THR Life After 3 Dislocations & 4 mos in Hospital

@3rd Dislocation ,, I just read through your thread and my first inclination is to reach out and give you a hug! You have been through an ordeal! The lack of concern from your Dr's is heartbreaking to hear about.
I have no advice or anything but will be pulling for you to get the answers and solutions needed for a good recovery.
If I lived closer to you I would happily drive you to your appointments! For real.

Hang in there, and heres hoping the wonderful people on this forum can help you get to the bottom of the problem.

:SUNsmile:
 
@CricketHip, thank you for the kind words and thoughts! It was a draining time I spent at the local hospital, I went through 4 GPs, each time one went on holidays, I would get past to the next. No one had encountered a case like me, so they relied on what info I could provide them. It was like an episode of the keystone cops. See my GP died shortly after I had my surgery. So I had no local doctor, and no one really wanted to add me as a patient. My Edmonton rehab PT, wouldn't go on record, after working with me daily for 10 weeks. Mainly because I had dislocated again and it was seen as a big change.

Don't get me started on the bazar roommates, we had 18 inches between beds and I was stuck in my room mainly after dislocating. So much happened I could fill a book. I learned to live out of a suitcase and get by with minimal items. I learned I really didn't need to many items for basic survival. That fresh berries and pudding are delectable treats. Also frozen toast and microwaved pancakes are gross. Also that hospital eggs bounce. one day my roommate did it for fun.

This site and its member have restored my hope that the restrictions aren't forever! Also I don't have to do this alone. I will be able to compare notes with @redduke and his journey. The main thing is knowing the restrictions aren't forever. If this was true, I was thinking I had made a bad choice. I've also reduced my narcotics by 75%, which is a huge gain. The hip is almost pain free, it just needs some strength. I have gained much wisdom through this journey. Ive also had a ton of melt downs, which is rather embarrassing. I have learned when its ill advised to waste energy pursuing something. As they say let go and let God. Looks like I cant type tonight, I've edited this 3 Xs.
 
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I have found 6 people that have experienced dislocations this year and Im getting busy reading there threads. One person experienced 6 dislocations, so I am hoping to learn from others experiences. I may be a bit slow responding to posts until I catch up with the reading. So far its done wonders to reduce my stress. Just really hoping I don't need a revision, as I'm mentally wore out, just cant do anymore extended hospital stays.
 
I had a response from Josephine on another thread regarding comments I left about my dislocations and surgeons response. Mainly it boils down to what I knew intuitively, but don't want to acknowledge. A possible misaligned hip, coupled with false info about successful revisions. When I talk with medical staff, all I hear is, your surgeon really doesn't want to operate on you again. I must be bad for business lol! As he has done a good job of scaring me away from another surgery, heck encounters too! Last 2 visits I left in tears, with no concrete answers.

When I arrived by ambulance, after 2nd 3rd dislocation, I asked where I was going to be dumped. Okay an unfortunate word choice, I was scared and frustrated. I had started the day with an ambulance trip to emerg, coupled with 2 dislocations. later they shipped me by ambulance for my follow up with OS, that just happened to be that afternoon. I truly didn't know if it was a one way trip. Was I going to have to find my own way home. Was I going to go back home or be admitted to hospital in Edmonton or Hinton. This would leave my son alone again! I was terrified, I was 4 hrs by bus away from home.

In my experience the ambulance takes you to hospital, they don't give a return trip. It happened to me age 23, I was living in a small town about 1 hr away. The local hospital sent me by ambulance to Edmonton emerg, they treated me and let me go. I was lucky there was a bus route direct to my aunts house, as I didn't know the city well at the time. I had to find my own way home. So I was worried it would happen again. Plus I didn't have my credit card on me.

I was told 6 weeks with hip flexed, come back in 6 weeks, and that I needed an attitude adjustment. As lots has been done for me regarding rehab and hospital stays. It was like a slap in the face. I had worked hard in rehab and had been up beat after dealing with all that had been going on! When I had started to mention the strange movements in the hip the night before, surgeon replied I don't want to hear about it. The next visit wasn't much better, when I started asking questions. Both times no x ray or physical exam. Which I found rather strange. Even the EMT thought the surgeon rather rude.

