Revision THR Nanamac's story - Part 2

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Re: This is my story

WOW! Thank you so much for getting in touch Jimbo! We mention you from time to time and wondered/hoped that all was well with you! I am so grateful that you did respond. Another happy camper with a positive attitude after a revision! Thanks so much Jimbo :wink1:!
 
Re: This is my story

Jimbo....wow! It's so wonderful to hear from you and know you've been biking nearby in Missouri!!! Where were you? There is some gorgeous country in the Ozarks and along the Missiouri River. Did you ride the Katy Trail? How is your little puppy dog? I miss having you on BoneSmart, but am thrilled that you are doing well these days. That's what it's all about!
 
Re: This is my story

So Janet, are looking at another revision, knee replacements-what?
-or are you just living off the fat of the land?
Ha!-probably not.
Jim
 
Re: This is my story

Well Jim, at the risk of boring everyone else to death with it again...I found this wonderful site after coming home from my second rehab. I had my THR 3/19/10 and my femure was fractured while in the first rehab and went undetected. I now believe it was cracked during the surgery and was missed by the OS.

So, 2 1/2 weeks later, after a shove to my side from a CNA to get a bed pan under me, my femur was fractured thru to the implant and I had to have a revision.

I have had ongoing thigh/femur pain ever since and am finally convinced that a revision is the only way I am ever going to be pain free again. I am still on percocet 18 months later and a fall last month has really set me back.

I am on my second OS and he cannot find anything wrong either. I still cannot climb stairs and feel the cup is placed wrong. SO, now I am trying to get up the courage to go for it! Not an easy choice to make, but looking at you and a few others on here, I'm beginning to believe it's a no brainer...

So, that's about it, same ol' same ol'...

If you remember, I told you that you had a twin here named Bob that I worked with at the hospital...
 
Re: This is my story

Bingo! You got it Jamie-I rode most of the Katy trail. It was nice to get out of the drought in Texas (it turns from green to brown at the Oklahoma-Tx border). I have to pay focused attention to throw my tight left hip over the bike, but I got along nicely and singing "Shanendoah" while following that wonderful Missouri river. (reminded me of my childhood and living along the the banks of the Sacramento River in CA). I didn't take Pete :doggieshmooze: as there were four of us in the van, but he sure would have enjoyed snooping around in those woods.
Jim
p.s. I'm sorry I strayed so far away. Well, actually I have been pretty much circling iaround in my same environs.
 
Re: This is my story

Janet, Well if Bob looked or looks like me it probably didn't help him any.
Soooo, no one has seen anything-no MRI evidence or anything?
I remember your agony with regard to the bones.
But it sure sounds like it's all still pressing for resolution, repair, reivision-whatever. Have you found someone you can trust-someone certain enough to do something?
Boy, Janet, I am so sorry for your ordeal.
Jim
 
Re: This is my story

I put it on the back burner/went deep into denial for a looonnngg time. Then, after a recent new member has been sharing her successful revision story, I am beginning to accept the fact that that is the ONLY way to go.

No, I have not personally found "THE" doctor yet. No one can see what I can feel, and the MRI/CT scans show nothing abnormal. Big decision here, yet living in a recliner is also my life and has been for tooooo long, both pre and now post op.

I remember saying tn the second rehab after my revision that the first thing I was going to do when I got home was to pitch the recliner! Never happened as I did not have a successful revision. Little did I know then.

I was hoping that all the discomfort I was having was just the healing pain, but in my gut I knew what I have been feeling is not normal. I can not climb stairs up or down one foot after the other, I can not cut my toe noails on that foot, and my leg rolls in when sitting on the potty.

The docs kept telling me it was because the muscles were weak when in fact I can not force that leg to roll outward. It is something you have to see to understand and I will drag the next OS into a bathroom with me to show him/her exactly what my leg does...

Nobody takes the time anymore. I have been very sick, had a terrible infection this summer from a bite of some sorts that landed me in the hospital so it's been one thing after another. I am tired of being stuck by needles and xrayed only to be told they can't find anything.

Which is a good thing, just frustrating. I just don't have the energy or good health to keep running around in search of answers. Yet, I am not jumping into a revision with out finding "THE" doctor.

Thanks for sharing your revision experience with me. It has given me more hope to keep looking for that doctor. Life is too short to be a spectator for the rest of my days. I want to participate. Stay well Jimbo. Happy trails...
 
Re: This is my story

Hey Jimbo - so good to hear from you. We were wondering what you have been up to! So glad you are getting on with life after all that horrid pain!

Take care!
 
