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Shocked & Surprised!

Discussion in 'Hip Replacement Pre-Op Area' started by klalota, Mar 14, 2012.

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  1. klalota

    klalota Junior Member

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    Hi all,

    I'm 47, F in the States. I've endured knee pain for years, progressively getting worse. I'm now at the point I avoid climbing stairs and have to use a cane to get around (re: getting around--I should say hobbling around...LOL...geez, my 83 year old mom can run circles around me). When I first saw a dr. several years ago, I was diagnosed with patella femoral pain syndrome. For anyone who doesn't know, that just means my knee cap no longer tracks as normal, but is off to the side. I had physical therapy for my knee which resulted in little improvement. Things have been getting progessively worse until this fall when my current dr. tried a knee shot (no improvement) and I was again sent for phys. therapy. I'm still in therapy (5 months of it) and the therapist finally noticed that though most of my pain seems to be in my knee, I appear to have hip issues as well. My hip is terribly stiff, my range of motion is severely limited, sometimes get stabbing pains in my groin, and one leg now appears noticeably longer that the other. Even walking with a cane is very difficult and I have an awful waddle...LOL! My hip has felt extremely tight and I can't move my leg much, but I was told by the phys. therapists that I have tight muscles attributable to the bum knee and as the knee improves, so will my hip.

    So, to finally wrap this up, I saw an orthopedic surgeon Friday who took x-rays and showed me my crappy hip. Turns out my knee pain is a result of the deteriorating hip and the leg length discrepency a result of a tilted pelvis due to the hip issue. Dr. said my right hip's almost fused and I need a hip replacement! Geez, wasn't expecting that! Thought at most I might need some ligaments snipped in my knee to fix the patella placement, not a joint replacement and not my hip! I'm in a little bit of shock. After discussing it with the dr., all my symptoms pointed to hip issues as the primary concern, so I'm a little resentful that no one bothered to check it out or even get an x-ray until now.

    See the surgeon Friday AM.

    Looking forward to getting to know forum members and learning from them! Nice to meetcha! :biggrin:

    Kathy
     
  2. Jamie

    Jamie Administrator

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    Re: Newbie: Shocked & Surprised!

    Kathy, welcome to BoneSmart!!! I"m glad you joined us here on the forum.

    Well, your story certainly is a unique one!!! I'm so sorry to hear you've suffered for so long. For heavens sake, didn't your doctors take xrays of your knees to know they were not the problem? Or did they just decide that it was the patella causing it all? At any rate, no wonder you are disappointed in them. I'm happy you found a better surgeon!
     
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    • Hanomare

      Hanomare Junior Member

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      Re: Newbie: Shocked & Surprised!

      HI Kathy,

      I, too have patellofemoral syndrome - but I was diagnosed a few years ago before there was real hip pain. Now I have the hip issues and have been wondering if there was a connection between the two; now after seeing your post it seems there is!

      I know it is a shock but in a way this is a good thing - they can't seem to help the patellofemoral thing, but they can certainly fix the hip, so hopefully the kneecaps will start tracking a little better and reduce the knee pain, too.

      Such a bummer that it took so long to get an answer - but now at least there is a solution and you can look forward to much improved mobility and way less pain.

      Welcome to the club!
       
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      • newnee

        newnee Graduate

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        Re: Newbie: Shocked & Surprised!

        Hi and welcome to BoneSmart. I understand your frustration and I can't believe they did not get x-rays of your hip and back. It took what seemed like forever to get my OS to sign off on the TKR they did a thorough examination first. Before they would even consider replacing my knee, which x-rays already showed to be bone on bone, they insisted on hip and back x-rays and MRI's to make sure the knee pain was not coming from those areas. Once it was determined that my hip and back were fine, only minor arthritic changes, they went forward with examining the knee and determined it needed to be replaced.
         
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        • welshjane

          welshjane Senior

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          Re: Newbie: Shocked & Surprised!