I was supposed to be back begin of Dec., but its winter, difficult to get a ride in, and I've no wish to get talked down to again. He didn't even comment on the 1st dislocation, it came as a surprise to him. I figured he knew about it, as it was his resident that did the closed reduction, 5 days post op. He saw me the next day after I figured it was dislocated, said nothing and let me get transferred 2 hrs later to the rehab hospital, which x rayed 30 hrs later. So I dislocated Sunday 10.00am and got an X ray Tues 4pm and reduced at 8.30Pm. I don't have good fortune dealing with the medical profession on this surgery. Other surgeries have been trouble free with not even a hiccup, especially my back one. So I was expecting the same.

So I have lost my faith in the medical profession. My GP is new and I don't have a good rapport with her yet. As previous GP died around the time of my surgery. So this has taken a lot out of me mentally. Plus I don't drive just adds to issues of getting to medical appointments 4 hrs away. I can say I have gotten comfortable with going under, its not as traumatic anymore.

The thought of starting this all over, will be a hard decision!! I had been led to believe the issue was my partial muscle paralysis. It sort of made sense to me. Now I feel like a mushroom, always in the dark. There was no discussion on type of implant or approach. I did find out last visit it has a lifespan of 15 yrs so far, and no problem to have an MRI in the future. So vent is over.

Two nights ago my son was kind and treated me to a hot foot bath. It was so relaxing to soak me ankles in hot water. I'm scared to lift my leg into the tub, I do have a shower seat. However, my tub is very high to lift leg over edge. I've been doing the sponge bath, not satisfying. I was building up courage to try the tub, but if I have a misaligned hip better safe than sorry. I've gotten to know one EMT very well over 6 trips. What do I want for Christmas, a bath would be nice. The simple pleasures in life lol!

I still have a strange pain parallel to my scar when I do some movements, sort of burning and pulling. Still cant do a leg raise, its like dead. Prior to surgery I could get 1-2 inch raise. I wonder if this is normal 7months out. Or do I need to learn to live with it.
 
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When I talk with medical staff, all I hear is, your surgeon really doesn't want to operate on you again. When I had started to mention the strange movements in the hip the night before, surgeon replied I don't want to hear about it.
It's becoming more and more clear to me that this surgeon is not and experienced revision surgeon. He clearly doesn't want to touch you with a barge pole! But his lack of experience doesn't mean your problem is unsolvable. In the right hands, things can be improved and made more stable.

I think you inability to do an SLR could well be due to your hemiplegia so that might not be included. But you do need to find a really good revision surgeon, there's no doubt about that. Can you do that?
 
@3rd Dislocation, just sending out some hugs and support, friend. My goodness, the journey you have travelled! It would have brought a lesser person to their knees.
Josephine is SO right. Your surgeon is not equipped to deal with anything but the simplest procedures. I have faith you can get the help you need and be on your way to a bright future. :)
 
Thanks Deep, when I look at the people who I've met in rehab dealing with infections, or one with multiple ortho surgeries within a yr, they are the strong ones!! It has brought me to my knees a couple times. It's the not knowing causing it.

I'm so conflicted, my gut says a revision is right. My mind says run away, be happy with the pain relief. It's a win of sorts. Being a single parent, it's a huge Pre op prep just getting to the ready stage. I really wish I had a time machine and could reattach my old hip! My surgeon is nearing retirement, maybe he's slipping a bit. I'm not sure where to go to get Alberta surgeon info. The one website rates my dr as 10 of 123. Most patients have been happy. I just had a premonition this was going to bad at the Pre op stage. Well at least I have the winter to do research.

Are people having extra hair loss, mine is coming out in clumps, plus a perm I had in July lasted about 6 weeks. It would be interesting to hear, if anyone else has this issue.
 
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I'm so conflicted, my gut says a revision is right. My mind says run away, be happy with the pain relief.
You need to remember that it's unlikely your hip will remain as it is. It's very likely to get worse, more painful and difficult to live with. Having a revision will sort that out and give you a hip you can forget! In other words, you may not have the option to 'be happy with the pain relief'. So much better to get it done now. That's my two cents.
 
