Is it the EDS or something causing these symptoms?

I have type 3 Ehlers Danlos Syndrome. My son has Chiari 1 Malformation and EDS. When his dx was discovered I thought for sure that I had chiari as well. I have most of the same symptoms that he does. I have had an experienced neurosurgeon who knows EDS and chiari examine my MRI's. I've had upright and traditional. No chiari has been found. I am wondering now are the symptoms from the EDS? Or could it possibly be from what one radiologist found on my scan... My MRI states this in the conclusion notes:

Somewhat tortous right vertebral artery appears to indent the right anterior aspect of the medulla. Occassionally such appearance can be associated with the clinical symtoms (symptoms) (expressed by this patient).

My symptoms are: Pounding headaches right side base of skull, When severe they hurt all over base of skull. Never top sides or front. Occassionally unable to put chin to chest whenit hurts most. Balance & vertico issues, double vision, occassional vision loss (fades out like a dimmer), occular migraines, preglaucoma. Ringing in ears( mainly right), Feeling like back side of my head is in a vice, unable to go under water more then a minute without feeling like head will explode, feeling sick to stomach when under water alot, photosensitivety, motion sickness, eye pressure & pain, facial skin twitches. Pain when any pressure is applied to top of head (head bands ear muffs etc). Triggers to cause severe headaches are laughing hard, yelling for a period of time, cold air. If I am laughing hard for example I will hold base of my skull w/my hand for a while since my head will hurt terribly in base of skull for a while after. Is this from the EDS? Or the somewhat tortuous right artery that indents the medulla? I cant find anything online that is helpful on this or anyone to ask. My doc saw it noted by radiologist & said it had nothing to do with my symptoms & I dont know what to believe. I did find one site talking about this dx & all those patients compained of the symptoms I have. I really want help in understanding what symptoms I have are EDS related & not.  My fingers in right hand often go numb as well.  TX so much!!  Robin ~

[selmaS]

Hi Robin,

Wow, it does sound like chiari symptoms...and they told u  that u do not have it?....seeing drs can be frustrating as I am sure u r aware just taking ur son.

May I ask how u got ur EDS dx and type?

I was told to get a deff on type I would need to see a rheumatoid dr and a geneticist.

"selma"

[Proudmomma3x]

:)  TX I saw Dr. Fraser Henderson in Maryland.  He is a neurosurgeon very experienced in Chiari and Connective Tissue Disorders.  He dx me. Yes those docs can dx too ~ I also have swallowing issues and forgot to mention.  I have heard from many that if type isnt clear the only type that truly is important to be sure of is the vascular types as those can be life threatening.    ((hugs))

[selmaS]

If u r in/near MD....Dr Francamono is a EDS specialist....in Baltimore.

I was told the same...had my carotid arteries checked....all ok.....

Were u checked for Hashimotos thyroiditis?...that or GERD can also be a reason for swallowing......outside of chiari....which is also, a good possibility for this issue.

[ramgirl77]

I would really like to know what you find out, because I also have the extreme laughing headaches, and i also have eds but all tests come back clear. The headaches are almost daily now. I was convinced for a while that i have chiari because i also have alot of the other symptoms, but they always say after taking 1 look at my mri, no chiari. What about chiari zero, no no your not a candidate for that. I don't know what to do at this point, my insurance is up at the end of the month and I have not been able to work since May.

[selmaS]

Request copies of ur MRI's and the reports and get another opinion.
How long since u had ur last MRI?

The HA's from laughing r a chiari issue....and there r too many medical personnel that r not up on new research concerning chiari and the term chiari 0.

U need to find a good chiari dr to help u determine what is going on.There is a list to help u get started on ur research in the chiari Health Pages....http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

"selma"

[afriend06]

I get the exact same headache starting at the base of the skull right side. Mine will work its way up behind my eye and in my ear. It feels like a lot of pressure. My doctor did some sort of injection in my head where the pain starts and I haven't had that god awful headache for 3 weeks!!! You should check into that!