          Hello and welcome to BoneSmart - you're in the right place. I don't know much about the relationship between hips and knees, but there certainly seems to be one. It's shocking that no one thought to check your hip when you presented with the knee pain. How awful that it's taken so long and so much pain before anyone worked out what's wrong, but as Hanomare said, hips are definitely fix-able, so hopefully now you can see light at the end of the tunnel, and before too long you'll be running rings round your Mom, not the other way round.
           
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          • LxManager

            LxManager Junior Member

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            Re: Newbie: Shocked & Surprised!

            Hi Kathy, welcome to Bonesmart. I know exactly how you feel. I'm 48 and have been suffering lower back, groin and leg pains since my mid 20's. Up until 2 years ago every doctor and specialist I saw all put the pains down to my back. Even when they couldn't find anything wrong with it they just said its definitely the back, we've tried to resolve it, now just live with it.
            That I have done until 2 years ago when I went back to my new doctor who sent me for x-rays on my hip... now I'm on an emergency list for a hip replacement.
            Its a bit of a shock when you finally find out that all the messing about was for nothing and if they had looked in the right place to start with it would all be sorted by now. Hopefully they can now sort you out and you will be able to keep up with you mum.
             
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            • Angis321

              Angis321 New Member

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              Re: Newbie: Shocked & Surprised!

              Hi Kathy,
              I'm a newbie too....all my aches and pains i attributed to when i was crippled with leg calve disease at age 7, figured it was just arthritis until this past year it got worse, so much that i finally broke and went to a chiropractor, to learn that my hip itself was deformed, no one ever told me that. Anyways after 3 months of visits, it wasn't getting any better and was spending a ton of money on copays. Finally in a casual conversation got chatting with a coworker who had had two hip replacements, all she said to me was that I shouldn't be in that much pain and i should at least seek a specialist, so I did, thank goodness. He knew immediately what was going on and now I'm scheduled for surgery for a THR on May 10th. I'm 48 (49 next week) and I laugh and just say well I've put this off for 40 years but I'm nervous and anxious. I'm very independent and don't like the idea of someone having to help me after surgery and I hate complaining about being in pain. I love my job but find that its getting difficult to do what I do. Wow, I just wrote a book....sorry but that, i love to chat and no one around me seems to really listen or understand they just keep telling me "you'll be fine". Have they scheduled your surgery yet?
               
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              • klalota

                klalota Junior Member

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                Re: Newbie: Shocked & Surprised!

                Wow, thank you all SOOOOO much for the warm welcome! I can't tell you how much I appreciate your words of wisdom, support, and validation! I'm getting choked up reading your responses. Which leads me to a question…

                A few years ago, after the first round of physical therapy for my knee issue (now known to be a hip issue) didn't work, I was feeling so down I asked my primary care doc if this is just the way my life was going to be from then on...will I be dealing with this pain and have difficulty walking for the rest of my life? His response, "Yeah, probably." Therefore, when I went to my appt. with the orthopedic doc last week I was actually prepared for him to tell me that I'd just have to live with it. Instead, I finally heard that something can be done and the doc said it would completely change my life! This should all be good news, right? I should be happy and hopeful; however, I've been emotional ever since. I even got a bit teary in the doc’s office, geez! I cry a few times a day at least! I read other posts on this forum about post-surgery depression, but have any of you gone through this pre-surgery/just diagnosed sadness? I’m not sure why I’m feeling like this, but I’m so teary and feel so fragile emotionally.

                In case you’re wondering, no, I no longer see that doc that told me I’d just have to deal with the pain for the rest of my life. Also, knee x-rays were done on two separate occasions which showed very little arthritis, so they just kept saying it was the patella femoral syndrome. No MRI was ever done on my knee; no x-ray or MRI was done on my hip.

                I’ve learned a great deal from this entire experience. I was always a pushover for anyone in a position of authority wearing a white coat. I never wanted to be seen as a bad, annoying patient. From now on, I will speak up for myself and I will be a much more informed health consumer! I even typed up a list of questions to ask the surgeon tomorrow!

                Thanks again for all of your support!
                 
              • klalota

                klalota Junior Member

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                Re: Newbie: Shocked & Surprised!

