Basilar invagination VS retroflexed odontoid

[Guest guest]

Help! I am on a quest to ready myself with as much information in preparation

for my upcoming appt with my neurologist. After having decompression and TC

surgery and not seeing much improvement I have been developing new symptoms and

ones that improved are coming back. Explaining what is going on to one of my

fellow chiarians she has urged me to send my records to NY to be evealuated for

retroflexed odontoid as I am an almost exact mirror image of her and her chiari

journey.

My question is this: is retroflexed odontoid the same as basilar invagination?

Are they different? Or do they just go hand in hand? Meaning if you have one

then you have the other but depending on the doctor they might call it one or

the other? My search for info on the RO is not leading me very far but some of

the articles I've read keep mentioning the BI which has a lot more information.

And from what my friend has told me about her symptoms, tests and treatment for

the RO it also sounds similar to the BI but can't find any medical info on RO

symptoms so I'm just going by her experience.

There are things that I have that fit with BI that none of the doctors I've seen

this far have been able to explain to me. Regardless, I know I will be sending

my records to NY but have an appt in 1 1/2 weeks with my neurologist and would

like to bring as much info to him as possible. As most of us, if it wasn't for

the research I've done on my own and then bringing it to the right doctors

attention I wouldn't be where I am today.

Debbie

[Guest guest]

Debra,

RO and BI are similar but not the same. Right off, I don't remember the

differences. RO has to do with the angle of the odontoid bone. BI has to do with

other skull measurements and encroachment, if I remember correctly. In a way

it's unimportant because the symptoms and treatment are the same. Dr. Menezes in

Iowa City is considered the top expert for RO and BI. I wish people didn't have

the belief that TCI is the only place to go for expert care.

As for symptom improvement after surgery and then deterioration, it was recently

explained to me that quite often the " relief " is actually the result of the mega

doses of steroids after surgery, which takes months to clear, rather than actual

anatomical improvement.

Good luck,

Beth in CA (with 13yo old daughter who was under-decompressed and fusion to C3 5

months ago who is now in constant pain again and has had a PICC line since March

for bone infection)

Sent from my iPhone

> Help! I am on a quest to ready myself with as much information in preparation

for my upcoming appt with my neurologist. After having decompression and TC

surgery and not seeing much improvement I have been developing new symptoms and

ones that improved are coming back. Explaining what is going on to one of my

fellow chiarians she has urged me to send my records to NY to be evealuated for

retroflexed odontoid as I am an almost exact mirror image of her and her chiari

journey.

>

> My question is this: is retroflexed odontoid the same as basilar invagination?

Are they different? Or do they just go hand in hand? Meaning if you have one

then you have the other but depending on the doctor they might call it one or

the other? My search for info on the RO is not leading me very far but some of

the articles I've read keep mentioning the BI which has a lot more information.

And from what my friend has told me about her symptoms, tests and treatment for

the RO it also sounds similar to the BI but can't find any medical info on RO

symptoms so I'm just going by her experience.

>

> There are things that I have that fit with BI that none of the doctors I've

seen this far have been able to explain to me. Regardless, I know I will be

sending my records to NY but have an appt in 1 1/2 weeks with my neurologist and

would like to bring as much info to him as possible. As most of us, if it wasn't

for the research I've done on my own and then bringing it to the right doctors

attention I wouldn't be where I am today.

> Debbie

>

>

[Guest guest]

 I have bi according to my MRI's it is flattening the medulla of the brain stem

I'm not sure whether ro is the same thing.I've had 3 surgeries for herniated

tonsils my first one was in 1974 the last two were at TCI I also have a tube in

my spinal cord to reduce the syrinx in the C2 area they helped me some but I'm

still having a lot of problems they say I have some permenent damage which was

done to my spinal cord due to the pressure on my cord for many years.

 

 In my own opinion I think the bi is causing some of my problems but it doesn't

seem that there is anything that can be done to help this according to the Drs.

I've seen.Hope you get some answers that your looking for.Good Luck

(Indiana)

Surgery for Chiari in 1974 at age 17 which I've always considered it a success

even though Ive always had problems.I new little to nothing about Chiari until

May 2006.I've had 4 surgeries done in the last 3 years they've all been done at

TCI in NY.

>To:

>Sent: Friday, May 4, 2012 1:57 PM

>Subject: Basilar invagination VS retroflexed

odontoid

>

>

> 

>Help! I am on a quest to ready myself with as much information in preparation

for my upcoming appt with my neurologist. After having decompression and TC

surgery and not seeing much improvement I have been developing new symptoms and

ones that improved are coming back. Explaining what is going on to one of my

fellow chiarians she has urged me to send my records to NY to be evealuated for

retroflexed odontoid as I am an almost exact mirror image of her and her chiari

journey.

>

>My question is this: is retroflexed odontoid the same as basilar invagination?

Are they different? Or do they just go hand in hand? Meaning if you have one

then you have the other but depending on the doctor they might call it one or

the other? My search for info on the RO is not leading me very far but some of

the articles I've read keep mentioning the BI which has a lot more information.

And from what my friend has told me about her symptoms, tests and treatment for

the RO it also sounds similar to the BI but can't find any medical info on RO

symptoms so I'm just going by her experience.

>

>There are things that I have that fit with BI that none of the doctors I've

seen this far have been able to explain to me. Regardless, I know I will be

sending my records to NY but have an appt in 1 1/2 weeks with my neurologist and

would like to bring as much info to him as possible. As most of us, if it wasn't

for the research I've done on my own and then bringing it to the right doctors

attention I wouldn't be where I am today.

>Debbie

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