Revision THR Nanamac's story - Part 2

[beesquare]

Re: This is my story

Hi Janet I am so so sorry you didn't get any answers yesterday. I can offer no useful advice just heartfelt wishes for someone to be able to help you. Love and hugs
Anne xxx

 

[glynis]

Re: This is my story

Janet

I am genuinely so sorry to hear that you have had such a big disappointment

The only thing I can say is that I know - from very sad experience - that when you are actually in the middle of a situation it is often very difficult to view it as an outsider might see it. I am just thinking that if you had heard of a surgeon taking on major surgery when there was nothing to see on X-rays which seemed to need correction, you might think it very irresponsible and reckless of him.

A further operation might have left you no better off.

No doubt you will investigate further the possibility of an allergic reaction to the metal, which I know can happen sometimes.

Keep on keepin' on!

Glynis

 

[special lady]

Re: This is my story

If there is he didn't mention it. I trully think he didn't want any part of it as he is an OS at the same hospital where all the damage occurred even though he is in a different office /building/practice.

For all I know, he may be a good buddy to my original OS. I don't know, just disappointed.

Janet,

Yes there is test that can be done to find out if your allergic to the metals, and everything that is in the cement as well. I'm assuming he didn't refer you to a immunologist. They can do an allergy test, they can do a blood work-up. There's three differant test that can confirm if your indeed allergic to the materials your implant is made of.


1. DO NOT lose your spirit or give up
2. Call and schedule an appointment with an immunologist.today.
3. You must find an OS that is in no way assocaited with the
hospital in which you had your THR and Revision.


You had stated in a previous post that you have not had an MRI, CT scan, or bone scan since your fall, all three of these test should be ordered as well. Generally, surgeons do respect their colleagues, but that doesn't always mean that they wouldn't address something if they see something isn't right. At the same time there are some that would avoid getting involved because they don't want to confront their peers. Which was why I had suggested you not see anyone from the same practice or the same hospital. I understand why you saw him and I'm sure the OS you went to see is a well respected & knowledgable OS, but if he even thought for one second that you might be having a reaction to the implant system then he should have referred you to a immunologist. In my opinion he also should have ordered MRI, CT scan, and Bone scan, along with blood work especially since he didn't see anything on the x-rays.

These test are all medically necessary in order to find out what is going on if something is going on, and I just hope you can pull yourself up by the boot straps and not let this OS that you saw yesterday discourage you. Dr. Joel Matta is one of the best surgeons in the US, and he will review all your reports, films, labs, and such. All you have to do is call his office, speak to his assistant, and he will give you the instructions on how to forward everything to him. My best to you, and I really hope you can pick yourself up and move on from the not so good appointment yesterday.

 

[Renate]

Re: This is my story

Janet, how awful how your visit turned out. I have to agree what others say about finding an independent surgeon and get testing done. My thoughts are with you.

 

[MagnoliaMs]

Re: This is my story

Janet It is hard and i don't know if I could be as determined and proactive as you are. But I want to send encouragement here---not finding a major issue might mean a less invasive answer is waiting for you. There are bound to be some steps backward in this journey you are on--keep looking and see as many docs as you need to to find some answers. Keep on with the search and the new set of eyes. All the best as we all hang in there with you!

 

[Jaycey]

Re: This is my story

Janet, I agree with SL. See someone who will help you rule out any allergy. What have you got to loose?

Your BoneSmart friends are all cheering for you Janet. I know this is very hard but as SL says - don't give up. There is an answer out there waiting for you.

 

[DaveGM]

Re: This is my story

I second all the recent comments.

I know its tough for you.

Regards

Dave

 

[nanamac]

Re: This is my story

Thanks guys. I have an appointment with my NP tomorrow as I ended up in the ER on Sunday with BP 199/106 :hate-shocked:. I don't want to give myself a stroke over this. It was 165/86 while there so my meds (multiple) may not have kicked in by the time I went.

Anyway, I was tired and disappointed yesterday but I'm ok today. I won't let the "you know what's" get me down :yes 4:!

He did say where I responded to the Prednisone that I should see the Rheumatologist again as he feels it's an inflammation issue. I have an appointment Thursday as well as with an Infectious Disease doc next week. I'm not giving up.

He also thinks the replacement may be a little tight so that is why I can't bend? properly??? I don't know.

Anyway, thanks again for all your thoughts, good wishes and condolences.

I honestly didn't think I would get the response from him that I did. I knew he practiced at the same hospital but didn't realize he was a part of it , as it is a private practice...oh well...

 

[cotton1958]

Re: This is my story

Oh Janet, so sorry you didn't get anywhere yesterday. Hoping these next visits, they will figure out something! Hope your pain has eased some?

I know how frustrated you must be.

 

[Jamie]

Re: This is my story

Janet, Special Lady's suggestion to speak with Dr. Matta is an excellent one. I truly hope you will consider it.

 

[nanamac]

Re: This is my story

Well, new developments. Saw my Rheumatologist yesterday. He put me back on Pprednisone 10mg, 3X's a day. I know, I said I wouldn't do it again, but the pain had become unbearable. He also called my Psychopharmacologist and was quite impressed with his knowledge on drugs. I am on Cymbalta from him.

Anyway, My Ferritin level (iron) is 515 and should be between 7 and 300. That could be from the transfusions. He wants me to go back to the OS that did my THR as he knows everything that went on.

Probably a good idea as Jimbo did the same thing after all his searching. So, I've got a call into him. The Rheumatologist wants a report in 2 weeks about the Prednisone and wants the original OS to do a bone scan etc.

