I have "Bad Bones" and the pain takes my breath way.....

Posted , 7 users are following.

Hi......  I am a 60 year old woman that has had "sick bones" since childhood.  My father was a doctor and was very worried about me. In 1986 I had a total non cemented right hip replacement up at UCSF thanks to my father's affiliation with the teaching hospital.... that was when the doctors discovered that their was something wrong with my bones but they did not know what it was..... after the hip replacement I have had severe thigh pain..... then a few years ago I fell and hurt something in the hip...... my father had died and I was terrified to seek medical attention for anything without him as my buffer......

I went to a hip specialist last week as now both of my hips a killing me and I can barely walk to the bathroom..... I was suppose to see the shoulder specialist the next day as both my shoulders are killing me.  I was told by the Hip Doctor that my total hip replacement was not just broken but in fact was worn out..... my other hip is shot and also needs replacing...... He had read my records and read what the shoulder surgeon wrote when she attempted to repair my left rotator cuff.  She could not put the anchors in to reattach my muscles as when she put tension on them they broke out of my bone!! ?????  she didn't bother taking a "biopsy"....... if only she had...... anyway..... now I also have a bad heart...... I need a total body replacement!! lol..... I would be a lab rat for that procedure if only it was available......

Everyday the pain gets worse..... the pain meds only take the edge off the pain.....they really don't take the pain away........ I pray everyday for the Lord to end my miserable existence....... my prayers have yet to be answered.  I checked into the "Assisted Suicide" laws.... which only apply to those diagnosed with a terminal illness which will end their lives within 6 months to 1 year.  If I was to commit suicide my husband or doctors could in fact be held responsible for what I did...... so that option is out for now..... I am going to write my congress woman about my situation as the last doctor I saw understood when I told him to send me to a "Veterinarian"...... I would never let my dog suffer the way I am forced to suffer waking up every day.......  I try to watch lots of comedies as they say that laughter is good for the soul.......  I am grateful for this site's allowing me to vent........ my heart goes out to everyone that shares my predicament in any extent...... I Pray for all of us.......

Erela

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  • Posted

    Why not get your hips replaced, I know lots of people who have had this done and they are pain free, why are you suffering? They also do shoulders.

    imwas in a lot of pain and I am younger than you, had my finger joint replaced and pain free. Job done. 

    No no need to talk of suicide when a common opera will fix the problem, what’s stopping you. Medicine has come a long way since your last op 

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    • Posted

      wknight,

      Hello- there are many patients who do undergo hip and a lot less go through shoulder replacement due to its complexity. However, what you may not know is that failure and revision rates are high, longevity of joints are low, and activity level of patients post surgery is usually low.

      As I know replacing a finger joint can be painful (or at least it must have been  prior to surgery), it's not correct to compare it with hip replacement and especially the shoulder joint replacement surgery. The hip and shoulder being much larger and holding different functions than a finger joint - the shoulder having the largest range of motion of all joints - the potential for disability and extreme pain is much greater.

       

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    • Posted

      Dear Wknight.

      I have the first none cemented total hip done in 1986.....it is now been 31 years as I am a 60 year old broken fart lol...... that hip is broken and worn out!  the other hip, shoulders and knees are shoot and cannot be replaced as I have radiation sickness ( due to my mother's time in Nazi Germany.....),,,, which has led to a type of bone issues where the bones are dead.....a type of bone cancer.... that is why the best specialists won't attempt any replacements..... If I could afford to go outside the USA ...... have you researched joint replacements??.......Europe , Japan......they are all so far ahead of the USA.... in other countries Pharma and Insurance companies to not dictate medicine......If it was only that way here......

      I was ecstatic to here that your finger surgery was a success!!! that is awesome.... did you ask the surgeon how long  this finger joint replacement would last.......????....... Hips, Knees, shoulder replacements usually only last 10 years....... I definitely do NOT want replacements every 10 years.... post op recovery on these body parts is awful.......  did you find out about piano finger stretching excercises???....... your profession as a mechanic is hard on the hands....... and I won't lecture you on repetitious motion syndrome but.... you need to remember to do contrasting movements...... your hands, wrists, elbows, shoulders and neck...... you need to be aware of this...... every half hour to 45 minutes stop wrenching.......... stretch your hands, fingers, etc.  soaking in warm water..... stretching.....etc...... please consider this information!!......

