tonsillar ectopia- 8mm

[Graceebaby]

Hello everyone.. I am new to all of this.... I found out by accident that I had low lying cerebellar tonsils, 8 mm... I went to the ER for a dystonic reaction to Tramadol.....was sent home and told all of the pain and systems was in my head. My symptoms persisted ( terrible headaches, which I have been having for about 5 yrs, plus trouble with my speech, stuttering, and tremors, constant blinking of my right eye, and numbness and tingling in my arms, hands, legs, and down my spine.) I never knew anything about Chiari...I was told about the CT scan after a visit to another ER, then follow up with a Neurologist. I am having a MRI next Thursday, and an EEG on Sept 13... I am kind of scared...I was also told I have a lesion on the left side of my brain.......not sure what that is either... Any info or advice would be greatly appreciated....I havent been diagnosed with Chiari, but, my Doctor did say that that is the medical name for what I have.

[Graceebaby]

sorry that posted twice........Another seizure......:(

[Graceebaby]

Thank you for all of the info. Sorry it has taken me a while to get back with you. I have been very ill.. Had to go to ER on Tuesday for seizures, and its been pretty much non stop seizures since.... although my Doc is not calling them that because I havent had the EEG yet.... I feel Im getting sicker, but dont know what to do.....Any help or sharing of your own experiences would be a blessing........

[Graceebaby]

Thank you for all of the info. Sorry it has taken me a while to get back with you. I have been very ill.. Had to go to ER on Tuesday for seizures, and its been pretty much non stop seizures since.... although my Doc is not calling them that because I havent had the EEG yet.... I feel Im getting sicker, but dont know what to do.....Any help or sharing of your own experiences would be a blessing........

[sleepypea]

I can tell you now the Dr. you are seeing at Shands @ UF  is more then likely not a Chiari Specialist. I also am a Floridian going through this Chiari experience and am being treated at Shands @ UF. Unfortunately there isn't a specialist there that I am aware of. I have seen some Dr.s that "know" what Chiari is, but that's about it. As far as I know Dr. Green in Miami is the only real specialist we have here in FL. I am patiently awaiting my opportunity to arise for me to be able to see him. I have heard many good things about him and his bedside manners. Good luck...Please let us know how it goes.

[cynderski]

Where in Florida are you located? I am in the Tampa Bay area and recently had surgery with Dr. Green. I am happy to share my experience with you. Florida is very limited as far as Chiari specialist. There is a Dr in Tampa on the list of specialist. I saw him and would not consider him a Chiari specialist (just my opinion). He sent me to another NS for a "second opinion" who had really no experience with Chiari at all. Needless to say I stopped seeing both of them and made the trip to Miami. So glad I did :)

[selmaS]

  Just be advised, u do not want surgery if the NS is not a Chiari specialist or well experienced with the surgery and chiari, this is where most of the horror stories come from.

Research the drs b4 u consider surgery and make sure it is something u really need as u can end up worse then u were b4 surgery....

There is a chiari specialist in Miami..a Dr Green.....u may want to check him out.

  And being sent from one dr to the next being told it is anxiety , stress to nething but the chiari has happened to most of us here and we have dubbed that "the royal chiari run around"

Hang in there : )

   "selma"

[Graceebaby]

I am greatful to have found this site. Alot of info since I found it. To answer your question, my Neurologist is only doing a MRI of my head as far as I know. These symptoms all started after the dystonic reaction to Tramadol, except for the terrible headaches. Now all of the other symptoms are continuing. I dont believe my Dr is a Chiari Specialist. I am going to Shands Hospital at University of Florida. I believe the Dr thinks I have anxiety, which I have never had a problem with, but I have been having very high heartrates lately, around 120.. not sure why that is happening, but it is very stressfull. I hope it does not take forever to find out how the Dr will treat me. On the first visit, I ask the Doc what he could do to fix the problem he said Surgery....so, not sure what he meant by that....I will just be patient...

[cynderski]

HA= headaches

[drewlevas]

I would like to know what HA stands for?

Thank you.

[selmaS]

  HI and welcome to the Chiari forum.

This is not an easy condition to get dx'd or to find the right drs to help guide u to the right treatments.....we do have a list of drs here compiled by the names of the members drs, it is not meant as a referral and u should research ne dr u consider to see.-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

The lesion could be the result of HA's ...after having sever HA's u can develop a lesion as it is reminats from the HA......That is only one possibility, but it may not be much more than that.,..so try to relax and wait and see what the drs say.

  One test u did not mention is the CINE MRI to see if u have a CSF obstruction.....the other  thing u wan tot do is rule out chiari related conditions as well as other conditions with similar symptoms.

  Please keep us posted with ur MRI and EEG results and do make sure u get copies for urself!!

  "selma"