Re: How can I get my health care team to start listening?

[Guest guest]

Hi Elaina,

For me, I had to stop looking at my health care as a " team concept "

and instead look at it as the " persons I employ to help me " . This

changed my attitude about things, instead of waiting for a " team " to

communicate with each other (which they didn't), I got pro-active,

started to choose my doctors with the utmost care, not always

accepting " referrals " . Yes, alot of work, but now things are all

working. I also spent a number of years " training " Internists in the

neurology of CMT (yes, they should have paid ME for

this 'education'!) and I had one Internist who, after looking at all

the CMT neurology info I gave him, admit " I am way out of my league

here " . At least he was honest.

I have also learned to schedule appointments for either the last

available morning appointment or the first appointment after lunch.

Something about this gets me in, and listened to FAST - lol, they are

either hungry, or well fed and have many more patients to see.

My orthotist has always been the crowning jewel for me. But this

could be his background (born, raised and educated/trained in

Swizterland) and not a product of US medical schools. But then it

could just be his kind, caring personality too.

Bottom line, if you feel you aren't being listened to, go somewhere

else. There is nothing worse than being ignored and there's no reason

your self-esteem should tumble because of a medical professional's

rudeness.

~ Gretchen

>

> Hi all,

>

> I just had to say that when Gretchen said:

>

> > I feel it is extremely important for everyone to understand that

CMT

> > manifests itself differently in all of us, and depends on our own

> > unique genetic code. It is also important to know that NO DOCTOR

OR

> > OTHER PERSON can " predict " what a person's CMT will be like in

the

> > future.

>

> She was 100% correct! I complained of feet pain at age 5 but had a

good 10 years pain free and very active. Yes I had " tired " feet a

lot and off and on some days they were really tired but for 10 years

I was great. I was diagnosed in January 2005 and it's been hitting

me physically hard since then.

>

> I'm working with a podiatrist to figure out why I'm having so much

pain because I'm really thinking it's my orthotics and gait that is

causing the pain and not so much the CMT. I still have burning, cold

icy feet and RLS but I can deal with all of that.

>

> It's the fatigue that I have the worst time with. But my point is

if you saw me 4 years ago I would have told you I felt great and the

idea of anything wrong with me was ridiculous. Four years later I am

the complete opposite but trying to make changes to get me back in

the swing of things.

>

> If I could just get my health care team to start listening. Why do

they think they know my body better than I do?

>

> Elaina/NY

>

>

>

[Guest guest]

Elaina, hi,

I had a few other thoughts after re-reading your post. Re the fatigue: if I

remember, you had surgery in October maybe? OK so now that's 4 or 5 months

later. Recovery from surgery can takes a LONG time - I mean like a year

sometimes- and I mean really to clear the anestetic our of your body tissues.

This can make ordinary fatigue seem worse. Also, about the fatigue, you

mentioned you were working overtime - well, even non-CMT affected people get

major fatigue with extra work. Both of these issues going on in you just

may have completely wiped you out. Just my 5 Cents worth.

Re the foot pain: since you had that foot surgery, has your podiatrist

received all the notes from the surgeon to know exactly what was done? And does

your podiatrist realize your feet have gone through " major remodeling " (lol) and

therefore your orthotics are going to need major remodeling too? And certainly

if your orthotics are " off " , your gait is going to be affected. And if your gait

is affected, you might be expending too much energy to walk, taking you right

back into extra fatigue.

~ Gretchen

[Guest guest]

HI Gretchen,

Yes I had plantar fascia surgery in June 05 and went back to work August 16th.

We've been on overtime since the day I returned and the mandatory amount of

overtime keeps going up. The podiatrist I see was my surgeon and also the woman

who kept me pain free for 10 years. So I really thought this would be just as

easy a fix as the last time just with the other foot. I have complained about

this set of orthotics from day one telling not only my podiatrist but also the

man that made them that they are no where near as comfortable as my last pair.

The pair that helped me stay pain free all those years. Since it's been a full

year and a half that I've been wearing this pair of orthotics the man that made

them refuses to take them back and make another pair like my previous pair.

Even though I complained prior to surgery and since surgery. My podiatrist was

going to try and talk him into doing something for me but I don't

see her for another couple of weeks. My current pair has been adjusted at least

three times with shaving some off the bottom, adding more cushion to the bottom,

etc etc.

But just to show how even doctors you trust can be deceiving--I received copies

of my records from the specialist who diagnosed me in Rochester. Not only were

those records inaccurate (I really thought he was listening but the records show

he wasn't), but his records stated that he thought I had tarsel tunnel and CMT.

Now, he sent a copy to my podiatrist and she had them in front of her at my

pre-op visit last May. She indicated that she felt I did not have

tarsel tunnel and would " start " with the plantar fascia surgery. I knew nothing

about the specialist mentioning he felt it was tarsel tunnel until I received my

records a few days ago. Now why wouldn't the podiatrist say since we are going

in let's do the tarsel tunnel.

I mean this is what the second EMG from the specialist apparently showed, as

well as CMT. I feel betrayed that I took 9 weeks off last year, had surgery,

worked hard to recover, only to still be in pain and now to find out that maybe

that wasn't the right surgery to have

anyway. The frustration is unbelievable.

As far as overtime and work, I really would like my general practioner to give

me a notice for work that overtime is out of the question for me. I am going to

schedule an appointment to see him soon. I am also going to look into the NY

labor laws on overtime. I just had a wisdom tooth pulled yesterday and decided

to take 4 days off. I feel better and rested all ready. So I can prove to

myself that I needed more rest if I can just prove it to my doctors.

I know my gait is not right because of the pain in the right foot because it's

now making my right hip act up. And the orthorpedist has already found arthritis

in my right hip.

I know that I am going to copy all of my medical records, make notations on the

copies of what I had actually said and what is actually correct, and send them

back to the providers with letters stating that they keep the corrected copies

or amend their copies. I have switched neurologists because his records were

the so called 'last straw' for me. I will update those and return the

copies with my letter to his office stating I will not be returning and also to

notify him of how many HIPAA laws he broke. (sending me other providers records

to begin with).

Thanks once again for listening and your support.

Elaina.