      Wish there was an opera for me....... and suicide is only something I think about because I am tired of being a burden.....on my husband..... my family.....

      I have the most amazing husband in the world....... but he has no quality of life as he is always taking care of me......  I went from working on hot rods....fishing....camping....WORKING.....dancing....cooking....taking care of my house....etc....,..loosing the ability to do these things over the last 15 years is hard.....it's difficult to go from being independent to dependent......and the bone pain doesn't level out....it just keeps getting worse...... that is why I am tired and want assisted suicide...... a law passed in 2016 for terminal patients...... I am going to write my congressman as I believe that people in my situation should have the right to die....... I will never commit suicide without this law on my side as my husband, family and doctors could be charged with my death......

      so lets talk cars........ I had a 1956 Nomad... 1955 Chevy 2 door no post..... and just sold my 1966 Chevy C10 Stepside.....I cried for weeks after my husband sold my truck...... he said I was to old and broken to play with hot rods any more.... and now it is so hard to walk I cannot go to CAR shows........ waaaahhhhh...... what do you think??..... an old hippie chick that could work on her own car.......are you laughing???..... as I got sick and could not tinker on hot rods anymore I had to find a mechanic........ he would laugh when I would hand him a list of what he needed to fix..... and when he saw red nail polish dots on the parts that needed replacement......... his name was Ben and he owned a shop by my old house in Redwood City Ca.  The mechanics he hired would ask him why he took the list...... he would tell them that if I was healthy they would not have a job as I was an amazing diagnostician! lol..... My Uncle was a master mechanic for Mercedes in Germany and Israel..... when I was 5 he started teaching me about cars when he would come for visits to the USA every year.... made me love cars for sure....... where do you live....... I am now living in Modesto California and need to find a new mechanic.........do you know any mechanics that are good..... in Modesto??

      Thank you for writing to me......... I wish you the best and hope you do not have any more issues with you hands...... or any part attached to them.....

      Take care of yourself.......always....Erela

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  • Posted

    Oh you poor lady. You make me feel as tho my situation is mild by comparison. Can I ask is it bones or the muscles not supporting bones? There has been much discussion on that topic and it has helped me look more deeply into muscle and in my case tendons around the bones. I guess you have tried alternate therapies and naturopathic approaches. The Chinese are worlds ahead of western medicines in building strength in all aspects. I am on mega doses of vitamins and minerals to assist the body to direct the goodness to where you need it. Also massages and in my case I have acupuncture and Kinesiology as a method of what is lacking in the diet etc. they are often a great source for informal counsel too!

    Please don't give up now  you have got this far and really your Dad would be so hurt if you did not get through this with the courage you obviously have displayed so far! 

    My heart goes out to you 

    Kes 

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    • Posted

      Dear Kes,

      Hi, thank you so much for your letters and kind words about my father.  I have both issues with my joints and torn tendons and muscles in both shoulders.  I went the way of Chinese medicine first.  Vitamins, herbs ( from Chinese herb Doctor) acupuncture, and daily swimming and walking first.  One day when I went for acupuncture the doctor put the pins in and all of a sudden they ALL started to back out of my body( on their own) and fell to the table I was on.  The Acupuncture Doctor freaked out.....called in the other doctors in the clinic.  Each one tried to put those pins in me......each time they backed out.  The Doctors told me that I was very sick and it was time for me to go back to western medicine as there was something "terribly" wrong with me...... I laughed as I already knew I was very sick but was getting no where with regular doctors.....western medicine.

