chiari malformation
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just diagnosed

United States

#1 Dec 3, 2011
i was diagnosed friday and i am worried about the nonchalant attitude from my dr considering all the symptoms i have...i could use some usefull info on a dr that specializes in cm that will take ohio medical card. Thanks in advance for any help :)
wow

United States

#2 Dec 4, 2011
I knew it wasn't really common but I thought there would be someone else out there with it!
C'mon Man

Ironton, OH

#3 Dec 4, 2011
No offense, but I've never even heard of it. I will now follow this thread and try to learn something from topix.

Since: Jul 11

Ashland, KY

#4 Dec 5, 2011
I have a syrinx on my spine. It's very similar to cm but instead of only being on your brain stem them syrinx or fluid sac is elsewhere on the spine. I do know that if it's advances too far it does require surgery which involves placing shunts into your stomach to drain the spinal fluid.
ohio chiarian

Dublin, OH

#5 Dec 5, 2011
I can't speak to your Ohio Medical Card, but I can recommend a book, Conquer Chiari by Rick Labuda. Very informative and factual. Start there...make sure you find a doctor (neurosurgeon) that is educated in CM. Don't rush into a decision. I am seeing a doctor at OSU Medical Center. Good luck.
just diagnosed

United States

#6 Dec 5, 2011
I found out today that i am at 8 mm and it is type 1. The neurologist im seeing doesn't even want to see me for 6 months but i can't keep going on with pain, pressure , balance probs, lack of coordination, memory loss , slurred speach , ect.... For 6 months :( they are not even trying to treat the symptoms other than amitriptaline which doesn't seem to help much. Ohio chiarian do your headaches come and go? I told my dr at last visit the longest ive went without a headache is 5 days so he doesn't want to treat it, but i still have pains in my head that aren't the same as an ache although he didn't give me time to explain. I also get terrible pain if i bend over...feels like my head is going to burst! Sorry im rambling but im really concerned and i am getting more info from the internet than anywhere :(
ummm

Grove City, OH

#7 Dec 5, 2011
just diagnosed wrote:
I found out today that i am at 8 mm and it is type 1. The neurologist im seeing doesn't even want to see me for 6 months but i can't keep going on with pain, pressure , balance probs, lack of coordination, memory loss , slurred speach , ect.... For 6 months :( they are not even trying to treat the symptoms other than amitriptaline which doesn't seem to help much. Ohio chiarian do your headaches come and go? I told my dr at last visit the longest ive went without a headache is 5 days so he doesn't want to treat it, but i still have pains in my head that aren't the same as an ache although he didn't give me time to explain. I also get terrible pain if i bend over...feels like my head is going to burst! Sorry im rambling but im really concerned and i am getting more info from the internet than anywhere :(
I would goto the Cleveland Clinic. They are the best and they take Medicaid.
Responsible Adults

Ashland, KY

#8 Dec 5, 2011
just diagnosed wrote:
I found out today that i am at 8 mm and it is type 1. The neurologist im seeing doesn't even want to see me for 6 months but i can't keep going on with pain, pressure , balance probs, lack of coordination, memory loss , slurred speach , ect.... For 6 months :( they are not even trying to treat the symptoms other than amitriptaline which doesn't seem to help much. Ohio chiarian do your headaches come and go? I told my dr at last visit the longest ive went without a headache is 5 days so he doesn't want to treat it, but i still have pains in my head that aren't the same as an ache although he didn't give me time to explain. I also get terrible pain if i bend over...feels like my head is going to burst! Sorry im rambling but im really concerned and i am getting more info from the internet than anywhere :(
Plz get another dr. It sounds that you may be a good surgical candidate. Don't wait to long or it may cause permanent irreversible damage Mine is a 5mm on my T1-my T5 and Lyrica really helps me with the pain. I just recently had a stroke and I'm concerned it was caused by my syrinx but I can't get an MRI to confirm. But it's not about me plz just get a second opinion. Dr bansal is great at olbh.
just diagnosed