@Josephine, I hear what you are saying. Could you give me a list of questions I should be asking. Prior to this surgery I just signed the consent form. I've never had post op complications before. My confidence is shot after this experience and the nightmare cases I saw at the rehab hospital. Most patients were having repeat surgeries within weeks or months, I was on a ortho unit. Don't get me started on all the septic knees and picc lines. It was just terrifying, I've decided no knee surgery for me. Luckily the hyper extending L knee is only moderate OA. Im starting to wonder if there's something wrong in our hospital system. So many repeat operations during my 10 week stay, most due to infection or loose screws. I don't know if we even have surgeons that specialize in revisions.

Plus most hip surgeons work out of my surgeons office, I had been referred to another surgeon in his office, but somehow got rerouted. His online line reviews look great. The other thing Alberta has streamlined the process by having 2-3 clinic that the surgeries are routed through, as they used an interdisplinary team approach. What do I say to my case manager. How do you break up with your surgeon.

I am sure they think I am non complaint as I didn't book further physio or a Dec follow up. I do the exercises, his physio gave me at home. Id gladly do a phone consult. Our hospital offers video conferencing. I am put off because the follow ups, there's no physical hands on evaluation, no x-ray, like at the 6 week follow up.

I'm still choked by my surgeon transferring me after the 1st dislocation with no x-ray to the rehab hospital, those toe raises did me in! I told him about the clunk and roll. I didn't get the x ray because I couldn't walk across the room to the too high stretcher, so I am listed as refusing an x ray, even after explaining the issue.

Next question how can a person walk with an anterior dislocation. I had got to my bed and had to get up to go to the washroom several times before getting it reduced. I have never felt pain like that in my life. I read on another forum someone had 2 revisions and still dislocated with them.

How much could partial paralysis and the 2 osteotomies be contributing to this. The paralysis is being suggested by some rehab professionals as the cause, your thoughts. I used to ride horses, climb into transport trucks and hike, pick ground level berries, so the partial paralysis didn't hamper me much, until the back issues raised their head. Then an explanation given for my 3rd dislocation was because I had swelling from the prior dislocation 1.5 hrs prior. I was lying flat on exam table and barely raised my butt so nurse could slide my pants on. She told me they had quite the time getting it in. No x ray was taken of those dislocations. Plus my surgeon hasn't done any since my 6 week follow up.

What should happen during a follow up appointment. We just talk, with my case manager and their PT attending. In the old day my peds ortho would make me do a walk, he would them do a hands on physical range of movement. It was very physical. I was blessed when he retired as a surgeon I was given all my records. Hes still around doing insurance claims. I had stopped by the office to say hi and was given my files. He had done all but my last 2 ortho surgeries.

Your comments are greatly appreciated, I hate not knowing. I will look into a revision, just don't know if theres a rock star in Edmonton. Our surgery wait times average 32 weeks after seeing a surgeon. It can be up to a yr to see certain surgeons. Do you have any info on Edmonton Ab hip surgeons. My surgeon is dr. Greg O Connor.

The great thing is I'm not paranoid of going under anymore, propofal is my friend! I used to freak out being put under, a reason I delayed having hip surgery since 1991. Having the reductions have cured that, as there was no one around to be with me. Propofal truly amazing, its like falling asleep in your own bed. There's no recall of much, which is freaky. My first reduction, I didn't even know it was done! I was still waiting for it to work, when sent to x ray. I had argued with the tech, I was still waiting for the reduction. She humoured me and called to check. Boy did I feel like an idiot.

I have photos of pre op hip, surgery planning, 1st dislocation, post dislocation. I had a nice OT at the rehab hospital, she showed me all my x rays even of my back. It was cool she let me use my iPhone to take photos. I know who has their skeletal x rays on their ph. My sons ortho gave me a disc with his hip x rays.

Which brings me to another question. My son was gifted with my beautiful hips.
He turned 16 on the 2nd. He's been having random hip pain and sore legs since this summer. Heavy lifting really aggravates it. I saw him stand up, try to step and fall with pain. The previous day he had been stocking the dairy case at work.
His history, pavlik harness from birth for 6 weeks, followed by closed reduction spica cast at 4 months, for 4 weeks. He managed to dislocate in the cast, so ended casting. Then at 18 months, under a different ortho a femoral osteotomy was done. Followed by tendon releases for both legs age 11, he walked like a ballerina. Havent seen ortho since 2012.

