Are my symptoms getting worse???

[Jecca0809]

I was diagnosed with Chairi Malformation about 3 or 4 years ago and I can easily say I will never forget the words I was told after the diagnosis!! "go home and google it" those were my discharge orders from the hospital. I have always gotten severe severe headaches almost diasbling at times, and when I laugh, cry, or cough to hard it causes so much pressure in the back of my head. I also have always been sick to the point of vomiting all day long and had and still has effected me in many ways and impacted health. Now the symptoms as an adult have only gotten worse and  I am not sure if these other issues are linked. I have an increase in my learning disability, severe dizziness, increase in rapid heart rate, low and high blood pressure, the pressure in my head on coughing laughing and crying seems to be worse, headaches are almost everyday and to the point that it causes pressure in my face as well as head, i have had developed a seizure disorder (grand mals now) that go back and forth between being under control (at the current moment very much not under control), severe weakness in my legs that I was in a wheelchair for seven months and now have to use a walker, major balance issues, severe neck and back pain that I get trigger points to help relieve it, blurred vision even with my glasses on, ringing in my ears that are constant, nerve damage hearing loss (not really sure what kind as it is still being tested as it gets worse), and latest is now two forms of a speech disorder (aphasia and dysphonia) along with a a 99% diagnosis of a movement disorder. The neurologists are puzzled and look at me like I am crazy and refer me to a pyschiatrist (and I already see one to treat mental illness which doesnt help the fact). Doctors either have no idea what this is that is showing on my MRI, dont know how to treat it or what to do regarding it because they have no real knowledge regarding it, or not all MRI's will show or acknowledge that it is Chiari 1 (which again I was told that it is a lack of knowledge of the tech that read the images). I am only 26 years old and my life is surrounded by specialists to treat each of these problems. I do not have a social life or a life at all really because I have so many doctors and speacialists to see to treat issues that are becoming more and more disabling each week. I have a new neurologist that I am seeing on Monday after he saw me last week in the hospital to treat my seizures that became really severe and needed to get immediate attention for. I did in fact contact the Chiari Institute here in New York near me but after waiting and waiting to hear back from them, their response was...you definetly have Chiari Malformation and your images and symptoms fit along with the length of time that you have experienced them...HOWEVER....we do not feel that you are a surgical candidiate so...so sorry we cant help you. Its a waste of both our time. Then they said goodbye and hung up. Are the symtpoms I listed possibly connected or just other issues that I have to face seperatly?? I am at such a loss and dont know what to do or where to go. Plus I dont know anyone else who has this condition to even ask. I would prefer not to have such an invasive surgery (especially as I am now done with my fourth surgery in three years and potentially needing another one--all unrelated to this but complications of the symptoms mentioned). Someone please tell me I am not losing my mind and that things do get better!! I want to be a functioning 26 year old and accomplish the things I should! Sorry for the long message just wanted to be as informative as possible to get some answers. Thanks!

[selmaS]

  Well u will find support here....I am so sorry u r going thru this but u r not alone in how u r being treated when I was in high school I was sent to a shrink and given prozac and other meds for anxiety....

Chiari can cause anxiety like issues and the Drs treating u have no idea about Chiari.

U need to get the CINE MRI and see a Chiari specialist or send ur MRI copies so they can offer u some insight and guidance as to what to do next.

Not sure what u r using to self medicate, but it is not a good idea....do get all the related issues ruled out, and see what the specialists say.

again, u r not alone : )

[Jecca0809]

to be honest they have never ordered a CINE MRI, and have never looked for a CSF obstruction. I honestly also believe i would like to AVOID having a chiari surgery at all costs lol. I have had four surgeries in four years and not really looking to have another one if I can help it (although I may actually have to have one more now :( just got the news today!!) Alot of the neurologists I have seen feel that Chiari malformation is not a big deal that alot of the symptoms i present with are pyshosamtic (mainly because i have a pysch history and once you do everything because a symptom in your head..positive test results or not).

MRI's that I have had are of the brain, cervical spine, thoracic spine, and lumbar spine...which they make me repeat about every year to check for any changes.
Tests done include EEG, nerve conduction study, EMG, holter monitor, tilt table test, memory testing, barium swallow test, endoscopy (awake and knocked out), hearing tests, and do physical therpay, occupational therapy and was doing speech therapy but now refered to a voice specialist, as the speech therapy place apparently doesnt deal with the speech disorder that I have now, they mainly work with stroke victims.

It doesnt exactly help that I self medicate in order to deal with all this :( self medication on numerous levels!! I keep being reminded that I am to young to have all these medical issues!! It would make it alot easier if I just had answers and then support

[selmaS]

  Hi and welcome to the Chiari forum.

It is very possible for u to have these symptoms which are associated with Chiari, however, not every one is a surgical candidate.

U may have related conditions that if treated may help u function better.

I would imagine u had a CINE MRI and u do not have a CSF obstruction....seizures are associated with Chiari...not everyone develops them, but enuff do.

What MRI's have u had and what testing was done for related conditions?