Concerned

[lookingforanswers_2013]

I hurt my back a few months ago and had an MRI (cervical - lumbar). On the MRI they found a 4mm syrinx located somewhere other than where I was hurting. My doctor said it was not a big deal probably just something that I was born with. I decided to look it up and see what it is and found a lot of information which led me to Chiari Malformation. I guess my main question is should I get an appointment with a neurologist on my own or just wait and see what time does?
I realize you can self diagnose yourself with anything if you look at ll the symptoms of things, but some things stick out that I have had for a long time and have just been treated for them all individually.
I am not sure  it could just be a coincidence....
Here are my symptoms:
4mm Syrinx
Neck pain, shoulder and upper back pain
Headaches (sometimes VERY severe and have sent me to ER)
Bladder control problems and frequent urinitation
Clumsiness
Poor memory
Poor Concentration
Eye problems - rapid blinking and sensitivity to light
Insomnia
Depression
Abdominal Pain
Fatigue
Anxiety
Tachycardia

Looking at all of that kind of makes me worried overall. However, all of these things are not constant, they come and go but I have had some of these off and on since I was about 17.

Please help! Any information would be greatly appreciated.

[selmaS]

  Congratulations !! DO keep us posted....I pray u get answers <3

[lookingforanswers_2013]

Sent my stuff to Mayfield clinic. Dr.Kuntz reviewed all of my tests and wants me to come into the office for an appointment. I will be going at the end of May.

[selmaS]

\  OOOOOOOOOOOOOOOOOOOOOOOooo...lol...

[lookingforanswers_2013]

No not my surgery. He will read my stuff within that time frame depending on how his schedule is. :)  it's a little nice to know that I am not totally losing my mind.

[selmaS]

  Anger and just being overly emotional can be from Chiari we all seem to feel like this ...so u r not alone there.

Yup....I sit on the outside fringes to help getting overwhelmed by all the convos around me...I can not be in the center of a lot going on,,...it is just too much,....

U said u will be talking surgery but only had a cervical MRI? U didn't have a brain MRI or a thoracic and lumbar MRI or a CINE MRI? What about testing to rule out related conditions like Ehlers-Danlos? This can affect how u feel and heal post op so it is important to know b4 u have surgery.

[lookingforanswers_2013]

Mayfield called me today to do the pre screening interview. I will be sending MRI to them today. He said Dr.Kontz would review it and they would call me within 7-10 days depending on his surgery schedule.

[lookingforanswers_2013]

Push for which MRI? I have had a cervical, but that is it.
The more I read the more worried I become. Some of the symptoms that I have read seem like I wrote them myself! I was literally standing in a store today and could not remember why I was there! There have also been times where I can not find the words to that I want to say. Do either of you know if anger is a symptom? I am not an angry person, but the past year has been horrible!!! The littlest things make me so irritated. The other thing is my being in a group of people. I have always been a people person and the past 8-10 months I can not stand to be around a lot of people. It is like I can not concentrate. I can be having a conversation with someone and have no clue what they are talking about. I am so discouraged and scared!

[TracyGR]

I would definitely push for the MRI. I had to push to get my other two kids tested and sure enough my 2nd son also has it. I suggest you have two radiologists read the films also and read your own reports and Google anything you don't understand. Push push push. Good luck.

[selmaS]

  Wonderful news.....do keep us posted : )

[lookingforanswers_2013]

I sent some things to Mayfield Chiari Center. We will see what happens. Thank you for all of your help!

[selmaS]

  Contact one and ask if they will review ur MRI as u do not have a NS that is well informed on Chiari near u...some will do it for free, while others may charge a nominal fee.....

Each is different as to how much info they will give u, but it is a way to get more info to ur local Drs too.

[lookingforanswers_2013]

How would I go about sending it to a Chiari specialist?

[selmaS]

  U may want to send copies of ur MRI to the Chiari specialist and let him/her offer an opinion....many times they will consult with ur local NL....so worth a try.

Many of us have had to travel to get to a Chiari specialist and for me it was well worth it. I drove 3 hrs away too.

[lookingforanswers_2013]

No I never had a neck injury. I asked my doctor last time I was in and he looked at me like I was crazy. This means I will be getting an appointment myself. I have tried to find a Chiari doctor close to me and the closest one is three hours away. I do not require a referral for my insurance. Should I see an neuro close to here for an opinion and if he thinks there is a problem see the Chiari specialist?

[selmaS]

  I looked at ur pics and  to my untrained non professional eye, it does look crowded, even a kink to the brain stem...so u deff should have more testing to see if u have a CSF obstruction.

Did u ever have an injury to ur neck?

[lookingforanswers_2013]

I added photos in my pictures.

[lookingforanswers_2013]

Is there anyway to put a picture on here? If so I can add it and you can look at two MRI images that I saved. I have removed all of my personal information off of them. I am not asking you for a diagnosis just wondering if I should seek further testing. :)

[lookingforanswers_2013]

I just looked at my report. I have the report and the MRI on a disk. I had lumbar, cervical, and thoracic MRI don but not brain. After rereading the report I realized I had the size incorrect. The  syrnix is actually 6mm and is located at C6-C7.

I have the disk but wouldn't know what it looked like if it hit me in the head.
I have not had any injuries to my neck.

[selmaS]

  Hi and welcome to the Chiari forum.

There are many conditions that have many of the same symptoms, so most Drs will do testing to rule out conditions with these symptoms....Lymes. Lupus, MS.....

Do u know where ur syrinx is located? DO u have a copy of the MRI, MRA and the reports? If not request them as they can help u get answers.

A syrinx can be congenital, but can also be the result of an injury or an obstruction of CSF which Chiari can....

SO u want to know is it congenital, from an injury / obstruction and where it is located.

U should have a cervical spine MRI and a brain MRI to rule out Chiari.

Many Drs will consider this an incidental finding and no need to look further...
but push for a MRI of the brain if u can just to see if Chiari is also involved.