                Sounds like you had a similar experience to mine. Were you emotional after finally getting an appropriate diagnosis? Did you go through resentment at the medical personnel who told you to live with it?
                 
              • klalota

                klalota Junior Member

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                Re: Newbie: Shocked & Surprised!

                I hate complaining about pain, too, which is I guess how I got myself into this drawn out medical problem. I'm realizing now that when PT didn't help the first time, I should have pushed the doc for answers. And I should have spoken up to PT both times and told them that I not only felt no better, but usually felt worse after leaving a session. Instead, I didn't want to seem like a whiny patient, so I just accepted my fate and shut up. This is a good lesson to learn, but I'm certainly learning it the hard way!

                Yeah, I know what you mean about people around listening and understanding. My family and friends are all overjoyed that I will hopefully get better! When I mentioned my emotional lability since the diagnosis, they just tell me I should be happy that things will finally be fixed. I am, really I am, but I'm down about things, too.
                 
              • Jaycey

                Jaycey Moderator

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                Re: Newbie: Shocked & Surprised!

                Hi Kathy, I went through the exact emotional roller coaster pre-op. I can only describe it as a grieving. I think I was mourning the loss of my health and what control I had over the failings in my body. I too was majorly shocked and cried for weeks.

                That's when I found this site. Please keep coming back and sharing your concerns. Rant if you need it. That's what BoneSmart is all about. Member understand because they have been there or are going through what you are right now.
                 
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                • Jamie

                  Jamie Administrator

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                  Re: Newbie: Shocked & Surprised!

                  Jaycey is right. Your whole world has changed dramatically in the blink of an eye! It takes a while to get back on your feet and adjust mentally to all this....even though it is finally good news. I believe you will find that, as you become a more active participant in your health care, your emotions will change to the happiness you want to feel. Just give yourself a little time. And....come chat here! We understand how you're feeling!!!
                   
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                  • Hagar

                    Hagar Member

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                    Re: Newbie: Shocked & Surprised!

                    Hey Kathy, same with me. A year of messing around with x-rays and MRI and PT for my knee, until I finally said something that made my doc tip his head a bit. He examined my hip and turned it away such that it hurt so bad I almost smacked him. He just smiled and sent me for a hip x-ray - and there was my problem! Surgery 6 weeks ago tomorrow and doing great! I expect to climb back into the cab of my Kenworth in 2 weeks!
                     
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                    • klalota

                      klalota Junior Member

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                      Re: Newbie: Shocked & Surprised!

                      I'm doing better since my second appt. this past Friday. I had posted about it previously, but it looks like the forum glitches swallowed it. I'm feeling more ownership of my health and trying to see this as a learning experience. It is definitely an opportunity for me to become my own health advocate. I'm still nervous contemplating the surgery, though.
                       
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                      • klalota

                        klalota Junior Member

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                        Re: Newbie: Shocked & Surprised!

                        Wow, good for you! Sounds like your recuperation is going very well. Hope I do as well as you post-surgery. Good luck returning to your truck and your job!
                         
                      • Hagar

                        Hagar Member

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                        Re: Newbie: Shocked & Surprised!

                        Hi Kathy. This post will be a bit long. I put this on my thread in the recovery room side some weeks ago but I think it will be helpful to you here. It is a letter I sent to my hospital orthopedic supervisor after my surgery explaining exactly what is was like in detail during my three days in the hospital having my right hip replaced. Please believe me when I say this that I am absolutely delighted how it all went. Here you go:

                        Hi Allison.

                        I met you at my “hip class”. My name is Hagar and I had a right total hip replacement at VM on February 6th, 2012 by Dr. J. Clabeaux. I was admitted for three nights in room 1105. I just wanted to give you some feedback on what to me was an amazingly positive experience. That little form in my discharge packet was not enough. Never having been a patient in a hospital before, I was a Navy Hospital Corpsman serving with the Marine Corps and in a busy military ER some time ago (mid 70’s) so I had some tools to evaluate what was happening. By the way, the technology today? WOW!

