Help with questions about my Chiari Malformation

[Salv1142]

Hi everyone. I am so glad I found this forum as I have been feeling so alone over the last 6 months.

I was diagnosed with Chiari Malformation after complaining about pressure in my head to my therapist and having an MRI done. I am 21 years old and I can first remember this pressure in my head coming on when I was 18, but it was not very intense. In the last year, it has become much more pronounced and that is what led to me getting a MRI. Other symptoms I started to experience about a year ago included extreme fatigue, hand shaking, trouble swallowing and numb extremities. I saw a doctor at Penn Medicine and he said that although he was not very experienced with the surgery he thought he could perform it and relieve some of my symptoms. Surgery definitely scared me but I was so excited at the prospect of some symptom relief that I was willing to do it.
A few weeks later Penn got in contact with me and said that my malformation was not as pronounced as they thought  and that surgery probably would not help. This truly left me feeling hopeless and scared.

Here was Penn’s report on my MRI:

“No acute intracranial hemorrhage extra-axial fluid collection, or acute infarct. No mass effect.
 
Ventricles are normal in size, shape, position. Cerebral tonsils are mildly low-lying bilaterally (right greater than left) with crowding of the foramen magnum, but are morphologically normal appearance and do not meet criteria for Chiari malformation.
There is no syrinx.
 
Visualized paranasal sinuses are essentially clear bilaterally, with a solitary retention cyst at the floor the right maxillary sinus. Right deviation nasal septum with small right nasal spur. Orbits are unremarkable. Mastoid air cells are clear”

This leads to where I am now. My symptoms have gotten worse. Specifically, the pressure in my head is more unbearable than ever and new symptoms have emerged. Blurred vision as well as memory problems have presented themselves. It kinda feels like I'm in a  fog and cant focus. Not fun at all. Moreover, I now have a upper neck/lower skull pain that has not gone away in a few days. I have been under a lot of stress at school and I read that can lead to a flare of symptoms. I really hope this is the case and the symptoms will get better if my stress goes down.
Is it possible to find relief if my X rays do not show a very pronounced malformation? Is it possible that I have a shorter herniation, but also wide, so more severe symptoms because my CSF flow is obstructed? Should I look into a Chiari Specialist and a CINE MRI?
I just want this to get better instead of worse. I am only 21 and don’t think I can live the rest of my life with these symptoms, god-forbid if they continue to get worse.

Any advise would be greatly appreciated.

[selmaS]

  The Beighton Scale or Score is one way they DX EDS....but there is other criteria they would get from a fact finding questionnaire....ie- do you bruise easily....slow to heal ....hypermobile joints, ...loose stretchy skin,...skin that scars easily.....blue sclara.....

Not everyone with EDS will have the same set of symptoms/criteria...I never considered myself to be hyper mobile...but I am...those with lax joints tend to develop tight muscles to help hold us together so we feel stiff/tight not limber at all...but when checked our ROM is beyond what most people can or should be able to do....so having the testing is the only way to know for sure.....

[selmaS]

  Yes other testing is important as the specialists may require it b4 they see you.

And syrinx can not be ruled out until the other area's of the spine are looked at as well as other possible issues with in the spine.....bulging disks, or tethered cord.

There there is testing for related conditions like Ehlers-Danlos......

Straining of any kind can cause a flare up of symptoms.....coughing, laughing , a sneeze and a BM ...so yes , a work out can trigger symptoms to increase.

You have to listen to your body as to what you can do...Chiari symptoms also cycle so you could have a time frame you can do some decent work out routine and then go for a time where you can't do any....so listen to your body what your's can do.

Brain w/o is most like brain MRI with out contrast....so you didn't have a cervical spine MRI either?

So a cervical , thoracic and lumbar sine MRI as well as a CINE MRI.....depending on if you can tolerate contrast the specialist may ask for  the MRI's done with that as well.....

[Salv1142]

Wow it seems there is a lot to do before I can even be properly diagnosed... Let alone treated. Thank you so much!

Also, what kind of testing would check for Ehlers-Dalos?

[selmaS]

  Hi and welcome to the Chiari forum,.

First get an opinion of a true Chiari specialist...and be happy that other Dr decided not to go forward with this surgery.
Most post op issues can be lead back to a Dr that was not experienced enough with Chiari and the related conditions.

Your report said no syrinx...what MRI's did you have? one of the brain, cervical spine, thoracic and lumbar spine? A CINE MRI?

If not there is no way to know if 1- surgery will be a benefit and 2- if you have a syrinx as they can develop in any area of the spine.

Also, Chiari is not the size of the herniation but a malformation of the skull which causes the herniation to occur.

Since you are in NJ I would suggest heading up to NY for a Chiari specialist there are a number of them up there and it is where I went as there were not any close to me in my state and NY was closest for me.

[Salv1142]

Thanks for answering so quickly  Selma.. And also thank you for answering my other question about NYC Chiari Specialists on the other forum. I think I am going to try and find a specialist covered by my insurance.
As for my type of MRI, I went back and looked at my report and it said "MRI Brain w/o"
I looked it up and I think this is equivalent to a MRI of the Brain/Head w/o Contrast but I'm not sure. Do you think I should look into getting more types of of MRIs before seeing a specialist? If so what kind? (The CINE MRI?)

Also, I am new to this forum and have noticed a trend of people describing symptom flare ups when they do strenuous activity..... I work out everyday and it is sometimes rather intense...Could this be making my symptoms flare up? Should I lower the intensity of my workout or maybe even stop for a little?

Thank you again in advance for taking the time to look at my questions, it really does help a lot because their just isn't a lot of info out there!