United States

#9 Dec 6, 2011
What is olbh and the #? And is he/she a neuro? I may have to get a new referral. Found out today that the neuro is saying the finding of chiari was by accident and that it is not the cause of my headaches. None of my paperwork even mentions my other symptoms so I think they have completely ignored it again, I don't know what to :(
me

United States

#11 Dec 7, 2011
just diagnosed wrote:
What is olbh and the #? And is he/she a neuro? I may have to get a new referral. Found out today that the neuro is saying the finding of chiari was by accident and that it is not the cause of my headaches. None of my paperwork even mentions my other symptoms so I think they have completely ignored it again, I don't know what to :(
Hi. I have known 2 people with type 1 Chiari Malformation. You need to call the Cleveland Clinic or OSU and ask to make an appt ASAP. This is a condition that can be treated and you shouldn't have to live this way. Do you have children? It can be passed to your children. I hope you find the help you need.
just diagnosed

United States

#12 Dec 9, 2011
to me...Thank you , i do have children 2, i am going to contact their pediatrician about having them tested. I have contacted the mayfield clinic in cincinatti and am trying to get a referral from my reg dr. I am interested in finding a regular dr that is familiar with it and will take molina, do you know of any?... Again thank you :)
me

United States

#13 Dec 9, 2011
just diagnosed wrote:
to me...Thank you , i do have children 2, i am going to contact their pediatrician about having them tested. I have contacted the mayfield clinic in cincinatti and am trying to get a referral from my reg dr. I am interested in finding a regular dr that is familiar with it and will take molina, do you know of any?... Again thank you :)
I am sorry. I don't know anything about insurance providers. You could call Molina and ask if particular doctors are covered and if they take that insurance. Good luck to you!
ummm

Grove City, OH

#14 Dec 13, 2011
Dr Mcgregor is great neurosurgeon at osu.
mom

United States

#15 Dec 13, 2011
my daughter has scoliosis and several syrinx in her spine. we go to osu. i'm not sure about the adult care but we're very happy with the pediatric care she is getting.
wondering

Richmond, KY

#16 Feb 17, 2012
I have Chiari Type I and am going to be seeing Dr. Choutka in Ashland. I have a variety of symptoms. They include:

- headaches
- memory loss
-shoulder/arm pain
- dizziness
- balance problems
- black outs
- weakness
- fatigue

It took me years to get someone to do a MRI. They wanted to chalk it up to depression. Finally got someone to take me seriously. I have an 8mm herniation. I had never heard of this either.
CM in Huntington

West Hamlin, WV

#17 Dec 26, 2012
Call Dr. Alberico at Cabell Huntington Hospital. I have been to 5 neurosurgeons and he is the only one who has said it was CM and not arthritis like the others did. I even had one dr who referred me to a pain clinic...I said no thank you. Good luck.
I know

Barberton, OH

#18 Dec 26, 2012
Dr. Chouka at kdmc is the best locally and will take good care of you.
amazon mom

United States

#19 Dec 15, 2014
I also have chiari I have been decompressed but all my symptoms are back including new ones...my dr acts like im stupid when I tell him all my symptoms so did anyone here ever find a specialist in the ironton area? Besides cabell neuroscience? That's where my current neurosurgeon is
more info

London, KY

#20 Dec 15, 2014
There needs to be more information out there on this. This is actually a birth defect that you are born with. Basically as you grow your skull doesn't grow big enough in the back, of your head for your brain therefore your brain herniates into the spinal canal which causes pressure on your brain and on your spinal column which can cause all different kinds of symptoms such as headaches, dizziness, shortness of breath, tingling in arms, legs, etc... From what I have read there is only one true treatment and that is surgery. They can treat the symptoms however with different medications but for a cure it is surgery where they remove a triangle piece of your skull which allows the brain more room. It is true that if you or someone in your family has this birth defect there is a greater chance that your children will also.
more info

London, KY

#21 Dec 15, 2014
http://www.upmc.com/Services/neurosurgery/bra... this is a good website to learn more and has two videos on the right side that is informative.

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