                        Before I made it to your floor I reported to the surgical suite at 9:45 as instructed. The check in process went perfectly, including a delightful chat with an older woman who did the paperwork. She had a great sense of humor which I tried to cultivate all day. There was a bit of a delay in the waiting room before I was called, then led up one floor to an “induction room”.

                        The last time I was “inducted” was in 1973. The amount of activity in that room was amazing to watch! It was so well organized, people working together in a very fast pace. I was enclosed in a curtained room with a gurney (at least that is what we used to call them) and told to strip, etc. I quickly did that and the curtains were pushed back when I was under the sheet. I got to watch all the organized chaos with great interest. I remembered at one point saying pretty loudly “I sure could use a shot of Jack Daniels!”. And someone a few curtains away yelled back “we have something better!”!. I loved it and burst out laughing. What a great way to go into surgery. Shortly thereafter Dr. Clabeaux came in with a big reassuring grin and we chatted a bit. He clearly was in his element. We confirmed which hip was getting cut and he wrote something on that hip. He said he would see me in the OR but I don’t recall seeing him there. I had utmost confidence in him.

                        I remember an anesthesiologist introducing himself (cannot remember his name, unfortunately) as he sat down next to me and started talking. I advised him to what I believe was a reaction to what I believe was Versed six years previously when I had my colonoscopy. The reaction was what I called confusion and loss of ability to solve logic problems for several months which he turned into “cognitive dysfunction”. That made me chuckle as he said that, exactly right. He then told me that it was not a problem as they were out of Versed. We discussed the spinal anesthetic process as well as the pain medication injected next to my femoral nerve in my hip. I discussed with him my concern about going to my “dark place” as I suffer from PTSD and depression from my military service a long time ago when I was in a real bad spot. I asked him to keep me in the present and not to let me slip in to the past. He listened with great interest and compassion and I really felt good about the situation. I was more afraid of my dark place than I was of the anesthesia or surgery. I wish I knew his name as he was truly a caring physician with wonderful bedside manner. Perhaps a resident? Anyway, next they did the femoral pain block and I got to watch it on the ultrasound while they described the anatomy on screen. There was a second anesthesiologist there then, perhaps a more senior physician. They worked well together, very reassuring. After a bit of a delay until the OR opened, they did the spinal anesthesia. I remember several pokes (my wife counted 7 holes in my back!) and it was not comfortable but it was necessary. I remember a woman holding and rubbing my hand during this. I remember her hands were so soft next to my gnarly paws. I don’t know who she was but she kept me in the present and not the past. That is exactly the type of situation that I know can struggle with. She was great and I never had a chance to thank her. Such a simple gesture meant so much to me. Eventually the anesthesia started working and off we went to the OR, moving fast! At least it seemed like it to me. I might have already had something “better than Jack Daniels” in my IV by then.

                        I remember being in the OR and seeing lots of people but it was all a blur. Things happened so fast. I remember lots of tools laid out on tables and I remember looking for the power tools section. I am a guy, after all. I was then lifted onto the table and I started counting the facets of the light above me. Always an engineer. Then the anesthesiologist started talking to me. I kind of wanted to be awake as long as possible as I was so darn curious about what was happening but it was quickly lights out. Again, a very positive OR experience.

                        I woke up in the recovery room sitting up, suddenly aware that my legs were separated and my head was elevated. I could feel a lump with my hand on my hip where the ice was covering the wound. I was clearly oriented x3, feeling comfortable, warm, and stable, fully and immediately alert, which was a concern for me. I then realized that nobody was interacting with me which I instinctively knew was a good thing. Then I realized that the patient next to me was in distress as they had about 6 staff members working on them. I remember thinking I was happy to not need attention! Every now and then somebody would check on my with a smile and ask me to wiggle my toes. I couldn’t for a while, but I remember trying to understand why my brain was telling me my toes were moving but clearly they weren’t. I was asked if I was feeling pain and I was not, except where that stick was made for the femoral nerve block. That darn site where that catheter was inserted and removed hurt more over the next two days than the incision! As the spinal wore off, I could wiggle my toes but I could also start to feel the surgical site. Then it was off to room 1105.

