Chiari Specialists and Follow Up Care

[Guest guest]

Hi Everyone,

 

I've read several posts lately where patients aren't getting the help they need

or being turned down or simply dismissed from followup care.  I'm very sad to

hear all of this. 

 

I only have a few suggestions and they are general so I did not address it to

any specific situation and many of us have probably already heard them. 

 

One would be to look at the Chiari Specialist list and call each office and

describe your situation, then they may say send your records and call to tell

you to make an appt and they think they can help.  Unfortunately, once they see

you or your family member what they suggest may not be what we think is wrong or

what we want to be the fix.  Or, they may call and tell you they can't help

you.  Keep going on the list. 

 

I'm speaking from experience.  I've traveled to see 3 different specialists and

finally meshed with the last one and feel very comfortable and we are working

step by step to get me some relief.  I've had Chiari and had the surgery back in

2002, detethered in 2006 and I have micro-instability - 2mm and possibly more

but I don't move my head well so they can't tell, EDS, osteoporosis and a few

more things.  

 

The other thing to remember is to find a great primary care provider.  One that

you trust and you can call when you feel terrible so they can help alleviate

some pain.  Some PCPs are very resourceful.  I've decided that you have to

interview doctor's and care providers as if you are employing them not the other

way around.  If you don't mesh together, move on. 

 

It also helps to have a family member or good friend who can help you with all

of this because it's exhausting! 

 

Keep copies of all your medical records - they are yours and you are entitled to

them.  Keep a symptom journal- it helps the doctors determine what's going on. 

 

I'm really not trying to sound preachy!  These are just things I've done.  I

realized that my health was the most important thing I have in my life and I

can't enjoy my life without it.  I live in a very remote area where they

couldn't pronounce the word Chiari when I was diagnosed and that was my own

doctor. 

 

I don't want anyone to give up, any mom/dad to get down when their child is

turned down by a specialist because I believe there is always a match

(doctor/patient) for us.  I do know that we usually have to be willing to travel

sometimes to get care. 

 

With many Blessings and Hugs,

Wyoming 

[Guest guest]

Excellent advice, !

Sent from my iPhone

> Hi Everyone,

>

> I've read several posts lately where patients aren't getting the help they

need or being turned down or simply dismissed from followup care. I'm very sad

to hear all of this.

>

> I only have a few suggestions and they are general so I did not address it to

any specific situation and many of us have probably already heard them.

>

> One would be to look at the Chiari Specialist list and call each office and

describe your situation, then they may say send your records and call to tell

you to make an appt and they think they can help. Unfortunately, once they see

you or your family member what they suggest may not be what we think is wrong or

what we want to be the fix. Or, they may call and tell you they can't help you.

Keep going on the list.

>

> I'm speaking from experience. I've traveled to see 3 different specialists

and finally meshed with the last one and feel very comfortable and we are

working step by step to get me some relief. I've had Chiari and had the surgery

back in 2002, detethered in 2006 and I have micro-instability - 2mm and possibly

more but I don't move my head well so they can't tell, EDS, osteoporosis and a

few more things.

>

> The other thing to remember is to find a great primary care provider. One

that you trust and you can call when you feel terrible so they can help

alleviate some pain. Some PCPs are very resourceful. I've decided that you

have to interview doctor's and care providers as if you are employing them not

the other way around. If you don't mesh together, move on.

>

> It also helps to have a family member or good friend who can help you with all

of this because it's exhausting!

>

> Keep copies of all your medical records - they are yours and you are entitled

to them. Keep a symptom journal- it helps the doctors determine what's going

on.

>

> I'm really not trying to sound preachy! These are just things I've done. I

realized that my health was the most important thing I have in my life and I

can't enjoy my life without it. I live in a very remote area where they

couldn't pronounce the word Chiari when I was diagnosed and that was my own

doctor.

>

> I don't want anyone to give up, any mom/dad to get down when their child is

turned down by a specialist because I believe there is always a match

(doctor/patient) for us. I do know that we usually have to be willing to travel

sometimes to get care.

>

> With many Blessings and Hugs,

>

> Wyoming

>

>