeries. Trying to get a 17 yr old to understand that healing takes time and to not break precautions is tiresome!

From what I read this will only delay a hip replacement for 20-30 yrs, it doesn't sound like much at age 17. Is this about right?

The cartilage and labrum are both in excellent condition. I made a point of asking. I thankfully learned a lot about them here. When I was on the site, I did plenty of reading.

 

[Josephine]

Hopefully I'm in the right spot, since this is primarily a replacement site?

Sure you are. We often get members talking about things that aren't THR related.

Now my son is not the most compliant 17 yr old. I caught him hopping on 1 foot, no crutches, 2 weeks post op, then using 1 crutch.

That's okay. Don't obsess about it. As long as he's not weight bearing.

Cast was removed and the lining was blood soaked, he was smelling like rotten meat. Earlier when I'd enquired about the smell, they said don't worry.

Speaking as one who always took charge when babes had their hip spicas changed, I can promise you that ALL smell like that! I always insisted the surgeon waited while I got water, soap and towel so I could give baby a good wash! (They'd be under anaesthetic at the time!)

She said it was due to a hyper-mobile joint. This is why I figured this surgery would address the rotation.

I doubt it. PTs often get these things wrong. The rotation was caused when the surgeon did the PAO and rotated the top of the femur to fit into the new socket.

So we had to start with a new guy, who is a generalist and had his practice about 6yrs. He's rated #3 for the city the surgery was done in. Hoping he's good, since he's the surgeon to a pro football team.

A generalist? He is not the right surgeon to deal with your son. You need an orthopaedic surgeon who has an interest in "arthritis in the young adult".

What happens if left uncorrected?

He will gradually get more and worse pain and arthritis.

That seems like another intense surgery for the rotation.

Fraid so.

My son worries after seeing the difference in how my rehab went and the lack of information both pre and post op we were given for his.

Well the difference is that there are literally thousands of hip replacements done and so it pays the hospitals to have joint days and booklets. But his surgery was NOT like yours in any way shape or form. And since there are so few done, that's why no booklets or workshops.

Resulting in 10 catheterizations as they wouldn't use a Foley. They went against my wishes and never put a Foley in during surgery.

Most surgeons are very reluctant to use indwelling catheters at all much less on youngsters. This is because a) they can cause urinary tract infections and b) can result in bladder function issues post-op.

His words are like "my bones are biting me".

That is a VERY good description!

From what I read this will only delay a hip replacement for 20-30 yrs, it doesn't sound like much at age 17. Is this about right?

No, if he needs a hip replacement now, he needs it now. 20-30 years with a painful hip is like a life sentence. You of all people should know that!

The cartilage and labrum are both in excellent condition. I made a point of asking.

Who did you ask? Cartilage health is one thing but the labrum has nothing whatsoever to do with this or general arthritis in the hip joint.

 

[3rd Dislocation]

@Josephine, again thanks for all the replies. Looks like we have hips that just keep on giving. Between Jamie and I, we could have fun with all the metal in us and going through security!

I suspected you were going to say that the external rotation will eventually cause arthritis.

When I read dr reviews by his patients, is when I learned he does various limbs. I was told by my physiatrist that our surgeon likes young hips. He was recommended by the children's hospital in our capital.

When I called to see if they'd take my son, I was told in 2 months he'd be too old at 17. So they referred me to current Ortho. I had tried to get back with our very 1st surgeon that works at the children's hospital, even though I had switched from him, as he was a peds ortho. It's hard to find a peds surgeon. It's too bad our second ortho retired!!

Question: Would recovery time be the same for the rotational surgery? Is it non weight bearing?

I asked the surgeon about cartilage and labrium, I figured he had a birds eye view, since he was in the area. I asked trying to foresee any other potential issues.

He has been diagnosed with hyper mobility in L shoulder and L knee cap. Seems he inherited that too from me. I had no idea they were hereditary. He saw my physiatrist's partner, as ortho only wanted to deal with hip. My son was also having shoulder and knee pain. Both physiatrists are very good in their field. My son's physiatrist teaches at our university.

I appreciate your reply that I'm in the right area. I trust the opinions of bonesmart staff and recommend it to whoever has replacements coming up!


I know tomorrow is only 8 weeks, however it has seemed like forever, especially with the unseasonably bad weather!!This has been so draining on both of us! May 30,2016- May 30 2017 will make 20 trips into our capital just to see specialists for the both of us. We have appointments booked until oct, with specialists. Some trips we see 3 separate people.