                        Upon arrival I was immediately tended to by quite a few people. I was quickly made comfortable and introduced to my pain button. All the tubes and wires were sorted out. My wife told me later that the staff introduced themselves to her as soon as they could and made sure she knew they were available for her as well and she really appreciated that. About that time I realized I had a foley catheter in and I was surprised that I was glad to see it! When we were alone I was able to give my wife a “thumbs up” which meant a lot to her. She made sure I was comfortable. I remember everybody that worked with me that night was incredibly attentive and really seemed to care about my well being.

                        I remember nurses asking me my name and scanning my wrist band with every medicine administration. I vaguely remember a nurse questioning me about a medicine as something was telling her something was wrong. She said she would contact pharmacy and get it straightened out. I don’t remember the details but she was on it. Her instincts told her something was wrong.

                        I remember having some nausea which they were prepared for. And I sure liked that pain button. Sometimes the machine would not hiss when I pushed it too often but my pain level was maybe a 2 or 3 and well controlled. I did sleep well at times. The room and bed were comfortable. I believe I pushed the call button once as I felt my butt was getting sore and I wanted to try to sleep on my side. I believe three staff members came in and showed me how to roll on my side while maintaining hip protocols. Again, a good experience. I found out later that the orthopedic surgeons were going to a conference that week so the patient census on the floor was about half normal so I had lots of staff attention! Which helped as there were enough staff to help me get up and walk in the middle of the night (the next two nights) as I wanted the exercise and I thought it might tire me. And that femoral stick still hurt! And I believe a PA came in that night, not sure.

                        The next morning I met Andy, a “PCT”. Nobody ever told me what a PCT was but I figured it out (patient care technician). Andy was outstanding! Of all the wonderful people I met, he stood as as the most caring, the most genuine, of them all. He encouraged me to eat something and ordered up some cream of wheat. He cleaned me up and did all the morning patient care stuff, while chatting with me. I wish there was a way to give him some special recognition as he was genuinely passionate about his job and my well being. He was there my first two mornings. I hope there is a program at VM that helps the best of the best like Andy pursue their nursing degree, as he is an incredible asset. Thank you Andy!

                        I interacted with many nurses and each was excellent, but the PCTs were the ones who I had the most contact with so left me with the strongest memories. I remember wondering why a nurse would come on duty at odd hours and only be there for a couple hours then a different nurse would come in. The PCTs were a constant in a very variable environment.

                        The third morning my PCT was Hannah and she was another provider that was a step above the rest. I only had her for one morning, but she, like Andy, was competent, courteous, and genuinely caring about my well being. I hope she gets a R.N. after her name some day as well.

                        The food was mixed. I loved the menu and being able to order when I was hungry as my internal clock was a bit off. The cream of wheat, bagels, and chicken noodle soup were excellent. The meat loaf and turkey not so good, but I was grateful for it. I want to mention that the staff delivering the meal each and every time made sure I was completely comfortable with the situation before they left. The table was in position, I was sitting up and comfortable. They did not just drop off a tray and bolt. I really appreciated that. My wife also noticed that and appreciated getting a meal as well.

                        I found myself looking forward to PT and OT. I was anxious to get up and get moving. I wish I could remember the PT’s names, as they were great, always encouraging, sometimes cautioning me to slow down. The same with an OT I remember well, Tara. To all these young people, their presence was not just a job, but a calling. They were there because they loved what they do. I never felt like I was a burden. They made sure I could focus on those activities I had to demonstrate before I was discharged and I was one motivated patient! They left me in the bedside chair the day after surgery but I must not have been sitting right. The leg was positioned on the pillows such that that gravity was pulling on the leg rather than down. The leg was being slightly pulled out of the socket. Within minutes the pain shot up to 7 or 8 and my wife called for help. I was helped into the bed and given a pain medicine. Lesson learned. I also discovered the bed had an alarm if I tried to get out....

