My Posts
14 hours in the Chiari Malformation Community - 5
Hi and welcome to the Chiari forum. May I ask, do you have Chiari as well? Since this is an older thread the person you addressed your message to may no longer be an active member.....if you want to chat with that person try sending them a PM ( private message) which will generate an e-mail informing them someone is trying to make contact.
20 hours in the Chiari Malformation Community - 5
Oh you are sooooooooo right.....there are more with Chiari then MS...so right there you can see this is a under exposed condition. Have you been tested for Ehlers-Danlos? It can cause one to develop TMJD, it causes headaches...and all over body pain and joint pains it is often mis-DX'd as fibro...this is a related condition to Chiari . If you hav...
Jul 31, 2015 in the Chiari Malformation Community - 4
Hi and welcome to the Chiari forum. As you can see you are not alone in the symptoms you have been having...... Make sure you are tested for ALL related conditions as they can affect the outcome should surgery be an option for you. As one poster mentioned above surgery is not a cure or fix for ALL your issues/symptoms but it can help reduce so...
Jul 31, 2015 in the Chiari Malformation Community - 4
Hi...it sounds like it could be a few things going on....your syrinx's could be part of it....so a MRI to check it there are changes...next, were ALL related conditions ruled out? There are many related conditions that have the same or similar symptoms to Chiari....so they should be ruled out too.. For example if you have Ehlers-Danlos and a ...
Jul 31, 2015 in the Chiari Malformation Community - 5
There is a Dr Heilman.....and Dr Rosner in NC and Dr Henderson in MD.......I hope these are helpful.. Have you had a CINE MRI ?
Jul 31, 2015 in the Chiari Malformation Community - 1
Hi and welcome to the Chiari forum. Each of us will have a different time table for recovery...taking it slowly is very important. I was told it can take up to 2 yrs for the nerves to heal completely....so, no matter how good the incision looks there is much more healing to be done inside. What we do can affect recovery as well...so listen to your...
Jul 31, 2015 in the Chiari Malformation Community - 3
Hi and welcome to the Chiari forum. Yes, we have had members that have been part of clinical studies....they have not come back to tell us how things went.....I am sure if you use the "search this community" feature you can locate the older threads on this topic. I also am very happy to hear that your family will be doing this, as it wil...
Jul 31, 2015 in the Chiari Malformation Community - 1
Hi and welcome to the Chiari forum. I did have pain when even moving my eyes ...so yes to the blinking....even rubbing my eyes they just hurt to touch.... When were you DX'd with Chiari? Have you been DX'd with any of the related conditions?
Jul 31, 2015 in the Chiari Malformation Community - 2
Sorry forgot the epidural....this is a very tricky one as it tends to be done in the spine and if they poke into the dura it can cause a CSF leak and more pain then you are in now...so I would not suggest it .
Jul 31, 2015 in the Chiari Malformation Community - 2
Hi..steroids are short lived benefits as you can only have so many injections....and the benefits only last as long as the injection....and for some it did not work at all. We are all different as to what will work....so we have to try something ourselves to see what is best for us. Botox is another one that benefits can wear off and I am not sur...