I NEED A BIT OF EMPOWERMENT :)

May 30, 2012

Hi Everyone

I am so very frustrated and hope in posting, I can not only get some advice but

get my fight back in dealing with Dr's and fighting for myself.

I am generally a very strong person, very persistent and I never give up but

after my Dr's appointment yesterday, I was feeling very defeated. I walked out

of the office and just cried and called my husband and said I'm done. I'm not

going back to a Dr again.

I am just disgusted by the care we receive and the ignorance that our medical

professionals possess. Let me explain how my appointment went and please help me

decide how to proceed from here because today, my perspective is back on track

and my feist is up and I am going to fight for myself. I'm just not sure which

direction to go in at this point. I apologize if this is a short story so bear

with me. LOL

I have been very sick for many years. I've walked down the road of Dr's who

dismiss our illness, as so many of us have. 4 years ago, I did land myself at

TCI and had a cranial fusion and tethered cord surgery. I also had such great

care and validation from the dr's there. I can't say enough good about how I was

treated there.

But traveling to NY is not an option at this point do to the financial stuff as

many of you know. So I have not gone back since I got my fusion and just battle

the struggles myself and have excepted that this is where I am.

I am up for 4-5 hours a day then I get so much pain and pressure, I have to go

down and the remainder of my day is lying in bed. For 3 years, this has been my

life and I decided that I want to go on a vacation with my family, I'm tired of

the world passing by so I booked a family cruise and decided, if I get a

wheelchair, half my battle is with walking, so I could muddle through.

The cruise reserved a wheelchair for me then weeks later called me to say that

they can not guarantee me a wheelchair. So in my frustration, I decided to call

a scooter store and see what my options are.

They were very helpful, saying because I do have weakness in my arms as well, a

power chair would be my best option, rather than a standard wheelchair, because

I can be mobile without the assistance of someone pushing me. The insurance will

pay 100% but we need my dr's approval so they set up an appointment with my dr

for a mobility evaluation.

Well, this is when the frustration begins. When I got into the office, they were

shocked that I have lost 65 pounds since they have seen me, which was a very

rapid weight loss. When they were putting the blood pressure on my arm, I told

the nurse that I can feel my heart pumping a mile a minute, this is very normal

in my world. My heart races erratically all the time. (I have had a complete

cardiology work up with no findings)

The Dr comes in, talks about my weight loss and erratic heart and says he is

concerned about this and wants to run tests. I explained at TCI that they said I

have a Retroflexed Odontoid, Basilar Invagination and Pannus Build up. Boy, that

set him off.

He said your problem is with your neck, nothing else. He thinks because I am

fused, that is my issue and does not understand Chiari at all or what symptoms

it causes.

He tells me to stand, touch my toes, bend to the left and right and walk a

straight line, all of 30 seconds of a mobility evaluation. Never asked me a

single question about why I wanted a chair just point blank said I won't meet

the criteria.

I asked him why, he got angry and said " cindy, it's not me decision. It's up to

the insurance company and you won't meet the criteria. But then he says he is

going to run blood tests, thinks I may have a thyroid issue and once he gets the

results back, he will then make a decision and fill out the forms for the

mobility chair. OOOPS, he knew he said the wrong thing and quickly changed his

words and said no, I'll fill out the forms and the insurance company will make

the decision.

So now I'm frustrated and told him myself why I wanted a chair. A very big issue

for me is my racing heart when I am upright. I have even passed out in his

office at one point and they called an ambulance. So when that feeling comes on,

I have to get down very quickly. And in a normal world I find myself always

looking for a place to sit wherever I go. Sometimes, when there is no place to

sit, I lie flat on the ground until this feeling passes. He told me to go on

Ebay and buy a chair. What a jerk!!

But it gets better... I told him my prescription for Oxycontin is long expired,

nearly 2 years old. I take them very rarely because I fear addiction but do

like to have them on hand if I have a family thing and I need to get through. So

he says, just take them, they're fine. Rather than just giving me a new script.

Boy was I mad.

I felt very dismissed and very unimportant. Been there before. Just cried and

said I'm done with Drs.

By the time I got home, I stopped the self pity and called my insurance company

and the mobility company as well. I was told that with that appointment, he

committed to a 20 minute evaluation of my mobility needs. They both said he

lacked in following procedure. He should have asked me many questions.

The insurance company also offered me a number to report him for lack of care. I

told her this is not how I would normally handle this, it is not in me to report

a dr and I asked her if she thought what I just told her warrants a report. She

said I should. I have been with this Dr for 30 years but honestly, he is not

doing the right thing in my opinion. So I battle with the decision to make that

call.

They also said that they will pay for a 2nd opinion, the insurance company was

very understanding and helpful and suggested I look for a new Dr. But where do I

begin? I can't go through another Dr that is ignorant to chiari. I live about 20

minutes from Boston, does anyone have experiences with a Dr that has been

positive in Mass? I am desperate to switch at this point but don't want to

google a dr and set myself up for another disaster.