                        The day before I was discharged a young female PA came in and we talked for a good 30 minutes about the procedure and what to expect and to answer questions. She was not hurried at all and for someone not familiar with the concept of Physician Assistants, I quickly caught on to how valuable they are as the surgeon’s eyes and ears. They had the time to really interact and evaluate me and I really saw the value in that. She was there the next day when I was discharged and we again chatted. I remember talking to her about how my operated leg seemed longer than the other and she explained why to me. I asked if I should jump up and down on my new hip and push the spike further into my femur. She laughed and suggested I might not want to do that. Since then, my pelvis has clearly adjusted and most of the difference has resolved itself. I wish I could remember her name but she was excellent as well, very professional.

                        I wish I was better at remembering names but I will blame it on the dilaudid.

                        I have only one unpleasant experience that I think needs to be mentioned. Allison, you might want to delete this paragraph if you distribute this email. You are certainly welcome to distribute it as I could never thank all the individuals who were part of my team. There was one PCT in the late evening for two of my nights. I don’t remember her name but she was from XXXXX. As one who has traveled to 44 countries, I enjoy talking to people about where they came from. I don’t think she liked that, which I can accept, but she clearly seemed annoyed whenever I asked for something. It reached a point where I quit asking her for anything, which is what she wanted. In particular, the night my catheter came out, I was in the bathroom trying to urinate. I was having some trouble and made a bit of a mess. I was horribly embarrassed and told her when I came out. She seemed annoyed and threw a towel over the urine. That towel was still there when I was discharged the next afternoon. If I could have bent over I would have cleaned it up myself. I expected her to at least call housekeeping but nothing ever happened. I never tried the bathroom again and just used the bedside urinal. And I never asked her for anything again. Her attitude told me she didn’t want to be there.

                        On that note, I want to thank everyone there for an incredibly positive experience. Though I would rather never be a patient in a hospital again, when I get my other hip done I would like the same surgeon, anesthesiologist, OR techs, nurses, PCT’s, even the same room. It was outstanding. The steps leading up to that day prepared me well for the procedure. VM can be a big, confusing, and frightening place. I never expected things to go so well. I was never really cognizant how a patient gives up their privacy and their dignity. Knowing what I know now, I probably would have been a better Corpsman in that Emergency Room so many years ago. And when I need the other hip done, I will try to time it for the day before the surgeons go to a conference!

                        Thanks again everyone! What a team!

                        Best wishes,
                        Hagar

                        I really hope this helps your fear to maybe let up a bit. Information is power. I wish I had done this a year or so ago, believe me. If you have any more questions, don't hesitate to ask. I don't come on these forums as often as I would like, but there are many good people here!

                        Jo, if you would rather I not repost this feel free to delete. I think it might be useful at times to repeat this.
                         
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                        • klalota

                          klalota Junior Member

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                          Re: Newbie: Shocked & Surprised!

                          Hagar,

                          Thanks so much for your positive report! It certainly helps to hear about such good experiences. I've been in crappy shape for so long now that it's difficult to contemplate ever feeling better again, but your post bolsters my hope. Thanks!
                           
                        • Jaycey

                          Jaycey Moderator

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                          Re: Newbie: Shocked & Surprised!

                          Kathy of course you are nervous. We were all nervous pre-op. Just keep talking about it. Come here and rant. Write down all your questions and concerns. It does help!
                           
                        • DallasSarah

                          DallasSarah Post-Grad

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                          Hello Kathy,

                          Welcome to BoneSmart, sorry I'm a little late in saying helloooooooo.

                          You have had a long journey. Hopefully now with your new hip on its way you can recover and get back to a normal life.

                          look forward to following and getting to know you!

                          All the best,

                          Sarah
                           
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                          • Zorro

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                            To Hagar:
                            I am having RTHR in four five days.
                            Thank you, thank you and thank you for reporting your experience.
                            This is exactly what I need to maintian some mental control.
                            As someone upthread said, "Knowledge is Power!"
                            Sincerely,
                            Zorro
                             
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