Jump to content

Not Sure What To Think...


Recommended Posts

Hello,

Back in 2005 I was having some issues and a neurologist sent me for a "symphony short bore MRI of the cervical spine". I remember how much the report scared me when I read it, it said at the bottom, "Beaked configuration of the cerebellar tonsils with mild inferior displacement of the cerebellar tonsils. Findings are consistent with Chiari I malformation." The neurologist at the time said he didn't see it, it wasn't an issue.

A few days ago I saw the possible connection between POTS and Chiari I malformation, and I went back to the hospital and got the report and I am going to give it to my cardiologist when I see him on Friday. I'm not sure what good it will do, but I want to make sure I am doing everything I can do to get myself taken care of.

Anyone have any other suggestions?

Thanks,

Angela

Link to comment
Share on other sites

The first thing to do is to check whether the original MRI of the cervical spine was read by a general radiologist or a neuro-radiologists. There is a very specific criteria for a radiographic diagnosis of Chiari I malformation, and there are many radiologists who overcall the finding. Thus, there should be a distinction between "low-lying" cerebellar tonsils vs. frank Chiari I. Secondly, if you scan 100 people walking down the street without any neurological complaints, some WILL have Chiari I, which is asymptomatic clinially in many cases. Third, there is a specific symptom complex associated with Chiari I malformation, and in most cases, it doesn't include POTS. Fourth, intervention for Chiari I includes decompressive neurosurgery, and this most often is used as a last resort, when all other treatment options fail.

You can give a copy of the report to the cardiologist, but it is probably useless, as this is not their area of expertise. If you want to confirm whether or not you have a radiographic finding of Chiari I malformation, I would suggest getting your original films, preferably on a CD, and then ask your neurologist to send it for a second opinion to a qualified neuro-radiologist for interpretation. Even if Chiari I malformation is confirmed, there may be no therapeutic implications of this finding in your case, as outlined above.

Link to comment
Share on other sites

I would see more then one doctor. Get several opinions with neurosurgeons/neurologists, as this is sometimes over diagnosed, and chiari surgery doesn't necessarily fix POTS/ANS dysfunction if you happen to be diagnosed with that also. Although I think that part of the brain has ANS connection, some people with chiari don't have typical "POTS" symptoms.

Sometimes people have been known to develop other complications after surgery, especially if they have EDS.

Some patients are very sick with chiari/chiari related symptoms, and they don't get the proper diagnosis---so it can go both ways.

I edited my post----it was too long---- ;)

If you have further questions feel free to e-mail me. I have met a lot of folks who have chiari, and ANS dysfunction. However, if they have been diagnosed with POTS, then I'm not sure it's "primary POTS", or if it's "POTS" at all.

Maxine :0)

Link to comment
Share on other sites

  • 2 weeks later...

Angelika- I have a Chiari I Malformation and my advice to you would be to go to a neurologist and a neurosurgeon. Since it's not a Chiari II it may not be anything that will effect you. For example: all that came out of my Chiari I was migranes and headaches. Nothing big. Many ppl with Chiari I don't have any problems and sometimes you can grow out of it (like me) or its small enough that it won't bother you or make any difference at all. Feel free to PM me with any questions you may have (sry in advance if it takes me awhile to reply, as I'm not on much).

Hope you feel better!

Hello,

Back in 2005 I was having some issues and a neurologist sent me for a "symphony short bore MRI of the cervical spine". I remember how much the report scared me when I read it, it said at the bottom, "Beaked configuration of the cerebellar tonsils with mild inferior displacement of the cerebellar tonsils. Findings are consistent with Chiari I malformation." The neurologist at the time said he didn't see it, it wasn't an issue.

A few days ago I saw the possible connection between POTS and Chiari I malformation, and I went back to the hospital and got the report and I am going to give it to my cardiologist when I see him on Friday. I'm not sure what good it will do, but I want to make sure I am doing everything I can do to get myself taken care of.

Anyone have any other suggestions?

Thanks,

Angela

Link to comment
Share on other sites

Thanks everyone.

I have a phone number of a neurologist I am supposed to call in the morning and make an appointment with. My PCP and Cardiologist got together and decided I need to see a neurologist since I am now exhibiting neuropathy. Hopefully I can get in soon.

Can neuropathy be caused by Chiari?

Thanks,

Angela

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...