Questions are could he be needing further surgery, and are the bones finished growing. The surgeon was happy with surgical outcomes. Jamie had been born with the ball above the socket L hip. It wasn't even calcifying until the first surgery. Now there's a surgeon, who has a brilliant bedside manner, thorough explanations, very caring, even about my conditions! I wish he would work on adult hips!

So I was hoping to work on Jamie's issues this new year. We had to juggle his surgery with my back surgery in 2010, as he was supposed to have another hip surgery. I am worried I missed the benefit of growing bones. Also is this going to set him up for early OA as an adult. Last question would he benefit from PT. His leg is thinner and he does limp slightly. Why would that leg be thinner. I thought my leg thinness, was due to CP.

I worry about his hips ending up like mine. He is also very seditary. Any advice will be taken seriously. Sometimes I feel overwhelmed by all this or what comes first. Thanks again!!

So I've got to consider who to look after first! The problem is getting to the city to see the specialist. I have been reading most of the articles here, even the video. I cannot eat steak now, after seeing the video. I have great respect for the OR teams, its truly gross.
 
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Wow you have had some time haven't you? I don't mean any harm or judgement, but it sounds like your heath care is horrible. Have you thought of coming to the US? I'm sure it must be expensive but if you can I think you should. The Hospital for Special Surgery in Manhattan is doing some unbelievable things. I will look into hardship cases and things like for you and let you know what I find. There are good doctors and bad of course, that is why it took me so long. Especially after going through what I did as a child. And being told how blessed I was. Hips and Knees are done so often here it's crazy. That too is what made me wait so long. My husband perfect example. He was a crane operator. The GC on the job hired them out to remove contaminate soil. They didn't cover a whole in the ground with a barrel and he walked feel into it. The had his meniscus done, that led to a TKR. The doctor didn't cement it in and it was lose the bone didn't grow. A year later he had to have it redone. A year later it was found not to be lined up correctly and had to have it done yet again. He has rods in the top and bottom. The last doctor was excellent and did what he could. He is still in pain and at 51 has an 85 yr old knee. He can never return to work, has constant pain and limps. I really am blessed to have waiting and searched before settling on a surgeon. I hope and pray that you can one day be pain free as well. I am going to look into getting you some help. I live an hour from NYC and live in an apt now. I lived in homes with steps, now I don't have any. If I had room I'd have you stay here. We sold our house because he is unable to work anymore, student loans three daughters weddings ect all because of a whole in the ground :( But other than that we try to always look at the blessings. Let me know if coming to NY is something you would like to pursue.
 
I had a left hip revision in April 2015 with Dr. Guy Lavoie in Edmonton. Without going into major detail, my hip was a mess as I was a recipient of a Metal on Metal hip approximately 9 years ago. It was a complex failure and complex revision. Let me just say that Dr. Guy Lavoie has given me back my life. I'm pain free and happily moving on with my life. He is at the hip and knee clinic in Edmonton. I have been informed he does a lot of revisions. I've been told his bedside manner can be a little abrupt, but he has been a perfect gentleman in his dealings with me.
 
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Also I'm so sorry to hear about your son. I have a daughter named Jayme :) I'm thinking his leg maybe thinner due to muscle tone? I would have him do what he can on working the muscles. My mother had a few back surgeries and due to her lack of PT she lost the muscle in her calf. It atrophied. So she limped. I am working on finding you a surgeon here in the US that could help you. No one should have to deal with what you have been through your a strong woman.
 
My son was gifted with my hips. He turned 16 on the 2nd. Questions are could he be needing further surgery, and are the bones finished growing. Also is this going to set him up for early OA as an adult. 2010 he was supposed to have another hip surgery
Given his recent history I'd say yes he sounds like he will need some surgery.
16 is a funny age - he may or may not have finished growing. A doctor can tel that from an plain xray.
There is a bit risk that cases of congenital dislocation of hips that they could develop arthritis in the affected hip in adulthood.
What surgery was he scheduled to have in 2010?
Last question would he benefit from PT His leg is thinner and he does limp slightly. Why would that leg be thinner.
Providing it doesn't cause him pain, exercises could help build muscle bulk and strength but walking is often the most effective way to achieve this.
 
