0 or no?

[HuntressThompson]

I'm slowly becoming more disabled, i have headaches extending from the back of my head to my eyes, pressure at the top of my head, a curvature of the spine, hypermobility in my joints, and no one can figure out what is wrong with me except for the POTS. I know this isn't all in my head and i'm at the end of my rope. Is this 0?

[Elisaandbucky]

I am reading through your post and Selma's responses. I am sorry to read about your daily disabling pain. It sounds like you are struggling most from not being able to get ay definitive answers. It is super frustrating to feel like there are no diff initial reasons for what you are feeling everyday. As Selma says, do all the research you can in your efforts to find a good doctor who specializes in Chiari and is knowledgeable about the related symptoms. It seems really frequent that those practitioners who do not know about chiari and its implications just dismiss patients who come to get treatment. I experienced that before I found my doctor. Please find comfort by coming here to this community and knowing that you are part of a loving and encouraging family.

[selmaS]

  No worries....do let us know what you find out. BTW- the genetic testing they do for some of the types of EDS is a skin biopsy...not blood work....AND not all EDS is DX'd with blood work or biopsies....so do make sure they know the beighton scale for testing hypermobility.......and know the markers for EDS.

[HuntressThompson]

I had growing pains too! How weird! My doctor is going to check my blood work to see if they did genetic testing already if not he said he'll do it. Thank you for being so helpful, Selma!

[selmaS]

  The sacral dmiple and patch of hair may indicate tethered cord, I have the dimple as well and also have EDS....

Use the list of Drs we have listed to help you research Drs....a true Chiari specialist will check you for EDS...at least mine did.....and they should also rule out ALL other related conditions as they should take them into consideration should you be deemed a surgical candidate.....

Know it is not something you need to rush into....take your  time and have the testing done to get all the answers b4 surgery is considered as these related conditions can affect your recovery.

I always found it curious that I had "growing pains" and my 3 sisters didn't.

[HuntressThompson]

I don't even know where to start. My friend suggested I get tested for EDS because I have a lot of the markers and she has it too so she highly suspects it in me. I also have the sacral dimple that could be nothing but the patch of hair with it could make it a little more serious. I've always been a stretchy painful person though. Thank you so much for getting back to me. I'm very scared and don't know what to do. There are some nights I feel like I'm going to die. Some days I can't get out of bed. The full spine electricity is terrible and the seizures scare me. I don't want to be like this forever.

[selmaS]

  Hi and welcome to the Chiari forum.

At this point you would want to consult a true Chiari specialist as Chiari is not the size of the herniation but far too many Drs classify Chiari or not by the size and not the fact is it or is it not Chiari...as that is a malformation of the skull....

What you may want to do is get more testing...a CINE MRI will indicate if there is a CSF obstruction....and finding related conditions and or ruling them out will also help.....

See our List of Drs 2015 to help you start to research Drs and help you find the right Dr for you.