      So..... I went back to Western Medicine........since then I had 1 surgery in 2010 where they attempted to reattach my rotator cuff.  The damage in my shoulder was far worse then the MRI report......the doctor that "read" my MRI didn't know how to read my MRI and the surgery ended up being a nightmare...... she found parts of the exterior bones on the head of the humorous bone where gone..... marrow showing through.....rotator cuff was a "full tear"....when she tried to but in the "anchors" they came tearing out of the bone the moment they put tension on them...... also I was MISSING some anatomical bone in the shoulder that the muscles are attached too.......Sheez........you would think that that doctor would have taken a biopsy of the bone........ or maybe even backed out when she saw all the terrible things going on....... but this lady doctor thought she was GOD and when I told her that I had bone issues she didn't believe me......... now my one total hip is worn out and broken..... the left hip ( mine) needs a total hip.... both my shoulders have torn rotator cuffs and the bones edges are "ground up"....doctor's words not mine...... both my knees need replacement.  My elbows and feet also hurt but they have not taken X-rays or MRI's on those as what is going on with my hips, knees, and shoulders is probably the same...... they took a bone scan and that doctor said that he was shocked by all the inflammation in my body....... my hip replacement was as inflamed as it had been replaced just recently when in fact it had been in over 20 years at that time....... my back fusion was the same but the rest of my spine needed more surgery!  sheeez........ lI need a body transplant!!!!  and I want it to be a size 2 so I can round it up to a 9 or 11...... that would be perfect.  lol...... I try to be brave...... and I am.... they have put me through some brutal tests to find out........ my bones are too sick for them to try any replacements or redo's..........  I am tired of the constant daily pain which I had tolerated since childhood....... I can barely walk to the bathroom..... I use to walk 7 miles a day......... stand on my legs and cook for my family......swim....... how I miss the water......I cannot get in and out of the pool anymore........ back in the Bay Area Mills Peninsula Hospital had an "indoor" pool for the handicapped.  They had a separate bathroom from the locker room where my husband could come in and help be wash off and dress.......since we moved to Modesto I can not find a facility like the one in the Bay Area ...... we now have a "hot tub"..... getting me in and out is a joke!  we are looking into getting a hoist like they had in the hospital pool....... don't think we will be able to afford it .... my wonderful sweet hubby says he will find a way........ I use to love fishing and camping..... can't do those anymore.......... I just loved walking and would walk 7 miles a day with my dogs.......... now seven "steps" can make me cry..... 

      The Doctor says I must be on a proper regiment of pain meds.... every 4 hours or time released....... my general doctor doesn't feel comfortable with the protocol the bone doctor says I should be on so I am waiting for a referral to the pain clinic.......I hope it doesn't take too long....... 

      Finding this site yesterday was wonderful.  Reading what others had to say and suggestions they make was wonderful..... Venting myself was most excellent!

      My heart goes out to all of us........... I would love to hear more of your story and more of the things you have done on your path up "pain alley"....... that is what I call this situation....... yes I use to bowl too! lol..... I was so active......

      It is raining out today...... for some reason cold weather, rain, and barometric changes lock me up the worst! lol...... I am in my zero gravity chair under 3 blankets with hot packs on my shoulders, elbows,hips, and knees.  I pray the pain I have in my hands and wrists with not get any worse....this laptop is the only way I have to socialize........ I cannot sit in normal furniture so I can't really go anywhere with out my portable back chair and I have to make sure there is a place to put my chair...... 

      I have to say again that I am grateful you wrote...... and that I found this site..... one piece of quality given back to my life!   yay yay yay ...... 

      Well I don't want to keep you from what ever you have to do......... have a blessed day and week...... I pray that things keep getting "better" for you!

      Always.....Erela

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    • Posted

      Dear Kes...... I just wanted to write you back as I forgot to tell you in my reply that  your situation is just as severe to you as mine is to me ...... Pain sucks and debilitates no matter whether you have a lot.....or little.... to me we are partners in a sucky situation! ...... Hope you are staying warm today......does the weather affect you???  I so hope not.....

      Have a wonderful day.......Erela

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  • Posted

    Hi Erela,

    I relate to you so very much. My father was a doctor also, and he's passed away now more than 20 years. Because of the way my father was with high standards, I knew my expectation for help with my OA would be low as I wasn't expecting much, but I just didn't understand how low it would go. I'm still looking for a specialist after 3 years to help me understand whether a total shoulder replacement is what I need or could I be helped by tissue engineering (cartilage implant).  I've heard both sides, but there are a lot of negative arguments against TSR's.

    I hope that you could find a doctor who is able to diagnose your condition at this point so that maybe you have a chance for treatment and pain control. 