I let our health slide 4 yrs, now we are playing catchup! Once Jamie turns 18 in Dec, I lose access to some excellent services, so have been trying to cram a lot into this last year. Children's health care is usually better than adults!!


I have a question pertaining to my R butt muscles. I'm having an almost constant pain in this region. It feels like the entire gluteal area.

I had my every 3 month Cortisone SI shot April 6. This time it seemed to aggravate the situation more, especially the first 2 weeks. Usually it's magic in a needle.

Since Jamie's surgery I have full responsibility for him and the regular household chores. My physiatrist has been urging me to slow down last 14 yrs! As a single mom that's impossible.

Question: do you think this will resolve, once Jamie can share the work load and take care of his needs, once he's off crutches? My R side has always been my strong side, never causing issues. It's done most of the work for 54 yrs.

All my pain is usually reserved for the hemiplegic L side. I do make sure I rest when tired, I take several breaks. The one other difference is I don't use my crutch in the house. I use it on my R for balance and upper body support. A cane doesn't cut it for me.

The other issue that has arisen past year is major R foot pain if on feet longer than 45 mins, on bottom middle and it feels like my toes glue together. I'm getting an orthic insert end of May and custom shoes.
Wondering if this also could be adding to butt pain?
I walk barefoot inside. I hate shoes! Hopefully this will give you enough background to make an educated response.
Even the rub I use with Methyl Salicylate 21%,Camphor 4%, Menth3%, Eucalyptus oil .75% doesn't help anymore. I do love the smell.

 

[Josephine]

When I read dr reviews by his patients, is when I learned he does various limbs. I was told by my physiatrist that our surgeon likes young hips. He was recommended by the children's hospital in our capital. When I called to see if they'd take my son, I was told in 2 months he'd be too old at 17. So they referred me to current Ortho. It's hard to find a peds surgeon

Yes, there is a big difference between a regular hip surgeon who has an interest in "arthritis in the young adult" and a paediatric surgeon. The former considers the ages of 35-40 to be young!

Question: Would recovery time be the same for the rotational surgery? Is it non weight bearing?

Sorry, recovery time for what?

Seems he inherited that too from me. I had no idea they were hereditary.

It's a genetic disorder and called Ehlers-Danlos syndrome.

I have a question pertaining to my R butt muscles. I'm having an almost constant pain in this region.

Sounds like Piriformis syndrome to me!

Question: do you think this will resolve, once Jamie can share the work load and take care of his needs, once he's off crutches?

I can't possibly answer that - I left my crystal ball at home!

 

[3rd Dislocation]

@Josephine interesting info about ehlers-Danlos, makes since now why the physiatrist suggested that his physio team had the expertise to treat the shoulder and knee. He did mention that they were inherited, however never gave a name. He didn't think our 24 bed hospital would have qualified physio. I'm definitely going to read more on it. The little I read is making sense. As there's a few more issues going on that fit.

I will also read about Piriformis on this site.

I was wondering about recovery from the derotational surgery?

Information is power, I was thinking my hyper mobile joints on the L were part of my CP. So I was surprised when Jamie started having the same issues at 15 and also on the L. Which is around the same age, my shoulder and knee started giving trouble.
I knew about hip dysplasia being passed on. Now I have something to ask our peditrican about on the 8th.

Jamie didn't see any doctors for 4 yrs and now several conditions have emerged. Sometimes I feel like I'm going in circles. I've got some reading to do.

Again thank you for your replies. I wish I had a crystal ball!

 

[3rd Dislocation]

Wow I've been doing some more reading on Ehlers-Danlos and many of the symptoms apply to me. I can do the finger movements and the stretchy skin. I can also see my veins and capillaries, always wondered why I didn't see them on others. I wake up with bruises. During my hospital stay for my hip replacement, my legs were almost solid bruises, it concerned my physio. I was only on an aspirin as a blood thinner for a short while.
My toes can do weird movements too and I can stand on my left ankle. I even have the scoliosis, and really bad hyper extended knee.

I just figured all of this stuff was somehow related to my CP, so life carried on. The funny part, I've been going to a rehab hospital since 1965 and under care of a number of specialists, this has never come up! As a kid I was trotted out for grand rounds, where I was poked and prodded.

So end of May I will ask my physiatrist about this, when I see him. My son sees both his peditrican and ortho on May 8th, this shall be interesting!