Am I expecting too much/

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diclidophora@yahoo.co.uk - 13 Oct 2006 10:55 GMT

Well, I went for the pre op medical for my thr. we spent about 3 hours
in the Hospital. I was favourably impressed by the physio we saw first,
who inspired confidence enormously. But oh dear the pre op nurse. She
didn't even know what Tinea cruris was (fungal infection at the top of
the legs) , hadn't got a clue about rheumatology (RA) medication or
rheumatology etc etc didn't know what enbrel was and wouldn't listen
when she asked me to explain.
Worringly the surgeon, although highly repurable, had never heard of
Enbrel either (or anti tnf therapy), neither had anybody in the
hospital as far as I could tell.

So as of now I am inclined to pull out of this one ! I am a highly
nervous individual when it comes to surgery (partly the result of
working as an air force medic and being married an operating room nurse
for years) and my BP reflected that at 195/95 !! (normally around the
129/80).

The insurance company have sanctioned another consultation, so they
know the score. I will have to arrange the surgery for when we return
from NZ, and am sorry I have wasted so much time messing around with
these people. I feel disappointed , both with the hospital and myself,
but guess that is the way it is.

Is it too much to expect a hospital which is going to get paid
thousands of $ to get it together by consulting a rheumatologist and at
least having a medic around who has a little relevant knowledge. I know
surgeons are quick in and out guys, but surely after 29 years of RA, it
isn't unreasonable to expect somebody to know about the drugs taken and
the precautions necessary.

Am I being unreasonable and should I try another set of bone crunchers
?

I'll sleep on it, but don.t suppose I'll feel any different tomorrow.
It would have been so nice to be reasonably mobile in NZ.

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Gary Z - 13 Oct 2006 13:56 GMT

If your having surgery and the surgeons are not familiar with the drugs you
are taking and how they could adversely affect your surgical outcome, I
would be running the other way (even though I can't run anymore!)
GaryZ

> Well, I went for the pre op medical for my thr. we spent about 3 hours
> in the Hospital. I was favourably impressed by the physio we saw first,
[quoted text clipped - 31 lines]
> I'll sleep on it, but don.t suppose I'll feel any different tomorrow.
> It would have been so nice to be reasonably mobile in NZ.

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Nann Bell - 13 Oct 2006 15:53 GMT

If I were you, I'd definitely get the second consultation. For me, it isn't
as much about specific knowledge as being comfortable with the people who
will be handling your care. Obviously, you felt uncomfortable with both the
surgeon and the hospital. Find someone you feel confident about.

I could see a nurse not knowing about Enbrel, but I'd think a hip specialist
would at least be familiar with it - would want to know what had been tried
to treat the underlying disease and such. Heck, my hand guy was worrying
about my liver biopsy and mtx problems last winter. Yeah, I'd go for the
consultation with womeone else.

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Alice Faber - 13 Oct 2006 15:57 GMT

> Well, I went for the pre op medical for my thr. we spent about 3 hours
> in the Hospital. I was favourably impressed by the physio we saw first,
[quoted text clipped - 28 lines]
> Am I being unreasonable and should I try another set of bone crunchers
> ?

Personally, I think you're being totally reasonable. If they don't know
about cutting edge treatment, they should be consulting with your other
doctors to make sure that they have the entire clinical picture.
Unfortunately, however, this kind of failure to consider *all* medical
issues isn't uncommon. A friend of mine who has lupus just had a
lumpectomy for an aggressive breast cancer. She's had an enormous amount
of difficulty getting her oncologists to talk to her rheumatologist. One
asked her on three separate occasions when she had last seen the RD
(clearly not listening to her answer), and the nurse-practitioner/case
manager clearly didn't understand the phrase "radiation is
contra-indicated for lupus patients". (A sternly-worded email, cc'ed to
*everybody* finally got things straightened out, but still...)

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Cindy - 13 Oct 2006 18:15 GMT

I don't think that you are being too cautious at all.
We have a clinic here that was part of a Bone and Joint hospital and that is
all they did. They have an arthritis clinic and a orthopedic clinic. Now I
think they are separate from the hospital, but the Orthopedic clinic and
Arthritis clinic are together. I wonder if you would have something like
that in your area. I live in the Oklahoma City area. My Rhuematologist is
part of that clinic.
Did I say he is wonderful?
But I am glad that you are going for another opinion and or doctor.
Like some one else said. At least the surgeon should have an idea about the
meds? I would think.
Sending a prayer that you find some good answers and a good surgeon.
Cindy

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Joan Carter - 13 Oct 2006 22:13 GMT

>Is it too much to expect a hospital which is going to get paid
>thousands of $ to get it together by consulting a rheumatologist and at
[quoted text clipped - 5 lines]
>Am I being unreasonable and should I try another set of bone crunchers
>?

This is your life and your body. Get another consult. I'm saying that as a nurse
who learned a long time ago to listen to the patient.

>I'll sleep on it, but don.t suppose I'll feel any different tomorrow.
>It would have been so nice to be reasonably mobile in NZ.

---
Joan

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ladylove77 - 14 Oct 2006 00:43 GMT

I agree with everybody who has said you are not unreasonable, and you should
definitely have another consult. You want someone knowledgable about the
surgery and meds, and will do it right the first time. Good luck.
Gwen

>>Is it too much to expect a hospital which is going to get paid
>>thousands of $ to get it together by consulting a rheumatologist and at
[quoted text clipped - 15 lines]
> ---
> Joan

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Squirrely - 14 Oct 2006 04:21 GMT

I think you are doing good about getting another opinion.

That would be kind of scary having someone working on you that doesn't know
much about the other stuff you are dealing with and the meds you are on.

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diclidophora@yahoo.co.uk - 14 Oct 2006 10:21 GMT

To All.

Thanks folks.
You know and I know what a support group is all about and I do thank
you for your support here.

I will certainly do as you all suggest

Thanks again

Peter

> I think you are doing good about getting another opinion.
>
[quoted text clipped - 47 lines]
> > I'll sleep on it, but don.t suppose I'll feel any different tomorrow.
> > It would have been so nice to be reasonably mobile in NZ.

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d'huit - 15 Oct 2006 02:05 GMT

i think you received sound advice, peter. here's hoping you find the right
surgical team that makes you feel more comfortable about them doing your
thr for you.

kate
To All.

Thanks folks.
You know and I know what a support group is all about and I do thank
you for your support here.

I will certainly do as you all suggest

Thanks again

Peter

Squirrely wrote:

> I think you are doing good about getting another opinion.
>
[quoted text clipped - 50 lines]
> > I'll sleep on it, but don.t suppose I'll feel any different tomorrow.
> > It would have been so nice to be reasonably mobile in NZ.

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debbie m - 15 Oct 2006 16:10 GMT

Peter,

I think you already know it would be wise to get a second opinion. You
just needed some feedback. It will make you feel much better about
your decision and that will help the healing process you are going to
have to go through. It does seem strange that a bone surgeon didn't
know about RA drugs. Anyway, heres hoping the best. Please let us
know what you decide to do.

debbie m.

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