The mobility company also suggested I go to a physical therapist and have a

mobility evaluation done there. But again, we all know the ignorance we receive

when we say we have chiari and the dismissals we get when someone does not get

it.

I do want to pursue a mobility chair but at this point, I think finding a new Dr

takes Presidents. Sorry this was so very long but if anyone can offer any advice

or direction, I would be so grateful for your help!!

Thanks so much for listening to my rants today:)

cindy

May 31, 2012

I am definitely feeling your frustration with doctors after my day today!! I too

just want to say the heck with it all. But I find it very difficult that this is

the way my life has to be. Spending more & more time and days layed up in bed

while doctors try to pass me from one to another with no resolve.

But on to your dilemmas. I think I would strongly consider reporting this

doctor. But like you, given that he has been your doctor for 30 years it would

make the decision difficult as you would most likely have to find a new doctor

after reporting him. But on the other hand, how many other patients has he

mistreated and how many more will there be if you don't. I know that probably

doesn't help.

As for the mobility evaluation : if the insurance company is willing to pay for

that eval and they have a specific form/protocol that needs to be done I say go

for it! And a physical therapist may be your best option as their main focus is

mobility. I don't think it matters in the long run how well the know or

understand chiari or any of your other disorders. They just need to evaluate

your mobility.

As for your heart episodes. Have you ever been evaluated for dysautonomia or

POTS? Have you ever had a tilt table test? These may be things for you to

explore.

Debbie

>

> Hi Everyone

>

> I am so very frustrated and hope in posting, I can not only get some advice

but get my fight back in dealing with Dr's and fighting for myself.

>

> I am generally a very strong person, very persistent and I never give up but

after my Dr's appointment yesterday, I was feeling very defeated. I walked out

of the office and just cried and called my husband and said I'm done. I'm not

going back to a Dr again.

>

> I am just disgusted by the care we receive and the ignorance that our medical

professionals possess. Let me explain how my appointment went and please help me

decide how to proceed from here because today, my perspective is back on track

and my feist is up and I am going to fight for myself. I'm just not sure which

direction to go in at this point. I apologize if this is a short story so bear

with me. LOL

>

> I have been very sick for many years. I've walked down the road of Dr's who

dismiss our illness, as so many of us have. 4 years ago, I did land myself at

TCI and had a cranial fusion and tethered cord surgery. I also had such great

care and validation from the dr's there. I can't say enough good about how I was

treated there.

>

> But traveling to NY is not an option at this point do to the financial stuff

as many of you know. So I have not gone back since I got my fusion and just

battle the struggles myself and have excepted that this is where I am.

>

> I am up for 4-5 hours a day then I get so much pain and pressure, I have to go

down and the remainder of my day is lying in bed. For 3 years, this has been my

life and I decided that I want to go on a vacation with my family, I'm tired of

the world passing by so I booked a family cruise and decided, if I get a

wheelchair, half my battle is with walking, so I could muddle through.

>

> The cruise reserved a wheelchair for me then weeks later called me to say that

they can not guarantee me a wheelchair. So in my frustration, I decided to call

a scooter store and see what my options are.

>

> They were very helpful, saying because I do have weakness in my arms as well,

a power chair would be my best option, rather than a standard wheelchair,

because I can be mobile without the assistance of someone pushing me. The

insurance will pay 100% but we need my dr's approval so they set up an

appointment with my dr for a mobility evaluation.

>

> Well, this is when the frustration begins. When I got into the office, they

were shocked that I have lost 65 pounds since they have seen me, which was a

very rapid weight loss. When they were putting the blood pressure on my arm, I

told the nurse that I can feel my heart pumping a mile a minute, this is very

normal in my world. My heart races erratically all the time. (I have had a

complete cardiology work up with no findings)

>

> The Dr comes in, talks about my weight loss and erratic heart and says he is

concerned about this and wants to run tests. I explained at TCI that they said I

have a Retroflexed Odontoid, Basilar Invagination and Pannus Build up. Boy, that

set him off.

>

> He said your problem is with your neck, nothing else. He thinks because I am

fused, that is my issue and does not understand Chiari at all or what symptoms

it causes.

>

> He tells me to stand, touch my toes, bend to the left and right and walk a

straight line, all of 30 seconds of a mobility evaluation. Never asked me a

single question about why I wanted a chair just point blank said I won't meet

the criteria.

>

> I asked him why, he got angry and said " cindy, it's not me decision. It's up

to the insurance company and you won't meet the criteria. But then he says he is

going to run blood tests, thinks I may have a thyroid issue and once he gets the

results back, he will then make a decision and fill out the forms for the

mobility chair. OOOPS, he knew he said the wrong thing and quickly changed his

words and said no, I'll fill out the forms and the insurance company will make

the decision.

