Chiari I and pineal cyst

[01458]

Hi I'm new here and I would like to chat with people who had similar experiences with this problem. I'm 18 years old and I was diagnosed with Chiari I (15 mm) and two pineal cysts 5 and 7 mm, on december 17 after almost two months of experiencing problems. The first simptom which made me go to the doctor was a strange feeling in my head . I felt confused, dizzy, absent minded, like I'm not living in reality and couldn't concentrate and this feeling did rarely go away, it was always present and I really hated it. I couldn't clearly explain it to a doctor without being looked at with confusion. the first neurologist I went to was telling me  it was a psychological problem. But my condition was not geting better even after going to a psychologist and I went to a second neurologist, who made me do an EEG and MRI. In the meantime, I was getting more symptoms like: breathing problems, chest pain on the left side (EKG was all right), swallowing problems, light and sound sensitivity, pressure in my head, tinnitus, balance problems and many more including ''that'' feeling which I later found on the internet, brain fog. I went to 4 neuro surgeons who either ignroed my cysts or chiari and they didn't know how to threat me or what causes my symptoms, to do a surgery or not and the came to an agreement, to make another MRI in 2-3 months to see if if something will change. I'm hopeless right now because I didn't make a single step in solving this problem and I have to finish high school but this causes me many problems.

[selmaS]

  Hi and welcome to the Chiari forum.

Sorry to hear you also have this condition but your journey to getting a DX was much faster then many of us.....but, the journey continues when looking for a Dr well informed and experienced with Chiari and related conditions....it is  not unusual to have Drs look at us like we have 3 heads or to think it is "all in our heads" and it is but that is not what they imply...sigh.....we call this journey the Royal Chiari Run Around...

TO help with this frustration we do have a list of Drs for you to use to research Drs....it is not a referral nor an endorsement....only a tool to help you get started....Keep in mind not all of us will find a true Chiari specialist close to home and may have to travel....

Did you have a CINE MRI? A MRI of your complete spine?  Cervical, thoracic and lumbar? It is important to rule out disk issues, tethered cord,syringomyelia, along with other possible conditions.

May I ask, do you know what you may have done prior to your symptoms starting that may have triggered them ?

[01458]

Thank you!                                                                                         No, I did just a regular MRI because, I live in a country in which the government doesn't show much interrest in health financing, so we have only 1 MRI in the public hospital in the capital, and the waiting lists are horrible because people from other parts of the country have to come there. My appointment for it is in july, so I had to do it in a private clinic, and I could only aford MRI of brain.                                                                                            

I have only one reason that may have triggered my symptoms, but I'm not sure if it could be stress. I failed math and had to practice all summer for my make-up exam and it hit me really hard, it was the most stressfull period for me in my life.

What makes me worried is that the almost all doctors say that this is nothing to worry about and that I can live with it but it causes me problems every day. There is no chiari expert in my and in Neighbouring Countries, which makes it even worse somehow.

[selmaS]

  While it is true many with Chiari can live with it...only testing will be able to determine that....surgery is not always required....

Stress can trigger symptoms...and it is possible you always had symptoms but attributed them to something else....or just considered how you felt to be "normal" and for you it was...until the symptoms trigger into a flare and then we sit up and take notice.

For now see if you can get blood work to look at vitamin and mineral levels as they can play into the brain fog as well as many with Chiari and EDS tend to have mal absorption of vitamins leading to these varied symptoms that many Drs do not consider Chiari related.

Vit D, B12, and magnesiumand potassium.....

May I ask what country you are in?

[01458]

Some dr have asked me if I had problems at school but they didn't told me that stress could be a trigger. I was asked a lot of times if I hit my head but I didn't.
The second neurologist I went to gave me colabamin B12 and I made a pause but I need to continue. Also I read somewhere that apple cidar vinegar can help with brain fog.
I know that surgery is not always helpfull but I'm really afraid of my brathing problems, sometimes I'm short of air and cant breathe in properly and also they didn't give me any medicine for my cists, I can't stand to think that they might grow when left unthreated :$
I live in one of the former Yugoslavian countries.

[selmaS]

   The thing is, getting sick with a cold or flu could also trigger symptoms to flare...coughing hard...sneezing...even a car ride on a bumpy road....so many things could ultimately trigger symptoms to flare..

I never heard that of apple cider vinegar.....hmmm must look into that.

Wish I knew of Drs in your area..what you might want to do is e-mail a known Chiari specialist here in the States they may consult with your Drs there to help you.

[01458]

Thank you for all these informations!
now that you mention it, I remember having a cold when my first symptom,  brain fog started.
Yeah, I wish sometimes I could find a doctor who is experienced with chiari.
Actually one of the neurosurgeons, who suggeste an operation is going regulary to the USA for specialisation and he did a chiari operation last year on his friend. I somehow trust him, although he is very young, while the others were older but I didn't see them having any chiari related experience.