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    • Posted

      Dear Holly,

      Thank you for your response..... my Dad passed away in 1990..... the only way I would have for treatment would be to go to Germany, Japan, or Switzerland...... I do still have other doctors in the family......... one is an orthopedist that specializes in shoulders....... he told me not to let them attempt rotator cuff repair.... He unfortunately is across the country from me...... The pain was excruciating, so against his advice I had the surgery...... a lady doctor with a God complex...... she just made a mess of things....... now I need both shoulders replaced.  My cousin told me that the "shoulder replacement methods and implements" where "not there yet"...... He told me that Germany was the place to go IF I had healthy bones......which I don't.   Unfortunately for me..... there is no treatment..... only pain control....... I am awaiting a referral to a Pain Specialist.....

      Thank you for writing to me......... I am here if you ever want to vent.....

      Always,

      Erela

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    • Posted

      Erela,

      It's very interesting you mention Japan, Germany, or Switzerland. We lived in the Netherlands for 4 years beginning in 2007, and I learned about the excellent care in private hospitals throughout Germany at that time. When I returned to the states for one of my visits home in 2009, I suffered a back injury that ruptured a lumbar disc. After 9 months of trying to get a diagnosis in TX and being too painful to sit up or walk, I went back to  NL and my husband drove me to Alpha KliniK in Bonn where I was diagnosed in 24 hours. I had surgery there with the late Dr. Willem Zeegers who gave me an artificial disc replacement that I firmly believe he saved me from life in a wheelchair.  He was a brilliant diagnostician and surgeon who warned me several years later in 2013 after I had a traumatic injury to my right shoulder and received a diagnosis of low grade labral tear.  Dr. Zeegers was concerned about the level of skill and expertise in shoulder anatomy and warned to never let an American surgeon perform an arthroscopy or any other type of surgery on my shoulder for any reason.  In his words, he said, "they don't know enough".

      That was 4 years ago, but I went through with the scope anyway to "repair" a torn labrum. It turns out that this surgery was completely unnecessary I since learned last year from another ortho surgeon who practices near Austin.  Not only was it unnecessary, but I now have severe degenerative OA in that joint, i.e. there is no more cartilage left.

      So you and I have been damaged from surgery. I honestly hope there can be someone out there who can help us.  If you could recommend the best place for diagnostics and treatment anywhere in the world, do you think it would be Germany and specifically which doctor?  Also, I was reading that Japan is making great strides in tissue engineering, meaning cartilage implants for arthritic joints.

      At this point, we would go anywhere.

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    • Posted

      Dear Holly,

      Thank you so much for your response and questions.  At this point I do not think there are any doctors of merit in the USA!!!  Go back to Germany!!! England or Japan........ I was told to go to Japan in 1998.  Apparently my mother being a Holicost survivor did not bode well for me or my siblings.  A Dental Surgery Specialist told me that I had radiation sickness.  He sent me to Eden Hospital and to an Infectious Disease specialist who told me that I needed Hyperberic Therapy right away..... They wanted to put me in a tank for 180+ days, taking bone biopsies every 30 days..... My mother did not like being questioned about her time in Nazi Germany.... she just freaked out and refused to help me have treatment.  I had no insurance..... while my mother could afford to have helped me she refused.  So my body has eaten all my joints......IF only I could have gone outside the USA....... Hyperbaric therapy is used after all surgeries for 1 week after the surgery in other countries!!!!! not here..... Pharmaceutical companies do not want us to get well and stop taking there pills..... Insurance companies want us to keep paying premiums and never allowing better treatments to be authorized.

      If you can get out of the USA and can afford treatment elsewhere or have insurance which allows you to seek help in another country.......GO!!!

      I had "back fusion" in 2000..... disc replacement was NOT available in the USA then....... This was the worst experience I ever had!!! it caused a domino situation in my spine..... now I have bulging, ruptures, spondylosis, tumors and nerve damage to the Sciatic and S1 Root Nerve..... if only I could have gone Europe........ did anyone take over the doctor's practice you saw in Germany??? ..... Maybe they can help you once again..... if not I would research online the various medical techniques offered in other countries..... what I have read about medical procedures and practices in Japan sound amazing........ 

      Living in pain 24 / 7 / 365 days a year  has gotten to be too much for me..... Sounds like you are in a better state then me..... I will pray that you stay that way......... my heart aches for you and all my fellow pain sufferers..... Don't go to a doctor who doesn't know what it is like to have severe pain.... that would definitely be my first question.....