Re: This is my story

Janet, you are so right. No one takes time anymore. It's pretty bad when you have to make a scene to get attention as I did with my OS (actually I probably wasn't as hysterical as I might percieve). I work in the mental health field, and I understand now why people who get upset for any length of time fear being locked up in some room with padded walls where no one can hear their complaints.
I too struggled in the recliner, fearing both the prospects of having to live my life there as well as taking the risk to press revision. It felt like a drastic dice shoot, and I have always been a nervous gambler. In the end-well, not the end because there is always something to contend with even in a good recovery-I opted to trust the OS to tackle what he saw when he actually went in there. Whereas I couldn't trust his listening skills and his hypothetical reasoning, I decided to trust the mechanic in him, and that part of him came through for me. Whereas he couldn't say "You were right all along", he did, like a good mechanic, outline everything that was wrong with the replacement while I was laying in the recovery room.

A riding buddy of mine says we have to keep experimenting-we have to keep adjusting and improving our lives (he happens to be a psychologist). It's easier when we are experimenting with a bicycle (i.e. rasing the seat to see it the ride is more comfortable), but experimenting in the face of such a potentially dibilitating future is so much more difficult to undertake.

I'll tell you this. I think that I decided, in part, and perhaps ironically, that, in fact, I could live life in the recliner-that as long as I was living and had the will to live, I could find direction and activity in my life (I made more contacts and sketched more pictures of the grandchildren in that recliner). So I decided to accept the unknown-the uncertainty. I trusted that life would hold meaning for me as long as I lived it.

Now there were times when I was frightened and desperate, crying out in pain and in despair.
But I eventually realized the pain was saying, "Get on with it!-get it done! It matters not what the outcome is. Your body demands it. Life will direct you no matter where you are, no matter what kind of shape you are in."
So I took the chance.

My hesitation would say that I don't know what you need, what's most definetly going on in you hip-in your bones. But I know that you want to live, and living says "do what we can for ourselves". The rest is up to life itself.
You have others around you, others who care and support you-others you love and cherish. They and others will continue with you wherever life takes you. I hope you meet this challenge with your best intent in life. It will take you beyond your fear and uncertainty.
Jim :friends:
 
Re: This is my story

Hi Janet. Just wanted to add to the good wishes here and send you a big strong healing hug today from rainy Scotland. :friends:
 
Re: This is my story

Oh Boy jimbo, you nailed it! I have become pretty comfortable and CAN live my life just like this, in the recliner. It is why I am on BoneSmart so much! The BIG questions is again just as you said, how much pain can I take, do I want to take, and do I want to stay in this recliner for the rest of my days....

I am missing out on so much, I know. With my grandchildren, travelling to see some, just shopping even, driving the car. I have become so complacent that when I go out now, I am petrified on the road as people drive like maniacs!

So, I guess I don't have a death wish anyway :th_heehee:...

Well, the OS that did all the damage already did a revision, he aint goin' anywhere near this girl again, that's for sure! But I do believe when I feel I have found THE doctor for me, I am doing it! It is a leap fo faith for sure, but at 60, a young 60 at that, I do not want to be remembered as never leaving my recliner! And that's about it right now, that is where I spend my life!
 
Re: This is my story

Hi Janet,
I have been reading some of your story and am sorry that this journey has been so difficult for you and your family. I was wondering a couple things -- is your daughter able to attend some of these medical appointments with you as a second pair of ears, note taker and advocate? Do you have a copy of your surgical reports from the first hip surgeries and medical notes from the surgeon's office prior to the surgery? Which appliance did you end up with at the revision -- nothing recalled, right?

I hope that you are feeling a bit better today. Do you take anything for inflammation? I saw a while back that you were back on your glucosamine/chondroitin supplement and I hope that you are getting some relief from that -- I also took it for years prior to my surgery and towards the end took the combination with MSM as recommended by one of my docs. I did have to increase my dosage in the last year prior to surgery and found that helped a lot my hip and other joints too.

Lastly, I wonder if you would be able to get any type of OT or PT that might help with just increasing your ability for the daily living types of activities. Would you be able to do some sort of minimal activity like that? I worry that as you spend more time in the recliner muscles get a bit weaker and that jeopardizes things like balance.

Take care,
Cardie
 
Re: This is my story

I can't answer at the moment Carli, but will in a bit...Thanks for your input...
 