>

> So now I'm frustrated and told him myself why I wanted a chair. A very big

issue for me is my racing heart when I am upright. I have even passed out in his

office at one point and they called an ambulance. So when that feeling comes on,

I have to get down very quickly. And in a normal world I find myself always

looking for a place to sit wherever I go. Sometimes, when there is no place to

sit, I lie flat on the ground until this feeling passes. He told me to go on

Ebay and buy a chair. What a jerk!!

>

> But it gets better... I told him my prescription for Oxycontin is long

expired, nearly 2 years old. I take them very rarely because I fear addiction

but do like to have them on hand if I have a family thing and I need to get

through. So he says, just take them, they're fine. Rather than just giving me a

new script. Boy was I mad.

>

> I felt very dismissed and very unimportant. Been there before. Just cried and

said I'm done with Drs.

>

> By the time I got home, I stopped the self pity and called my insurance

company and the mobility company as well. I was told that with that appointment,

he committed to a 20 minute evaluation of my mobility needs. They both said he

lacked in following procedure. He should have asked me many questions.

>

> The insurance company also offered me a number to report him for lack of care.

I told her this is not how I would normally handle this, it is not in me to

report a dr and I asked her if she thought what I just told her warrants a

report. She said I should. I have been with this Dr for 30 years but honestly,

he is not doing the right thing in my opinion. So I battle with the decision to

make that call.

>

> They also said that they will pay for a 2nd opinion, the insurance company was

very understanding and helpful and suggested I look for a new Dr. But where do I

begin? I can't go through another Dr that is ignorant to chiari. I live about 20

minutes from Boston, does anyone have experiences with a Dr that has been

positive in Mass? I am desperate to switch at this point but don't want to

google a dr and set myself up for another disaster.

>

> The mobility company also suggested I go to a physical therapist and have a

mobility evaluation done there. But again, we all know the ignorance we receive

when we say we have chiari and the dismissals we get when someone does not get

it.

>

> I do want to pursue a mobility chair but at this point, I think finding a new

Dr takes Presidents. Sorry this was so very long but if anyone can offer any

advice or direction, I would be so grateful for your help!!

>

> Thanks so much for listening to my rants today:)

>

> cindy

>

May 31, 2012

I am a " lurker " normally, but wanted to respond to in Mass. Hope I did it

right this time.

,

I only have a minute right now and I'm not sure this will help. I live in

Rochester, NH. I had surgery for my chiari a year and a half ago. Was diagnosed

quite quickly, here in Rochester, then I found MY OWN surgeon as they had no

experience here, its a small town. Anyway, they guy who saw me and did my MRI's

and surgery was Dr. Carl Heilman. He is Head of Neuro at Tufts Hospital in

Boston. His number is . He was very good to me.

As I said, I don't know if this will help because you probably need a referral

to see him....I'm VERY sorry you are going thru this. You are welcome to email

me.

Rhonda

semor@...

June 3, 2012

Dear ,

I am sorry you feel this frustrated. I know in the last 30 years this Dr has

helped you in some ways BUT I now see that he is not helping. To walk away from

him and to start with a new Dr is fine and at the same time may be hard. Take

deep breathes and relax and look at the pros and cons of leaving this Dr and

also staying with him. A second opinion is always best. Try another one and hear

a different opinion. If you do not like the 2nd Dr you can go back to him and

put pressure on him.

I know you are upset and you do deserve to. Can you bring in a patient advocate

to advocate for your rights? Maybe a third party is going to bring this Dr's

attention to the need you have. Your insurance is ready to pay for this

wheelchair and the answers they gave you are sensible therefore ask to go for a

second evaluation elsewhere , maybe with an independent evaluator.

Please do not give up. Never get tired of fighting for yourself because if you

do then you continue to suffer and the Dr goes on with his life. Your life is

important and you cannot settle for mediocre treatment. Weigh all the

possibilities and just know the best action you take should be for your health's

benefit.

I wish you success.

Lillian

>

> Hi Everyone

>

> I am so very frustrated and hope in posting, I can not only get some advice

but get my fight back in dealing with Dr's and fighting for myself.

>

> I am generally a very strong person, very persistent and I never give up but

after my Dr's appointment yesterday, I was feeling very defeated. I walked out

of the office and just cried and called my husband and said I'm done. I'm not

going back to a Dr again.

>

> I am just disgusted by the care we receive and the ignorance that our medical

professionals possess. Let me explain how my appointment went and please help me

decide how to proceed from here because today, my perspective is back on track

and my feist is up and I am going to fight for myself. I'm just not sure which

direction to go in at this point. I apologize if this is a short story so bear

with me. LOL

>

> I have been very sick for many years. I've walked down the road of Dr's who

dismiss our illness, as so many of us have. 4 years ago, I did land myself at

TCI and had a cranial fusion and tethered cord surgery. I also had such great

care and validation from the dr's there. I can't say enough good about how I was

treated there.