@MissC, Welcome and thank you for your posts, I have heard of Dr Lavoie years ago. Its great to hear he does complicated revisions. I hope your new hip is wonderful! Did you also have lifetime precautions. Its what really bothers me. At 53, I cant get my head around not bending past 90 degrees for lifetime. No one at Northgate told me this prior to surgery. Had I heard lifetime, I probably would of said see you.

I also wonder how to pursue switching surgeon, since they all work through Northgate. I was original suppose to see Dr Masson, hes in same office as Dr. O Conner, someone found my old file from 1991. I'm not to thrilled with the Alberta Hip & knee clinic. They made me come in to redo the pre op clinic, as it was 6 months, since they saw me for the first pre op class. I mean the medical tests & x rays could of been update in Hinton, and posted on Health net. During the interview with the case manager, Stella only changed 2 lines on my case history. I felt it was a waste of a trip. They really need to set up a video link for out of town people. Then I had to make another trip in just to see the anestitist, as he was supposed to see me when I came for the Pre op class. My issue is transportation, I could barely do the stairs to get on the bus, now I cant do bus stairs at all. Plus doing a day trip with a driver is torture on my back. I used to stay over night and this way, I get rested and sometimes do my cortisone injections too.

I would love to hear more on your experience with your surgeon, I am so glad you responded. It is comforting to connect with other Edmontonians, who know the system. I was talking last night with a gal, who's bilateral hips, and she too is under the impression of lifetime restrictions. Also went through the clinic and is in the dark re approach and restrictions. Hers was around April and she still has swelling in one leg and wearing the stocking, and following restrictions. She was amazed at what I told her what people are doing post surgery.

I'm still trying to get my head around needing a revision, it just seems like a long process, and another Glenrose stay. I know with our system this could take some time. Hopefully the leg will stay stable, until I can see oneone else. It would be an issue, if I lived in the city. Its a project for the new year.

I wish it was revised after the 1st dislocation, they were talking about whether or not further surgery was needed . This has been so mishandled. At least the hip is pretty much pain free at the moment, and im in doors for the winter.
 
My experience with the Edmonton Hip and Knee clinic has been quite positive. I don't have any complaints. I have had a lot of dealings with them as this latest surgery was the third on my left hip. I have found the doctors and staff friendly and helpful. I am grateful that I live in the area and don't have a long commute to the Northgate clinic. Sometimes I have just met with the doctors at the Misericordia hospital at their outpatient clinic which is even closer for me when it's just a quick check or discussion about a concern.
As far as the restrictions, I think every case is different. Because my hip has been opened up three times, the doctor had me wear the hip (abduction) brace for three months and stay on two crutches with absolutely no physio during that time. He weaned me off the brace and sent me to physio and I've had absolutely no issues since. He did insist that I follow the restrictions for awhile longer as this is a revision and the muscles were left quite weak. I do break the 90 degree rule once in awhile, but for the most part I stick to the restrictions (remember I've had a prosthetic hip for 9 years). I'm so used to not crossing my legs and avoiding pivoting that I don't even think about it anymore.
My hip story is very long, and I'm not going to derail your thread with it, but this new hip of mine is fantastic and I'm very happy with it and with Dr. Lavoie.
 
Hi, MissC, They are a friendly bunch, they just couldn't answer any of my questions, after the July dislocations. My surgeon was very pleasant and talkative during my 6 week follow up, even found a suture that caused a staph infection. Things were looking great at the June 9 appointment. I really didn't too much about the first dislocation, I was angry about the setback. I figured I would be home in 2 weeks. Things were going better than I expected until I dislocated. Then things just got bizarre. The Glenrose OT, immediately started on Grants for a Wheelchair and lift, as I had problems with stairs into my manufactured home. Then they refused to teach me stairs. Telling me I couldn't go home until I had the lift installed. There were delays with paperwork, as I needed to do my taxes to be eligible for the grants.