Re: This is my story

Janet, I am sure you will be remembered for far more, obsuring the fact that you were in a recliner, but I understand that you want to open the envelop, the front door and the byways to better functioning. and than never leaving your recliner.
And I don't think you are complacent or satisfied. You have shown us you want more though it really is a struggle to transition into the driving environment when you have been a largely steering a recliner. For me it was like entering a race uprepared or untrained, clambering into a roller coaster with an ice cream cone in hand, or going to flight school in a body cast.:hairpulling:
And, of course, there really are some crazies out there. :hate-shocked:
Now you just have drive well enough to find a good surgeon, right?
Jim
 
Re: This is my story

Janet it makes me so sad to see you still on bonesmart. When I joined you were clearly a regular poster, you supported me and many other through our journeys of fear and pain, you now must take that energy and gather the determination to find a revision specialist and get yourself back on the road to recovery. Forgive me, but I feel you are stuck in a rut, and sometimes its easier after and experience like yours, to stick your head in the sand and plod along, than to do something about the issue. Janice you deserve better, I was terrified like you, but I am so glad that I placed my trust in my new consultant and he did,nt dissappoint. Most people you helped have moved on and I to am less and less on the forum, but I keep coming on to see have you got your situation resolved, and then I think I would be happy to move on knowing that you who helped me finally got the results you deserve. GO GIRL!!!
 
Re: This is my story

I guess you are what is called "gunshy" after the two disappointing results. And who can blame you. But from what you said it was one surgeon who did both unsuccessful procedures. I think you will know when you meet the surgeon who gives you great confidence and who has the credentials and record to back it up. That is a wonderful feeling of empowerment. I was so terrified about everything but the surgeon made me feel super confident and I think you need that.

So--as hard as it is--keep looking and make finding him or her the prioritry. Then it will be downhill. And downhill is what you clearly deserve and need. I know it is coming. The hill gets toughest just before you get to the top, girl. You can do it! Go!
 
Re: This is my story

You are all absolutely correct! Petrified, more than gunshy! However, I know I just need to find the right OS and when we click I will go for it.

Carli, my daughter is super smart, but we clash all the time. She also tends to avoid doctors so she is not the best one to go with me.

My post op report showed noting significant except " very small bones". The second report clearly stated the fracture which he referred to as caused by an incident in rehab...

So, there ya go. He covered his butt. The components I checked before and they were not recalled, however, I forget what was used as I have two different parts now.

I have been given some new names of doctors and surley can and will start over again but for right now I am waiting to see the pain clinic guy as well as the knee guy.

The G&C has never done anything for my hips. I started it again for my knees. How much did you end up taking? I only take 2 a day as recommended. My GP is not thrilled with supplements and would rather I didn't take any.

That is actually when my knees started to act up badly! She had me stop all supplements after my hospitalization and prednisone incidents and I have not been able to control the pain since.

Once I can get some relief and am able to walk better (reason to see the pain clinic guy) then I will start the search for a new OS. I am going to see the knee guy as well.

I will go thru with another revision, but not until the holidays are over. I just don't have it in me to do it at the present time. So, that gives me time to search for a new OS.

I've been given the names of a few so I am gathering all my info at the moment. Thanks for your input.
 
Re: This is my story

Hi Janet,

On the Glucosamine -- I use Vitamin Shoppe brand and took 2 capsules three times a day. The capsules are each 500 mg of Glucosamine sulfate, 400 mg of Chondroitin sulfate and 500 mg of MSM (Methylsulfonylmethane). I have not found the "mainstream" docs to be very fond of anything that is not pharmaceutical, however, the veterinary docs are big on glucosamine for ailing dogs.

You mention having "post-op" reports -- how about the actual surgical report that was dictated by your surgeon after each surgery? I ask because I wonder if you could circulate these around with a narrative from yourself about your hip issues and paper copies of your x-rays to a few OS surgeons while you are waiting to get thru the holidays. The key is to find highly reputable surgeons that have revision experience -- which may require you to go out of the area.

Sorry about the clashing with your daughter. My mom and I did some of that too, but working thru some of her medical issues together helped to unify us.

Just my two cents (tiny coin icons dancing happily)
Take care,
Cardie
 
Re: This is my story

Oh Carli, don't get me wrong...my daughter was my greatest advocate when I was going thru the other situations. I think she would rather I left well/bad enough alone as she was very upset at the way things turned out. She was speaking for me to the doctors/nurses during the last fiasco and it left a pretty bad taste in her mouth too.

She certaily would go with me but it would mean taking time off from her extremely busy and stressful job. SHe also has two little ones so there is a lot more than just going with me involved.

She wanted me to see my current OS before the initial surgery as a friend of ours had him do her THR. But, I was so confident that I was making the right choice that I didn't listen.

She could be saying "told ya so", but she's not. I think she just wants to deny the whole thing like me. She would do whatever I needed her to do for me and I really can count on her.

She is leary of me getting info from the internet of course...but she will support what ever I choose to do.
 
Re: This is my story

I think it does help to take someone to the Dr. with you, whomever it may be, that understands what you are going through, and help focus and remember what the Dr. says, as it's sometimes hard to recall everything they say.

Of course, doesn't help if you can't find a Dr!! Hope you find a good one soon to get the ball going, even if you want to wait until next year to get whatever needs to be done.
 
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