Doctor

[DizziMom]

Hi. I have had severe dizziness, coordination issues, difficulty concentrating, etc etc for 4 years. I just had an MRI showing "prominence of inferior extension of cerebellar tonsils but craniocervial junction is within normal limits". The neurologist says "We see that all the time. I don't think it has anything to do with your symptoms." My chronic illness doc (OD) thinks it may be Chiari. I also have neurocardiogenic syncope (diagnosed with tilt table). Is this Chiari? Are the 2 diagnoses related? Where can I find a good doc in CT?

[DizziMom]

Thank you. No not overwhelmed. Been doing this for 4 years so I am sort of getting used to information overload. :-)  I appreciate all help and input!

I was never given disks from either of my MRIs (brain or neck) but I will attempt to get them! I have started journals before but everything changes all the time so I gave up but it is a good idea. Thank you again!

[Elisaandbucky]

Hello. I am following your thread and certainly feel compassionate about the frustration you are feeling. It sounds like you need consideration from a specialist who knows about your diagnosis. I read that you faxed your MRI report to Dr. Heilman. Do you also have a disk from the radiology department where you had the study. It is really helpful to keep these for the specialist to view. A true chiari specialist will be able to view things on your MRI that very well may have been overlooked by the radiologist who completed the written report. I have a file in which I keep the original disks of all my studies. When I first went to see my surgeon, I had already mailed a copy of the MRI disk for him to review before our appointment. After my decompression surgery, right before going to my 6-month post surgical visit, I had another MRI that I sent before the date of the appointment. This is important because the doctor can see the changes between the disk from before any surgery and after. Another helpful thing I have found was to keep a current detailed symptom journal. Record any activities you were involved in that may have triggered the symptoms. You can bring the journal with you so you have all important points to make during your visit. You want to make sure you report all your symptoms. I hope you are not overwhelmed by all the information we are giving you. It would just be nice to know that some of your anxiety and stress can be avoided. You are never going to be alone again.

[DizziMom]

I do have the report from the tilt table. I am, as we speak, faxing my neck MRI report (with the note about prominence of inferior extension of cerebellar tonsils) to Dr Heilman in Boston. I will see what he says. Should I have faxed the tilt table report as well? Thank you Selma for all of your help. I see you are very busy helping people on this forum. It it much appreciated!!!

[selmaS]

  Since you have a MRI...you can send that to a Chiari specialist....if they feel you are at a point where surgery will benefit you, ,they will schedule an appointment....

Do you have reports from the tilt table as well as the MRI's?

[DizziMom]

Sorry to bother you again. Should I get a Chiari diagnosis from a NS before going to a specialist or that is where I should start?

[selmaS]

  If you can get into NY then go there as I know they are specialists....if a office gives you whomever is on call....well run the other way....yikes....

AS for our list, as I mentioned the names are of Drs that did treat a member here...it does not mean they are all true Chiari specialists, this is why I say to research them and use the list as a starting point....

It is unfortunate that not many Drs are aware that Chiari can and does affect us or how it affects us.....so, this is why it may be best to travel to a Dr you know will look at not only Chiari but ALL related conditions.

[DizziMom]

Thank you Selma. I saw the list and there was one listed in CT but as I googled her I could not find any info saying she treats Chiari (though her references otherwise were glowing).

I did not have any of those other tests. My current neurologist is not supportive to say the least. He didn't even believe my symptoms and didn't even believe the results of the tilt table at first (ordered by my OD). Trying to avoid getting another doc like him. Neurocardiogenic syncope is very very similar to POTS but instead of my blood pressure dropping slowly it drops immediately after a certain amount of time upright.

I found 2 docs in Boston that were on the list and also when googling found they treat Chiari.

My also OD referred me to one because he is the only NS she has ever come across who was 'thoughtful in his approach' but when I called his office they said he is a spine person and they normally just 'give Chiari patients to whoever is on-call'

[selmaS]

  Hi and welcome to the Chiari forum.

It is possible to be a related condition that you failed the tilt table test.....POTS is a related condition to Chiari and could be the cause of many of your symptoms.

Did they also do a CINE MRI to look for a CSF obstruction? Or a MRI of the complete spine? These will help rule out other issues like disk issues....tethered cord.....another test you should have is to rule out EDS as it too can cause many of the symptoms you mentioned....

We do have a list of Drs the members here compiled of Drs they have been to, treated by and liked, the list is not a referral, nor an endorsement for those listed...it is meant to be used as a tool to research Drs giving you a starting point....know, that you should see a few Drs and compare them and their suggestions....and that you may have to travel to get to a true Chiari specialist...

Know that you are not alone.