I was devastated I had walked in and done several appointments pre op. To me the surgery was so I could walk pain free and have a normal life, for me that is. Then to have the surgery and told no going home until I have lift installed. Then finding out at the 8 week mark, lifetime restrictions, was the icing on the cake. Now had people had said for a year, there's something to look forward to. As I am thinking about having a bath, getting into the cupboards, and next summer getting under my house, to sort out stored stuff, and of course gardening and blueberry picking. I have relied too much already on my kid. The only rule I'm concerned with is the bending. I'm not a leg crosser and always wear flat shoes. I want to be able to kneel and sit on a step stool.

Like you I had 2 previous hip surgeries with plate and pins on this hip, so I don't know if it effected anything. The surgeon never mentioned my circumstances would a challenge. I was told Id be sent to Glenrose for therapy. When I did ask the OT PT said to ask the Glenrose staff about any concerns.

The nice thing, a new set of stairs, gives me total freedom to come and go. Where before I couldn't leave the house, as the stairs were a huge impediment. Plus I didn't need the lift. I've used the wheelchair twice. I'm able to do 2.5 hrs at the grocery store, when there's no snow. These are all huge accomplishments. The real fly in the ointment is doing deep stairs. I was told in rehab Id never be able to do stairs again. Which is something I wouldn't accept.

I just don't know how to switch doctors, when they all work through the same facility. Will another guy take me with my issues. I just feel overwhelmed, as I will also need to see an eye specialist in Edm. My eye doctor is worried about the thinning of the R optic nerve, as I'm legally blind in my L eye. My city medical appointments are starting to add up. I also forgot the botox injections in L calf, so my foot is flat and I can get a shoe on.

When I take the bus in I can sometimes combine medical appointments. So I need this freedom back. I also wore the hip brace for 8 weeks, 24 hrs a day, it wasn't allowed off, even for a shower. Like you I just did walking with it. My leg was shaky weak when the clinic removed it. I barely was able to walk the length of the mall, when it came off. As I had to walk to the elevator by food court to get to ground level, and back as friend had parked by Walmart side. I cannot use an escalator, like I used to. I feel I have lost a few basic functions that I used to have.
I had really hoped I was done with this, as I am just totally spent. Its been longer than I ever expected. Then if my son needs surgery, this will just complicate matters. We seem to take turns with surgery. I would need to get his done prior to eighteen, so the expenses of traveling for his needs are covered.

I have little glitches occasionally while walking or lying down. I'm not certain if its muscle sliding over each other. It does give me a temporary scarce when it occurs. I hoping the scarring taking time is true.
I was told both times that it would take 6 weeks for the muscles to scar down, and hold the joint. I guess time will tell. I just need to be more patient.
 
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@3rd Dislocation, re: how to break up with your surgeon. That is difficult. You sound like the kind of person who hates to confront or to offend anyone.
However, this is your health and your future. You deserve to get the best care available and to be listened to, not to be ignored and told to 'be quiet' and labeled 'non-compliant'.
No surgeon should ever treat a patient like that. Their job is to heal. If they cannot, for whatever reason, bring about the best outcome possible, then they should refer you somebody who can. Perhaps he is just getting to a point where he is tired and not up to certain challenges. Fair enough, but that is not your issue.
If you need to go to another surgeon in his office, just march in there with your head held high. You haven't done anything wrong. You need to be your own best advocate and to never be apologetic for doing so. Every question and concern deserves an answer and if you have to be the 'squeaky wheel' to get them, then get to squeakin', Friend. It sounds to me like you need a 'take no prisoners' attitude. I know this is difficult because I don't like to make waves either, but you've been through enough...period. It's time for you to have good care and a revision so you can regain the life you deserve.
Tons of good thoughts and support coming your way. :flwrysmile:
 
Just wanted to wish you a Merry Christmas, @3rd Dislocation. I was reading about how your son's leg got thinner. Both of mine did, too. The inner thigh muscles just wasted away. My legs were just skin and bones. (and very bow legged.) It helped me to use the machines at the gym, but I just couldn't build the muscles in my thighs until they position of the ball in the socket was corrected. (After the surgery, my legs returned to normal. What a difference!) I found swimming and doing the machines that didn't aggravate my hip very helpful before the operation.

It sounds like you're getting some good advice here. I hope everything works out for you with a top revision surgeon (if that's what you choose,) and a bright future. I always get the impression when I read your posts that a change in location would help.
 

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