No herniation? Symptoms?

[Brendaz20]

I had an mri done..it was negative. I heard that having zero malformation doesnt mean u cant have it? Im having all these weird symptoms..like pressure in the back of my head, ear popping, my head cracks all over, i cant hold my head up, and i have extreme pain in my neck. Idk what to do...im thinking i could also have pinal stenosis. Im losing feeling in my saddle area and having bladder and bowel probblems. My insurance rejected a spinal mri that i feel i need. Idk what to do! Im going crazy! My life revolves around my symptoms...im only 20 and about ready to take a medical leave from school. This is all too frustrating. Anyone know what i should do?

[selmaS]

Many with Chiari can also develop auto immune issues and one is RA, so it can be associated with that or another is connective tissue disorders like Ehlers-Danlos....that can cause joint pain and stiffness too.

Do have ur Drs look into both.

[Brendaz20]

Sorry for all the questions but your answers are helpful! Is joint pain and cracking also symptoms of chiari? As well as stiffness?

[selmaS]

I also have had issues with sensitivity to light...especially florescent lights....
and I even had loss of peripheral vision and had one time what looked like rain going down a window in my peripheral vision...which I was not outside nor was it raining....

Some things also get wavey light  the way we can see the heat radiate off the road in the summer....I can get that when I look at a stack of paper or other objects.....

The phoptophobia I think it is ..when u see a negative of something u just had in view after u turn away from it....

I have also had constant tearing of the eyes, dry eyes I think, but it feels like there is something in the air to bother my eyes....

I wear glasses too, but I get them from a drug store and change the magnification when I need to....

[Brendaz20]

I see. I do wear glasses but the eye doctor told me i dont need a new pair that my vision is totally fine! But i see constant flashing and static in my vision everyday and im super sensitive to light. No one has been able to tell me why my vision has suddenly gotten worse. i also see after images and fireflies as well. I feel like im 60 already with all these symptoms even though im only 20. :(

[selmaS]

  Yes they can be, or they can be due to conditions related to Chiari....

I was also DX'd with Fibro and later was DX'd with Ehlers-Danlos.....

I also had vision issues and told by diff Drs that it was age related, and even an eye exam said I had no need for glasses however I could not see properly....it can be frustrating....but once u find a Dr that really knows and understands Chiari u will see a huge difference in how u r not only DX'd but treated.

[Brendaz20]

I have a question regarding symptoms. I want to know if vision changes and insomnia are related to chiari. Last year is when all this started happening. I had severe burning and tingling in my eyes..and so much pressure. I also couldnt sleep til seven in the morning. I tossed and turned and felt all these weird sensations going on in my head. Now i see constant static and flashes in my vision. Ive had my eyes checked and their normal. All doctors told me is i have anxiety..stress..and fibromyalgia. Im really not convinced. Are these symptoms related to chiari?

[selmaS]

  Here is a link to the list of Drs...he is listed for NYC.....at TCI.

http://www.medhelp.org/health_pages/list?cid=186

[Brendaz20]

May i have the contact info of the specialist you were telling me about? thank you

[Brendaz20]

Thank you so much. Im so confused as to whats going on with me. Life is becoming a challenge and i just want answers...:/ thank u though.

[selmaS]

  I am so sorry u do not have the support...it is difficult to locate Drs that understand this condition so for the lay person to understand it is even more difficult....I know we want family and friends to understand and support regardless if they understand....we expect their support....

But, things will all come together for u....try and relax and get ur files to the Drs and take it a day at a time.

We r here <3

[Brendaz20]

I contacted Dr.Ulrich Batzdorf in L.A but i did get a response from someone in New York who said they will look at my mri. I cannot travel due to this undiagnosed illness that i have and neither of my parents aren't understanding of what im going through. Im basically researching this and doing this all on my own.

[selmaS]

  May I ask who u contacted?...I know Dr B at TCI will e-mail u back....

I had to travel just a little over 3 hrs to get to my Dr and it was well worth it.....

May I ask y u can not travel? Is it the expense?.....

[Brendaz20]

Ive emailed a chiari specialist to see if they would be willing to look at my mri if i sent it. I live nowhere near a chiari specialist so i would have to travel far which is impossible for me. I havent recieved a response back. What other specialists could i contact?

[selmaS]

  Hi and welcome to the Chiari forum.

U r right,  many Drs classify Chiari at a certain length of tonsil herniation, when Chiari is the malformation of the skull and it does not matter how long the tonsils are, but if they obstruct CSF fluid......

Even the smallest herniation at 2mm can cause many symptoms....plus so many of us also have related conditions not DX'd.....so it is possible u have overcrowding (retroflexed odontoid) tethered cord, or ehlers-danlos....ICP, POTS....many of which cause the same symptoms as Chiari.....

U need to get copies of ALL testing u have had done, call the facility that did the studies not the Dr and request them, u may have to go and sign a form....ask for copies of the reports too....u learn so much more from these then they tell u....plus, once u have them it is easier to get a 2nd or 3rd opinion.