chiari-related conditions and drs

[Guest guest]

Hi,

I have done a lot of thinking, reading posts, seeing several drs, since i lost

my daughter to what i have to assume was related to her chiari. I had never

heard of it untill she was diagnosed in oct 2000, after she began to have

symptoms to what we thought had to be realated to the spinal she had, in may of

2000, when she needed an emergency c section, because the baby had a bowel

movement before she was born. 

 

So from may 2000---oct 2000, she began to have daily headaches, headrushes,

falling down, visual disturbance, speaking problems, tired, numbness in arms and

legs, and many weird sensations in her head. She complained consistently to them

and they did nothing except to say it is stress from haveing a baby.

They finally did an MRI after i called them and said it isnt normal for anyone

to experience these symptoms after childbirth unless something is wrong and they

need to do something, and i wasnt rude but i was darn stern when i spoke to

them.

 

She died two months after that MRI and two weeks after she was sent to a

neurosuregon in sacramento, because she was having leg numbness which was new.

She died suddenly in the ER two hrs after going in for headache, vomiting, and

the talking problem. Reports said she was not in acute distress, and they

suggested to do a lumbar puncture to rule out a subachroniad hemerage.

This was not done and a ct which they said was done on admittance had to have

been copied from the one they did do when she suddenly stopped breathing.

 

Since then it is known my other six kids have a varient of chiari and going by

the complaints they tell me, some type of connective tissue problem.

 

My issue is the medical care for my whole family, is in my opinion, a lot of

mixed up, confused, inconsistant, care which include withheld information, false

information, things being said then denied or twisted or changed as to what i

was told before.

 

I know my son has a syrinx as a report says " no signifigant syrinx found " i have

learned any report stating " no signifigant " means something is seen but they are

not going to tell or write it down. I know this is a fact because two of my kids

were told no chiari by one paticular medical group than when we left them they

were MRI'd again and this time reports stated chiari malformations for both.

What is irritating is how can i obtain proper care with this going on with each

dr i deal with?

Thanks,

Joyce ca

 

 

[Guest guest]

Hi joyce,

I am so very sorry to hear of the loss of your daughter. I have several of the

symptoms you mentioned, leg numbness, tiredness, headaches. I wonder if she was

having seizures ( i have grad mal).

I am so frustrated to hear of doctors writing her symptoms off to stress. It is

very harmful to invalidate someone, imho, when there is an obvious test for cm.

I have both eds ( connective tissue) and chiari i. Tci will not operated due to

the underlying eds. Dr b said he surgery would not hold due to the collagen

issues.

I would suggest taking the entire family to an adult geneticist, getting

confirmation of eds and then taking genetic tests to chirai neurosurgeon. there

are many neurosurgeons, but only a handful that just do chiari.

This may take a bit of travel and expense, but if you want the best care, i

think everyone should go in at once with test results.

Best of luck to you and again i am so sad to hear of your loss.

Sharon Lang

> Hi,

> I have done a lot of thinking, reading posts, seeing several drs, since i lost

my daughter to what i have to assume was related to her chiari. I had never

heard of it untill she was diagnosed in oct 2000, after she began to have

symptoms to what we thought had to be realated to the spinal she had, in may of

2000, when she needed an emergency c section, because the baby had a bowel

movement before she was born.

>

> So from may 2000---oct 2000, she began to have daily headaches, headrushes,

falling down, visual disturbance, speaking problems, tired, numbness in arms and

legs, and many weird sensations in her head. She complained consistently to them

and they did nothing except to say it is stress from haveing a baby.

> They finally did an MRI after i called them and said it isnt normal for anyone

to experience these symptoms after childbirth unless something is wrong and they

need to do something, and i wasnt rude but i was darn stern when i spoke to

them.

>

> She died two months after that MRI and two weeks after she was sent to a

neurosuregon in sacramento, because she was having leg numbness which was new.

She died suddenly in the ER two hrs after going in for headache, vomiting, and

the talking problem. Reports said she was not in acute distress, and they

suggested to do a lumbar puncture to rule out a subachroniad hemerage.

> This was not done and a ct which they said was done on admittance had to have

been copied from the one they did do when she suddenly stopped breathing.

>

> Since then it is known my other six kids have a varient of chiari and going by

the complaints they tell me, some type of connective tissue problem.

>

> My issue is the medical care for my whole family, is in my opinion, a lot of

mixed up, confused, inconsistant, care which include withheld information, false

information, things being said then denied or twisted or changed as to what i

was told before.

>

> I know my son has a syrinx as a report says " no signifigant syrinx found " i

have learned any report stating " no signifigant " means something is seen but

they are not going to tell or write it down. I know this is a fact because two

of my kids were told no chiari by one paticular medical group than when we left

them they were MRI'd again and this time reports stated chiari malformations for

both.

> What is irritating is how can i obtain proper care with this going on with

each dr i deal with?

> Thanks,

> Joyce ca

>

>

>

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