      Take care......write me and vent anytime...... always....Erela

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  • Posted

    Sorry that your in pain. Can you see a hip replacement doctor  once hips are repaired you will feel better. Even if your bones are weak there are techniques like bone grafts to help ensure a good outcome. Many with OA have also been thru much pain and read thru the total hip replacement posts and see the progression thru the dibilitating pain of OA then after hip replacement recovery. Everyone one is grateful for the surgery even thru some complicated recoveries.

    Shoulder Surgey may help see another shoulder specialist. just as another specialist in hip surgery can help with a new evaluation. Get several opinions. I wonder what the problem is you speak of is wrong with your bones? Could you give more details ?

    My 97 year old aunt had severe back issues with severe degenerative arthritis for the last 15 years of her life as well as hip replacements and both knees. She never gave in and our whole family were so grateful she was such a fighter and never surrendered. She had her ups and downs as many of us who fel lost at times while coping with pain issues.i am getting old and the last 14 years have been a struggle with mobility and joint pain replacements . I understand your struggles with a loving and open heart. 

    If you ask for help counseling and pain management they can also help with all types of treatment. Sometimes depression with pain can be very overwhelming and statistics    Show in many cases makes depression worse and is a cycle especially if living alone.  I have been there too! It a journey that I hope that with talking with friends family and professionals can help and you must know that this will pass. 

    I hope you continue to find help because you are important to your friends and family. Plz remember that your heart does not only belong to you but also belongs to those who love you and need you! 

    I wish you great comfort in knowing that you are not alone. Lots of supportive people here and Many area hospitals have support systems set in place , call your nearest hospital ask for counselor you can call and speak with and ask for resources available to you. 

    {GENTLE HUGS} 🤗

     

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  • Posted

    Just a thought have you considered a pain pump? Also very sorry to read that your mother was pregnant with you as she was a helocost survivor and somehow you were exposed to radiation and now have radiation poisoning. I think that is what I understand after reading a post further down from your origional discussion. I had no way of knowing until just read that post before I posted earlier regarding assistance in this country. I am limited in my reply from other countries . Also your life is very interesting traveled to many places all over the world how lucky to see other countries. It sounds like you have more confidence in Germany than doctors in US. 

     

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    • Posted

      my Dear Gentle Hugs,

      I love your "knick name"..... thank you for writing me and your kind thoughts...... I so wish I could go to Germany, Japan, Switzerland ...... anywhere in Europe where medical treatment is determined by others....... not Pharma. Companies, and Insurance.  I have gone for 2 snd 3 rd opinions....... UCSF and Stanford both have the leading Orthopedic departments with specialist in all joints....... they told me NO too......  apparently my bones are like butter inside.......and various bones like the tops of my femurs ( upper leg bones) tested DEAD...... you cannot put replacements into joints where the bones will not "integrate" (grow into).  I am a fighter...... I have had bone issues since childhood...... and my Father ( the great heart surgeon) at first when I was little did not believe anything was really wron, he thought I was attention seeking or trying to get out of school...  when I was 14 he found out just how wrong he had been. He then began taking me to specialists..... it was a mystery until I had my hip replaced ( total right hip) in 1986.  That hip is now broken and worn out and extremely painful...... then there is the hip that needs a total hip........ ouch...... then the shoulders.....knees....oh...can't forget my back.....everyday they fight to see which area can reign supreme!!!..... I have not been out of the country since childhood...... but am constantly researching implants and bone treatments in other countries...... just remembered that I didn't mention England.... did not mean to leave them off the list...... did you know that in Europe all patients are given 1 week of Hyperberic Therapy ( oxygen.... divers go into this for the bends) to help with healing.  Patients receiving this have a very low rate of complications and take very little pain medication!!! ...... Hyperberic Therapy helps to and keeps bones alive and healthy....... if only my mother had helped me get this treatment in 1986 I would not be in the situation I am in now....... back then all my joints were not "eaten" yet.......bummer..... oh well..... I do have my sense of humor which keeps me from doing anything to myself to avoid the pain...... went to a shrink who was shocked that I am not "depressed"....I was given 5 Psych Evaluations by 5 different specialists and passed all 5....... so I ask myself..... why am I not depressed???...... I guess my brain won't let me feel sorry for myself or my situation........ finding this site was so wonderful....... found it while researching..........  knowing that I am not alone.......writing with others in similar situations is actually comforting......  I so wish I could take everyone's pain away for them....... I would...... I have been dealing with bone pain since childhood..... the surgeon's that have operated on me have been shocked....... always wanting to know how I could even walk........told me that I had the pain threshold of an Elephant........ taking a small dose of pain medicine every six hours use to work for taking the edge off the pain....... they want me to take an even stronger dose....every 4 hours........ I don't like being a drooling idiot......I don't  drink.... I have been told by DOCTORS I should take my pain meds with a glass of wine.... can you believe it????....... it is raining here in California so my body is not happy......I so hope you are fairing better.....lately my fingers and wrists are starting to hurt and this terrifies me........typing and communication on this laptop is all I have left......... thank you again "Gentle Hugs"...... I wish people around me knew how to give a gentle hug.... lol...... my husband tries..... but he's a powerful man that gives crushing hand shakes.....lol..... my mother in law and Michael's sisters give me gentle hugs which make me feel better..... but they are far away.... we moved to Modesto 2 years ago thinking the weather and medical providers where better........ we were definitely right about the medical providers that have been the best.  Fighting all this bone pain on a daily basis has taken it's toll on my heart which is now failing.....another reason I can't have surgery.....lol.... my heart is to weak for anesthesia!  geez...... it's too weak for them to put in a pacemaker....... as for a pain pump...... I am allergic to the casing....... my allergies to stupid things are also a big problem........ anyway.... it's a long list......you have read enough I am sure.....