He is one that makes calls to get the right answers so I am glad I went back to him. Now to get the iron issue resolved :DOH:...there is no end it seems.

 

[Jaycey]

Re: This is my story

Oh dear Janet - Prednisone again :hate-shocked:! Wasn't that the drug that started the whole problem? What are they doing about your iron level. That sounds scary as well.

You take care Janet!

 

[special lady]

Re: This is my story

Janet so sorry to hear about your iron problems. I didn't realize you had such a large amount of blood loss and transfusion during your surgeries. I know patients who receive over 100 units of red blood cell transfusions may develop hemosiderosis. In short an over load of red blood cells causing higher then normal iron, but the good news is that can all be corrected relatively easy.

Respectfully and kindly, I don't understand why you would go back to an OS that broke your femur and then blamed it on the re-hab you were in, but if that's what you think is best then maybe it is for you. I truly wish you the best, and hope your OS can help you.

 

[nanamac]

Re: This is my story

I know Jaycey, this is a maintenace progam on Prednisone. Different that the one shot deal before. Jaycey, the pain was so bad I had no choice.

SL, I am NOT in any way considering letting the OS operate. The Rheumatologist wants to get answers about the transfusions and to have him order the bone scan as I've already had 2 prior to my fall at my hospital.

He would be able to order the scan as he was the surgeon and I would be at his hospital where the surgery took place. See, if no one can find anything wrong, I am not about to be operated on again. But if this OS used material that is irritating me then he should be the one to find out about it.

Insurance is very tough to just keep having these tests. That is why I am being sent back to him. It is also time for us to have a talk :elfrevenge:...

 

[special lady]

Re: This is my story

Well an immunologist is the type of Doc that knows exactly what test to run not a OS. The label sheet is easily accessible to any Doc and any Doc can have it faxed to them in a matter of minutes which would be the most informative way for an immunologist. As far as ordering a bone scan, any Doc can order it and insurance would cover it just all depends on how they code it and why they are ordering it. As far as having a chat with your OS, I say go for it as long as it helps you.

 

[forbesy]

Re: This is my story

Janet

You have been through so much and for what to be back at square one and no further forward, this is now beyond ridiculous and someone somewhere has to shoulder the blame for the pain you are in.
Please keep us updated as we all want to be there to support you.

Billy

 

[Jaycey]

Re: This is my story

I know Jaycey, this is a maintenace progam on Prednisone. Different that the one shot deal before. Jaycey, the pain was so bad I had no choice.

:cry4:Janet, I am so sorry you are suffering!

I agree with forbesy - do what you need to do to get to a better place.

We are here for you - I hope you know that! Take care my friend!

 

[special lady]

Re: This is my story

Janet

I have to agree with Billy, this is beyond ridiculous.... I just don't understand at all why your rheumatologist wouldn't order a bone scan. They deal with joint pain all the time and that's what your having, nor why he wouldn't have sent you to a immunologist and skip this whole going back to your OS... because he is going to HAVE to send you to an immunologist no matter what to have test run to see if your having a reaction of any of the materials in your implant. They know exactly what materials to test for, and what blood work to order as well which will tell them if a reaction is effecting your AIS too. You can even go to the hospital where you had your surgery and get a copy of the label sheet and hand it to an immunologist which will tell him/her everything they need to know about what is inside your body when it comes to the implant system. I am allergic to some differant metals in which were in my implant, and I know what test and what the steps are, this is just crazy when your in so much pain to have to go back to your OS so that he then can or might send you to an immunologist when that's the type of Doctor you should be seeing if there's any question at all about having a reacation.

Honey, I'm only trying to help you understand your actually taking a step backwards instead of forward in finding out if you are having a reaction. If you do go into your OS, I would insist on a new MRI with the program that can over ride the metal, and a bone scan. I'd highly suggest you getting an appointment with a immunologist ASAP first, so they can start running these test for you. Then you will have those results before you go to another OS whether your's or another.

I'm not sure if you understand the whole reaction thing which could be causing other problems that you are experiencing. Janet a reaction can cause problems in your immune system big time, and the longer it's inside of you if you are indeed allergic to anything in there, the harder it is to get control over other problems. I didn't understand this at all, nor did I have any other problems like you have going on but when the immunologist ordered all this other blood work on my immune system I was like why the heck are you ordering all this too.... then once he explained it all to me and I educated myself on it, I realized how a reaction can cause other conditions to your immune system.

 

[nanamac]

Re: This is my story

I appreciate your thoughts on this but I honestly feel that I have to do this to get some answers. I didn't know anything about a THR, OS, etc., before I found BoneSmart.

Now I am armed with a lot of information. I have nothing to lose by going to this appointment. He talked today with the OS that I saw on Monday and that OS is sending his notes to him. My x-rays of course are in the system there.

I feel that I have to do this. No one is exactly chomping at the bit to help me, and if my Rheumatologist ,who I trust, is advising this, I'm going to do it.

NEBH is THE hospital In Boston for joint replacement surgery, I just had bad luck. I don't think I'm making a mistake.

 

[cotton1958]

Re: This is my story

Hey Janet. So how does iron get too high? I have had 7 transfusions in 4 years. So just curious.

Not sure why if you have had bone scans, why it would help to have new ones if they can't find anything.

I'm thinking maybe it is best to go back to original OS and have him figure this puzzle out.

Don't know what to tell you.
Sorry about getting back in the prednisone, but there must be a reason they think it would help. At least you(meaning they) are working on SOMETHING.

Very frustrating for you.

Editing to say/ask....maybe your high iron is an answer to something besides getting transfusions and something else? Don't assume it's transfusions. Seems someone would have picked up on this by now.