>

> But traveling to NY is not an option at this point do to the financial stuff

as many of you know. So I have not gone back since I got my fusion and just

battle the struggles myself and have excepted that this is where I am.

>

> I am up for 4-5 hours a day then I get so much pain and pressure, I have to go

down and the remainder of my day is lying in bed. For 3 years, this has been my

life and I decided that I want to go on a vacation with my family, I'm tired of

the world passing by so I booked a family cruise and decided, if I get a

wheelchair, half my battle is with walking, so I could muddle through.

>

> The cruise reserved a wheelchair for me then weeks later called me to say that

they can not guarantee me a wheelchair. So in my frustration, I decided to call

a scooter store and see what my options are.

>

> They were very helpful, saying because I do have weakness in my arms as well,

a power chair would be my best option, rather than a standard wheelchair,

because I can be mobile without the assistance of someone pushing me. The

insurance will pay 100% but we need my dr's approval so they set up an

appointment with my dr for a mobility evaluation.

>

> Well, this is when the frustration begins. When I got into the office, they

were shocked that I have lost 65 pounds since they have seen me, which was a

very rapid weight loss. When they were putting the blood pressure on my arm, I

told the nurse that I can feel my heart pumping a mile a minute, this is very

normal in my world. My heart races erratically all the time. (I have had a

complete cardiology work up with no findings)

>

> The Dr comes in, talks about my weight loss and erratic heart and says he is

concerned about this and wants to run tests. I explained at TCI that they said I

have a Retroflexed Odontoid, Basilar Invagination and Pannus Build up. Boy, that

set him off.

>

> He said your problem is with your neck, nothing else. He thinks because I am

fused, that is my issue and does not understand Chiari at all or what symptoms

it causes.

>

> He tells me to stand, touch my toes, bend to the left and right and walk a

straight line, all of 30 seconds of a mobility evaluation. Never asked me a

single question about why I wanted a chair just point blank said I won't meet

the criteria.

>

> I asked him why, he got angry and said " cindy, it's not me decision. It's up

to the insurance company and you won't meet the criteria. But then he says he is

going to run blood tests, thinks I may have a thyroid issue and once he gets the

results back, he will then make a decision and fill out the forms for the

mobility chair. OOOPS, he knew he said the wrong thing and quickly changed his

words and said no, I'll fill out the forms and the insurance company will make

the decision.

>

> So now I'm frustrated and told him myself why I wanted a chair. A very big

issue for me is my racing heart when I am upright. I have even passed out in his

office at one point and they called an ambulance. So when that feeling comes on,

I have to get down very quickly. And in a normal world I find myself always

looking for a place to sit wherever I go. Sometimes, when there is no place to

sit, I lie flat on the ground until this feeling passes. He told me to go on

Ebay and buy a chair. What a jerk!!

>

> But it gets better... I told him my prescription for Oxycontin is long

expired, nearly 2 years old. I take them very rarely because I fear addiction

but do like to have them on hand if I have a family thing and I need to get

through. So he says, just take them, they're fine. Rather than just giving me a

new script. Boy was I mad.

>

> I felt very dismissed and very unimportant. Been there before. Just cried and

said I'm done with Drs.

>

> By the time I got home, I stopped the self pity and called my insurance

company and the mobility company as well. I was told that with that appointment,

he committed to a 20 minute evaluation of my mobility needs. They both said he

lacked in following procedure. He should have asked me many questions.

>

> The insurance company also offered me a number to report him for lack of care.

I told her this is not how I would normally handle this, it is not in me to

report a dr and I asked her if she thought what I just told her warrants a

report. She said I should. I have been with this Dr for 30 years but honestly,

he is not doing the right thing in my opinion. So I battle with the decision to

make that call.

>

> They also said that they will pay for a 2nd opinion, the insurance company was

very understanding and helpful and suggested I look for a new Dr. But where do I

begin? I can't go through another Dr that is ignorant to chiari. I live about 20

minutes from Boston, does anyone have experiences with a Dr that has been

positive in Mass? I am desperate to switch at this point but don't want to

google a dr and set myself up for another disaster.

>

> The mobility company also suggested I go to a physical therapist and have a

mobility evaluation done there. But again, we all know the ignorance we receive

when we say we have chiari and the dismissals we get when someone does not get

it.

>

> I do want to pursue a mobility chair but at this point, I think finding a new

Dr takes Presidents. Sorry this was so very long but if anyone can offer any

advice or direction, I would be so grateful for your help!!

>

> Thanks so much for listening to my rants today:)

>

> cindy

>

June 3, 2012