chiari 1 malformation

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chiari 1 malformation

Postby Leonna20x » Fri Jun 22, 2007 6:09 am

Hello all,

i have been told i have chiari 1 malformation, they seem to be playing it down and saying they are unsure if it is what is causing my symptoms..which i know for a fact it is. anyway, any advise please?

Leonna
x
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hello

Postby razzle51 » Fri Jun 22, 2007 8:39 am

Hello did you my message about the 2 others in UK that can help you. Its on your PM
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby Leonna20x » Fri Jun 22, 2007 7:07 pm

Hiya razzle,i got the links thanks hun :o) I just havent heard back from them x
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Postby mac » Fri Jun 22, 2007 9:03 pm

Hi Leonna,

Well, this is the deal. Most doctors really do not see enough Chiari (CM) to understand much about it. It is important to see a specialist who works full time on CM/SM and has that deep interest in it. I imagine, from Roz's post, that she has maybe shared this with you and has provided some doctor's names. It's so important for you to research and learn about this condition, as much as you can, and take on the job of your own advocate.

Learn information and that way, when you are told something, you will have an ability to at least ascertain if it makes sense or not. CM causes pain and many symptoms. Any doctor who tells you that is not worth going to.

mac
mac
 

Postby Leonna20x » Sat Jun 23, 2007 2:09 pm

mac wrote:Hi Leonna,

Well, this is the deal. Most doctors really do not see enough Chiari (CM) to understand much about it. It is important to see a specialist who works full time on CM/SM and has that deep interest in it. I imagine, from Roz's post, that she has maybe shared this with you and has provided some doctor's names. It's so important for you to research and learn about this condition, as much as you can, and take on the job of your own advocate.

Learn information and that way, when you are told something, you will have an ability to at least ascertain if it makes sense or not. CM causes pain and many symptoms. Any doctor who tells you that is not worth going to.

mac


No i agree,doctors know hardly anything about it! I am waiting for an appointment with my neurologist as i have not seen him yet, i hope he refers me to a neurosurgeon but i think he will try and brush it of, like its no big deal, if he does he will wish he didnt! As i am not going be told i am fine and i dont need surgery,when i know i do! I have for years and years,thought i was mental as everytime i went to the doctor, they said i was fine! Cleary, i was not.

I have been reading about chiari for a week now lol i know so much about it, as do my parents!

Oh,and does anybody know if it is by any chance linked with neurocardiogenic syncope and/or postural hypotension ? When i was about 13,i got so ill i could not sit up,my blood pressure was really really low and i got taken to hospital for a week*Which was such a nasty experanice i am now a hospital phobic lol* and i ended up getting diagnoised with those two illness's..

Leonna
Leonna20x
 

Postby mac » Sat Jun 23, 2007 8:15 pm

Leonna, I have noticed that quite a few Chiarians also have POTS:
postural tachycardia syndrome

Here's a good site for that: http://www.dinet.org/

I don't know anything about it and why there is a connection, if there is one. Wish I could help out more. But I don't think you are alone with having both conditions.

mac
mac
 

Postby Debster » Sat Jun 23, 2007 11:29 pm

Hello,

I too have ACM-1, and have gotten the same song and dance. For as many years as years as I can remember, (I am now 43) I have had random instances where I feel like my heart skips a beat. I mentioned it to my primary doctor after having my first son at age 30. She took an EKG, and actually detected it on the EKG. She was immediately concerned and sent me to a cardiologist. The cardiologist did all kinds of tests, including an echo-cardiogram, and said everything is fine.

Oh yeah, I also forgot to mention that when I was pregnant with my first son I almost died. I had the advanced stages of preeclampsia, and when they checked my platelets, they found they were extremely low, and said that if they didn't do a crash cesarean, when I went into labor I might bleed out. (I was 5 & 1/2 weeks early, so my son was a preemie)

They told me not to worry about the low platelets, that they would go up after giving birth. Mine took an extraordinary time before they began to go up, and even months after having my baby, my platelets always remained at the low end of normal. They told me not to worry about it, that it isn't low enough to be concerned. Anyone who knows me knows that isn't a good enough answer for me. So I sought out a hematologist on my own and explained to him my situation. He agreed that there must be an underlying issue and took a battery of tests. After several visits to discuss lab work that came back normal, he said there was one last test he would like to do to see if I have a rare condition in which my blood cells are sphere shaped instead of round. Sure enough, he hit the jack pot, that's what the problem. I have something called congenital spherocytosis. Typically a persons blood cells pass through the spleen and become platelets. Since my blood cells are sphere shaped instead of circular, many of them get caught in my spleen and die, instead of becoming platelet. Consequently, I have an enlarged spleen.

I have had consistent ear issues for the past 5-6 years that no one has been able to diagnose. In the process an MRI was done, and that is how the ACM was found. A NS and two ear doctors told me my problems with my ear are NOT due to the ACM, but yet they can't tell me what is causing it. The more I have read on this forum, and the more Internet research I have done, leads me to believe the ACM is behind many of the issues I have. I am hoping to get to TCI soon so I can get more information and help, since no one here has been able to give me any answers. I have submitted my paperwork to TCI, and am still waiting for a call from an intake coordinator to get an appointment. Don't know how I will pay for it, but I just can't take the unknown any more.

I know exactly where you are coming from. Doctors telling you your problem is not from ACM, and yet in your gut you know it is. It's unfortunate because realistically we are not getting the care we need.
I hope you can get some resolve too.

Fondly,
Deb
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Postby mrsariel » Sun Jun 24, 2007 7:04 pm

Welcome to the board,
You will learn a lot here. I too searched for years to the answers for my migraines. It was almost an accident that I found out I had borderline CM. No one even had mentioned it from the MRI.

Fast forward 6 months and I am feeling better on Diamox but still wondering if a lot of my neck pain is due to the CM. Problem is, in CT there is no CM specialists. One day I hope to get to TCI (insurance wont cover it. ) My PCP has been helpful.
CM 7mm diagnosed 12/06.
Tethered Cord diagnosed 10/07 @ TCI
TC surgery 5/13/08
http://www.caringbridge.org/visit/lisas
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