      Thank you for writing and sharing with me........ if you want to message me or email to yack please do!  

      Always..... Erela

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    • Posted

      It looks like you have been doing much more extensive research on bone and joint treatments than I have. I began my research journey in shoulder joints and alternatives after right my shoulder was experiencing inordinately high pain levels that lasted more than a year since the scope to repair its torn labrum. You have been through a lifetime of suffering, and it's really only been the last 4 years for me. Before that, I had only the artificial disc replacement in my back which was a great success in terms of recovery because it was done by an expert surgeon/scientist in Germany.

      Would you please check back in with anything you can find? My latest exploration since last year is into tissue engineering, and its very difficult to find anything being done on the shoulder...there's a bit on the knee and some more on hips, but these are mostly all overseas. Rush Univ. Med center is one of  the stateside ortho hospitals that is making claims for cartilage regeneration. I'm supposed to send them a questionnaire and a personal check (it's not free) for screening. Curious have you heard about any work they are doing? Do you think it's more "snake oil"?  I would love to have some insight into them before I send them any money.

      I realize it may be difficult for you to believe since you are living with  crippling pain, but you really are a breath of fresh air here on this forum. It's not that other members aren't great contributors, but you have been through so much yet still persist in keeping your head up and trying to help others. You have so much knowledge and insight that is helpful more than you know.

      I wanted you to know how important you are, and I'm personally grateful that you are sharing your knowledge and experience.

      Thank you,

      Holly

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  • Posted

    Dear Sweet Holly......

    you are the best!!! I appreciate you responses.......I am sorry to say that I really have no faith in the Medical Profession here in the USA.  Anywhere but here seems to be better..... lol......  In researching knees there is an Asian Doctor who does replacement surgery with revolutionary techniques up at UCSF in San Francisco..... he is know to be the best in the USA and a cannot for the life of me remember his name..... crap! lol.... as far as shoulders go...... they aren't that good anywhere yet...... but again outside the USA is best......

    Did I tell you about Hyperberic Therapy?????  yup..... what they give deep sea divers when they come up to fast and get the bends??...... I am looking into getting a chamber for my house.......  They are just know starting to use Hyperbaric Therapy here in the USA, but only for stomach issues....... again CRAP..... it is the best for bone issues......but Pharma Companies and insurance companies don't want this type of therapy..... God Forbid we didn't take their stupid pills anymore........ what is wrong with this country...... my Dad was an amazing doctor..... what is going on with Medicine would break his heart.

    You should check and see if anyone is giving Hyperbaric therapy in your area......

    you can email me if you ever want to chat and or vent and cry.......

    or here.......

    your fellow Bone Pain baby..... Erela

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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