Ehlers danlos and chiari

[seamatty]

Ok so I think I may have ehlers Danlos. Selma perhaps you could give me some insight. 2 of my 3 daughters are hypermobile. I am not very but my wife is (although I show signs of eds). I have had Eds symptoms for over 12 years which I investigated neurologically instead of from a rheumatology. So all my tests always came back normal. I had an LP in 2008 which led to a spinal headache that would not go away for about 4 months. Possibly due to Eds lack of healing. Have had spinal like headache 3 times since then but I now believe this is a chiari headache

Here are my questions:

1. I am visiting a neurologist tues for my headaches...should I ask her about the eds? Do they have any insight into this?

2. Does Eds make chiari headache worse? My MRI shows room, no crowding and very minor herniation 3mm. Butn perhaps that combined with eds is making headache worse...is that possible?

3. My daughters show signs of Eds 3 but I nor my wife have there level of flexibility...but I also heard you can't genetically pass on a different form of Eds than the kind you have (I.e. if they have Eds 3 I would have passed that on, not Eds 6) - my oldest is an amazing athlete but is profoundly flexible and has occasional joint pain - she does seem to bruise a little easier than most but she is a daring soccer player. Our doc called her bruising normal and said wound healing looks great.

Any input anyone has is great as I am seeing the neuro tues

Thx all

Matt

[selmaS]

  Well the tightness would get better when u lay down as u r not holding ur head up,....so u relax....JMHO

As for the nausea it can be the result of vertigo even if it is ever so slight, and pain can cause it as well.....


Here is a good link about the instability issue- http://www.killerbanshee.com/family/medical/craniocervical.html

[seamatty]

That could be - I just know whenever I get it I have nausea too...I know the NL will tell me tues it is occipital neuralgia...I know it - are injections for ON dangerous for those of us with chiari and possible EDS?

The only thing is that right left tightness gets better when I lay down...csf leak??? I don't know

[selmaS]

  I was told I had hypermobility....but, I still need to see a Rhematoid Dr that specializes in EDS to see for sure....the problem is she is in Baltimore , MD and I  an 3.5 to 4 hrs away and do not drive.....

I am hoping to get there soon...and see just  what all is going on and the best way to treat it.

  That pain may be u compensating...the way u r holding urself, ur muscles tighter....do u know what I mean?....I did that a lot...I even use to tense up that my thighs would get tight....and hurt....

  

[seamatty]

If you don't mind me asking what type of Ed's were you dx with?

Also the back of my head left and right side (not in the back middle but more sides) seem to throb with movement the last 2 weeks... Is that common with  chiari?

[selmaS]

  Hi...I will try and answer ur questions the best I can : )

1 - yes, the NL @ TCI is the Dr that DX me....I was to a rheumatologist for what was thought to be lupus and when ruling out MS during a MRI my chiari was found and my rheumatoid Dr dropped me, never looked further or spotted my EDS.  SO, not all NL or rheummys r well informed or have blinders on....so ask, it doesn't hurt to ask : )

2- EDS can make a HA worse as it can cause the vertabea to be unstable and that can cause a lot of pain.....it is referred to as cerebral cervical instability...

3 - By flexibility u mean the ability to move into positions like ur kids...trust me as we age we can not continue to be that flexible unless we work at it....our muscles can hold us back....I went to PT and the PT said I was not tight I was flexible, but they were moving me, it was not me moving on my own and I could not get in those positions on my own as my muscles are not that flexible, my joints however are.

  I sprained my ankle in May '07 and it is still tender to the touch....weird...I had a bruise that lasted a yr.....I am very slow healing, but not all  with EDS are like me, just like others with chiari did and do not have the same issues as me.

  Flexibility can come thru training as in gymnastics or dance...but those that r just a little better may also  have EDS.....so, u have to get the testing....